A Thanksgiving Slip

It has been a while since I added another update. I waited because I have seen things with Joyce that I wanted to verify or confirm before I put them to print. She has become more independent and less responsive to things the past month. Missy came for Thanksgiving and saw the same things that I did. Joyce is still better than before January but she has slipped a little the past month. She is healthy, stable and active but doesn't respond to suggestions or demands the way she used to respond. As a result, it takes longer to dress and undress her and to feed her, although, she eats very well. She is still an A-Typical AZ patient. She cannot communicate but seems to be aware when things are going on around her. Missy said she didn't respond to "mom" any more, only to Joyce and she can't sign her name anymore. She just prints random letters. Missy and I hope that this is just a cycle that she is going thru and that things will return to the previous level. We had a wonderful visit with Missy and great food for Thanksgiving. Danielle is moving to San Antonio in January and will also be only 8 hours away. Joyce and I will be going to Highpoint for Christmas.
Thanks for all the support and prayers
PAK

Sisters and the weather

The weather finally got cold enough to drive Joyce and I out of our Tivas and shorts. Last weekend Joyce's three remaining sisters came to visit her. It has been a tough year for her side of the family. They have dealt with two cancers, the death of the oldest sister, Dorothy, and Joyce's ongoing Alzheimer's. Of course Joyce has no comprehension of any of this and I doubt that you could do anything to make her understand. As it is so often said, "that is a good thing". She is still the happy camper and seems to be holding steady except for the an occasional fit of obstinence when I am in a hurry and need her cooperation. Two sisters were here in April and thought she was better than when they came then. One hadn't seen her since before we bagan the enbrel effort and said she saw a marked improvement. Outside opinions are encouraging.
We had our regular medical check up and all is well, we both even lost a little weight. Thanks to all of those still keeping up. Your prayers are greatly appreciated.

PAL

Flying Straight and Level

There is not much to report. Joyce has been as stable as I have seen her the past four weeks. I usually experience a fluctuation in behavior or actions as we cycle through from one injection to the next. This last cycle was as smooth as I have ever seen it and has been since October 1st when she got another injection. Joyce still performs all the daily functions such as eating, dressing, undressing, putting on her jewelry and brushing her teeth. I do have to set some things up such as lay out her clothes but she physically puts them on. She still likes to pace and will pace for hours up amd down the driveway if I let her.I give her as much freedom as possible depending on temperature and rain.
We visited our regular physician last monday and so far all results indicate that we both are in excellent health, at least for two people in their late sixties. My LDL was 65 which the Doc said was great. Sorry I do not have more to write about but glad I don't have anything bad to say about the present. If you are looking for excitement try reading the Police Blotter in your daily paper. Just don't vent your rage on anyone you love. Over time you will come to enjoy normalcy too.

PAL

Football, Congestion and TMI

Someone mentioned today that my last entry was August 28th, so dutifully I will try to fill out 20 lines of blog with 3 lines of new information.
The day after my last post we had a party to celebrate our 45th anniversary and Joyce's 66th birthday. The room was full of friends and family. There is nothing more precious in life than good friends and close family. Joyce had a great time and even joined in singing happy birthday to herself. We all ate well, enjoyed the cake and talked and laughed a lot. Joyce enjoyed all the cards but when back at home opened the ones that played music at least 6 or 7 times.

The last three weeks before the most recent injection didn't seem to have the variation in functionability that the prior cycles had. We went to Lake Charles last thursday for another injection and it was almost seamless. Joyce has been on a nice steady path getting neither better nor worse. She is eating well and except for a slight congested cough this morning, has been very healthy for the entire time she has been diagnosed. That is about 3 years and 9 months. I called the doctor this morning and talked to his nurse. She told me to go get some mucinex DM and claritin and not to call back unless her symptoms got worse. Since she took the first dose Joyce has been pacing almost non-stop. She also appears to be fresh and alert and not droopy and tired.

We went to the first football game last saturday and she did very well staying calm for most of the game. I talked to the First-Aid people and they agreed to let me use their bathroom for privacy if I needed to change her "depends". That exercise actually worked quite well and when we got back home she was still dry. Sorry if the subject offends anyone, one of our friends said "Pal TMI with the 'depends'". For those who are taking care of someone like I am, sensitivities are dulled after a while. Anyway, I think all the problems of taking her to a game are covered for now. I am still placing a ticket lanyard on her with info to help anyone who finds her, to get her back to her seat. Hopefully she won't disappear.
Thank you all for supporting Joyce and I with your encouragement and prayers. They are all appreciated.

PAL

No light in the tunnel but I seem to have found a flashlight

Hi everyone. There are new and exciting things happening with Joyce that I need to share before a "senior moment" erases it all. Before the last injection I was seriously considering going to a two week/ three week cycle because I was having difficulty with Joyce during that third week. Well, as soon as I have it all figured out Joyce decides its time to mess with me and her third week was actually better than the first two. In addition, I have seen more good things the last three to four weeks than I saw the prior two months. Little things, things you wouldn't notice or recognize if you were visiting. I have related before how Joyce likes to walk. She reminds me of the first Mike the Tiger and how he used to pace the same route over and over again. She will start at the back door, traverse through the carport and down the driveway to the street, then turn around and retrace her steps all the way back to the back door. She will stick her head in looking for me then start over on another round trip. The exercise is good for her and it seems to calm her down when she walks a lot. As long as she is coming back, my philosophy is to let her walk freely. However she almost never closes the door which causes th A/C to run all the time. I close it everytime I can but she seems to like it open. On Tuesday I actually got her to close it 5 or 6 times. It has been over a year since she closed the door.
We received cards from her sisters Ann and Joan. She looked at the envelopes and said "Ann Leblanc" and "Joan Cocke" even though Joan had not written Cocke on the return address. She still knows those names.
In the grocery store the other day I asked her to put the empty basket up as we were walking out and she pushed it around the corner to where the buggies are kept and stowed it properly. She has not touched a basket in almost 2 years.
I went yesterday to get her hair done and she basically just sat there with her leg crossed for almost an hour. She usually is constantly trying to get up and walk around.
While to some observers these may seem trivial, to me, they are significant indicators that her disease is regressing and she is actually becoming better. I have resigned myself to the fact that fixing the aphasia will take a true miracle but with parts of the disease regressing I will be able to keep her here at home for a long, long time.

Thanks for all of your support

PAL

Three steps forward two steps back

It has been a while since I posted. That is a good thing. My last post indicated that I thought I was having problems with Joyce during the third week. Remember that word patience?? I needed to be reminded this week. During this third week I have found Joyce more attentive and responsive than I have in prior like situations. I see her even doing things that she quit doing a year ago. To me a definite indicator that the injections are still helping her return to more normal actions. I don't hold a lot of hope for a full and complete recovery. I think her aphasia may be too much to overcome, however, my goal right now is to be able to keep her at home for the rest of her life and with these injections, I feel that it is a very good possibility. As I said I am constantly seeing snippets of improvement. maybe only two every three weeks but over a year that will become a lot. Joyce is as healthy as can be. she shows none of the classic wobble etc associated with Alzheimer's. She loves to walk our driveway, back and forth, back and forth. I am sure that all of you second guessers are horrified that I let her do that alone. Well I have been with her 24/7 for the last four years. Who better knows what she will do , ME, or some article in the New England Medical Journal. To me she is as predictable as the sun coming up in the morning. Certainly , there are times I restrict her but not because of some statistical warning of AD patients taking off. Joyce is very cognizant of her suroundings. She is also very attached to me. She will go where I go or if in the driveway keep coming to the back door to look for me then back out for another lap. She definitely enjoys her freedom and I no problem in many circumstances letting her have it. I believe it is helping her, you believe what you want but until I experience a problem I am not changing anything.
There is one area that has gotten worse. I have to keep "depends" on her 24/7. It is like she found out she doesn't have to go to the bathroom and quit trying not to wet them causing an occasional leak through problem, I still make her undress herself, dispose of the wet "depends", put on a new one and re-dress herself. At present I am going through about five per day. I feel as if we are taking three steps up and two steps back. At least I see progress. I know I will need help but I don't want strangers handling Joyce. I will use help when I feel they care for Joyce like I do. I won't just allow someone to come in and do "chores" on her. There are many people in the AD outreach programs who can and will help. I will find what I need there. We go back to Lake Charles for another injection this Thursday (8/20). Thanks for all the prayers and support.

PAL

From "Deaf" to seatbelt

Near the end of the three week cycle Joyce has a tendency to get slightly "deaf" and less responsive. I think she hears fine but is just headstrong in what she is doing and ignores me.If I wait a while she usually comes around to doing what I wanted to in the first place. I am certain I mentioned in an earlier posting about patience. If you have none you had better go buy some quickly.I am beginning to see her last injection kick in. She is more responsive and will comply with simple requests. Sometimes I think she senses more than she shows or at least acts according to the situation. I have been under the weather since yesterday. Joyce has not been a problem and has been somewhat maintenance free. Joyce is about 70% functional. She can dress and undress herself as long as I lay out the clothes. She can brush her teeth but doesn't do as well with her hair. She puts on and takes off her jewelry which include pendant and chain, two rings, earrings, bracelet, and watch. She will put on and take off her own shoes and tie or strap as needed. She eats on her own but can't prepare food anymore. She can get her drink from the refrigerator and unscrew the cap as well as put back part of it if she doesn't empty it. She can help put up clean dishes and go to, enter and belt up in the car if we are going someplace. Joyce has aphasia which means she cannot convey her thoughts orally. She can parrot many things or read something and say it out loud.She can also sing along with songs she has heard before such as "the battle hymn of the republic" which we have on a Lee Greenwood CD that I play in the car. Her body language and her actions tell me she sees and understands more than she is given credit for due to the inability to speak in a conversation. Enbrel is holding her up until a new med is found. I am patiently waiting for it.

Joyce is always a happy person and is always ready to go. I have to be careful what I say so I don't push her travel button or she will be out the door before I realize it. This is life in the fast lane of AD. There are millions who are far less funtional than Joyce. She and I are some of the lucky ones.

Thanks to all of our supporters

PAL

Visiting in the Heat and Travelling Home

Joyce and I had an uneventful trip home yesterday. She is an excellent traveller.

San Antonio was wonderful if you can tolerate the heat. I read somewhere that it is growing at the rate of 30,000 people a year. It is one of those cities that has no natural boundary surrounding it to prevent growth. Miles of open land Neast toward Houston, west toward El Paso and north but west of I-35. I has been growing so fast that just normal commercial infrastructure is limited. It was five miles from Missy's house to the only gasoline outlet in the area. All that being said, where she lives has a clean fresh look to it. I can see why so many people like to live there. Did I mention it was hot? Dry too.

For all of us, it was as good a visit as you can have. We did some sightseeing, a lot of eating and Joyce got to spend some quality time with Missy and Marie. It took Joyce the first night to become comfortable in the house and from then on, while she paced some, she also sat for long stretches. She seems much calmer toward the end of the injection cycle than towards the beginning. The other side, to me, is she is less cooperative near the end of the cycle, although Missy had a lot of success with her. We go back to Lake Charles for an injection Thursday on our three week cycle.

While our trip was uneventful travelling with Joyce can present some problems. Society's norms have no problem with a mother taking a little boy into a women's restroom or a man taking a baby in the men's room. Unless the facility is a one at a time restroom, everyone is uncomfortable if I go in with Joyce or take her in with me. Luckily she is able to still go by herself but when she does I don't know if she needs anything or actually does the business needed. Believe me there are no certainties. When we arrived in San Antonio her "depends" was still dry. When returning I had to change it after arriving home.

This past week convinced me that we can still travel and that it is good for both of us to do it periodically. It certainly refreshed my spirits and allowed us to visit some extended family as well as close family. Again the enbrel treatments have allowed us to do this by making Joyce more self sufficient than she was last December. Thank you all

PAL

Heat, The Alamo, The Riverwalk, Mexican Food and Family

Joyce's condition has pretty much stabilized. We are continuing injections on a three week cycle. Hopefully she doesn't regress. I realized that I had converted this blog from "trying enbrel to improve" to "life with Joyce and Pal after enbrel did its thing". You are all welcome to still read it. One reason I continue this is it is easier to convey what is going on to my three daughters without leaving out facts when telling the story three times.

Saturday was a hot, busy day. We all went to the center of San Antonio, parked and began walking to see the sites. Our first site was the Alamo and I am always one that says historical or natural sites are far better appreciated in person than in pictures. The Alamo is the heart and soul of Texas and they treat it with the reverence it truly deserves. The grounds inside were as beautiful as any I saw anywhere in San Antonio. It is the one place in America that truly gives meaning to dying for freedom.

From there we walked over and down to the Riverwalk. Again being there is necessary. The best way I can describe it is that there are two parts to downtown San Antonio. The upper part has the streets, the office buildings and all the hustle and bustle. Then about two levels below are the waterways (river) with sidewalks on each side and cafes, eateries, shops and lots of benches. You can't hear or see the cars or even the streets from the sidewalks. It was hot but mostly shady so we bought a tourist boat ride that gave us a two mile tour of everything. I was glad we didn't try to walk it. After exiting the boat we walked back looking for an eaterie for lunch. They all were so crowded until we finally found an English Pub Theme that could seat us right away. I didn't realise how thirsty I was until she brought our drinks. The service was slow and when we finally finished we headed back to the car which entailed climbing quite a few steps. Joyce usually out walks me easily but she was even dragging by the time we got up to street level. We had to walk a couple of blocks over to get to the parking garage. Did I say how hot it was? When we arrived back at Missy's house we all crashed for a couple of hours.

After refreshing, we headed back out to meet my cousin Gat and his wife Pam at La Fogata. He took us there because it is supposed to be one of the best Mexican restaurants in the area. They have been there for thirty years. Pam's daughter and daughter's husband came also and it really turned out to be a wonderful fun experience. The food was delicious and interaction around the table was really what family is all about. Joyce seemed to enjoy everything. We said our thanks and goodbyes and headed back to Missy's. Needless to say we were all exhausted and went to bed shortly thereafter. It had been a long, tiring but very enjoyable day.

Today we rested and packed. Tomorrow Joyce and I drive back to Baton Rouge and a more sedate way of life. It was a good trip for Joyce and I. I plan to take more as long as she can keep up. I don't think we would be doing this without enbrel injections.
PAL

San Antonio.....Brazilian

San Antonio brings up a lot of thoughts; The Alamo, Texas, The Riverwalk, USAA, the Air Force and prosperity. "Brazilian" brings up different thoughts; Jesus on the Mountain, Carnaval, the Amazon River, beach volleyball, in internet jokes a number greater than a trillion and in thong bikini circles a special wax job. No where in any of these thoughts or recollections are the two associated.
We are visiting in San Antonio with my daughter Missy, who has only been here two months. Last night she suggested we go out to eat and found a place nearby called the Brazilian Steak House. It was an experience we all will remember a long time. No guys!!! Not many ladies serving. Their format is a central buffet salad bar which included marinated asparagus and artichoke hearts along with different kinds of lettuce, tomatoes, sliced onions, various cheeses, dried tomatoes and many kinds of dressings. I can't even begin to remember or describe everything they had but it was all fresh. Unless you had been before all you could say was "what is this?" as you walked around the bar.
After you finish your salad they bring common side dishes to the table while they are giving you clean plates. Garlic Potatoes, Fried Bananas, Fried Polento and some mini cheese bread rolls. There is a little card for each diner that when turned one way it says bring me meat and when turned the other it says "I am taking a break" or "I am through". The meats included lamb, chicken, pork, sausage and beef. Some were cooked whole like a shoulder and some were served bacon wrapped like filet and chicken. It would come on large double skewers from which they would slide or slice off a small portion, usually two to four bites worth. One of your utensils was a small set of ice cube tongs which you used to assist the server with your serving as he sliced it off. There was no limit as to what you ate and you were not required to try everything. If memory serves me well, remember I am a senior, there were twelve different meats and basically all were grilled or braised. The advantage of eating like this was variety first but just as important everything you ate was oven hot. I can honstly say that I didn't eat anything that wasn't delicious. Joyce was restless at first but when they started bringing out the meat we just loaded her up and she sat there and ate everything without once trying to get up.
No offense but I kept thinking that my son-in-law and his friend Kris could probably bankrupt this place in a week. We ate until we just didn't want anymore.
It was a little costlier than I am used to spending out for a meal. It ended up in total about $50.00 a person inclusive but it was well worth it. It was the only Brazilian Steakhouse any of us had ever eaten in. Next time Joyce and I come visit Missy you can guess where we will go eat. San Antonio Brazilian, has a nice ring to it don't you think?

It as an event that I just had to share

Even in trying times, life can really be good.

PAL

Family, Friends and Heros

Surprise, surprise, surprise as Gomer Pyle would say. Less than a week and another entry.
On our way to San Antonio, Wednesday, to visit Missy, Joyce was very calm and mostly quiet. I had a little time to reflect on how far we had come since the beginning of the year. As I thought about it, one thing that kept coming up was FAMILY. Without all of the efforts of our daughters and their husbands there is no way I could have made this happen. All of the encouragement from so many cousins. The numerous friends who constantly offer help whenever I need it. Even though we aren't blood related thry are all family to Joyce and I. In this world there is nothing more important than family. When things get really rough you never have to ask for help because before you could get the words out of your mouth family would know and be there doing it already. Of course I see this thru my eyes and know it was passed down generation to generation. I am one of the fortunate ones who has family and am able to see it work. I really feel sorry for those who don't have that support. As an individual you never really know how you will act until the real situation hits you in the face. I like to think that we all would do what was required if faced with the need. I don't believe hero's are made different than other people. I believe that hero's are just ordinary people who are thrust into extaordinary situations and just do what they have to do. I served with some of those in Vietnam. I have met, through this blog, so many people who are hero's or were hero's who sacrificed for someone they loved as long as needed. Some in need have passed on and some are still in need. This is the way we all should live. I see it on Joyce's side of the fanily as well as on mine. Many times it is just this bond that holds us together day by day. What I am trying to say is even though I am the one in the game I couldn't do this without your everyday support. Just knowing you are there is all that is needed.

Missy says that Joyce is doing well. The trees still get in the way for me to see the forest. It is good to know that what we are doing is having positive results.

Thank You All

PAL

Elephant in the China shop, Pal in the Beauty Shop

Nancy has been Joyce's hairdresser for longer than I can remember. She is a wonderfully sweet lady who patiently keeps Joyce's hair looking nice. Some time back it was apparent that I would have to "sit" with Joyce while she got her hair done. No more running around doing errands without Joyce for that hour. That is ok, I can sit better than I can do hair.

Nancy was in a small salon that made it almost like being at home. About two months ago, Nancy told me her Salon was closing and they were were moving up the road to a larger place that was actually closer to our house. The first time I took Joyce in was a culture shock to me. This place had separated cubicles, settees, sofas, fine upholstered chairs and four or five very attractive young ladies with big smiles to help anyone walking in to find their way to the proper location. If I hadn't known better it could have been a brothel from an old west movie with computers added in. Most of the customers were well dressed (not sure who they were trying to impress) and very prim and proper looking. I certainly provided a contrast walking in being male, older, heavy and dressed in shorts and Tiva's.

It isn't like they can hide me in a corner cubicle. I have to walk all the way to the back to help Joyce find and adorn a smock. Then walk all the way back up to Nancy's cubicle. There must be a Smile School they send all the employees to before they can work. They all bravely kept showing their teeth as we paraded through. After forty-five minutes in the chair we paraded all the way back to the shampoo room. Joyce doesn't like sitting still so I have to gently restrain her so that her hair gets washed and rinsed and her clothes stay reasonably dry. Then it is back through the gaunlet of eyes to Nancy for her to finish up. Actually, Joyce is very calm in the chair while Nancy works. Most probably the comfort of the long term association.

When we finished I still had to pay and Joyce had had enough and headed to the car. I spell "relief" as the look on those young girls faces as I was leaving. Luckily it isn't something we do everyweek. Some times in life you have to be someplace where you just feel out of place like an elephant in a china shop. That describes me getting Joyce's hair done. I think Nancy (bless her soul) sensed what I felt and on the second visit showed me some employee short cuts from front to back.

Joyce is holding her own, neither better nor worse. She has zero inhibitions so she is oblivious to any of the subtle social signs that we all read everyday. Over time the Salon will become more familiar with Joyce and I will feel more comfortable. Life is just a series of adaptations. Hopefully Medical Research can adapt into a cure.

Thanks to all who still follow the blog. Your support has helped more than you can ever know.

PAL

A Funny Thing Happened On The Way To Lake Charles

Everytime a change is made there is always the worry that it is the wrong move. With this disease there is no other way to be but keep trying different ways and meds. Last Thursday was the first injection on the 3 week cycle. To be truthful after 2 weeks I was seriously thinking that we had stretched the time out too far.
Then out of the blue, Joyce mellowed out and responded in a way that just gives you hope. She became much calmer starting Sunday the 5th and remained so all the way to and through the injection visit last Thursday. Even the Doc noticed and commented on how relaxed she was. In addition, she began responding to questions, asked of her, in a more appropriate manner, albeit, just yes and no responses, indicating at least a slightly improved interactive communication. One thing is certain, you have to have patience and give trials time to work before you draw conclusions. For now the 3 week cycle will stay in place and we will observe what develops.

In my younger life I had sufficient experience with dirty diapers. Of course those had tabs and i could physically hold legs etc. to manage removal without making too big a mess. Believe me there is a big problem trying to extricate a messy "depends" from an adult with shoes and shorts etc. Then all of a sudden it hit me . It was so simple, I just keep a large pair of sissors in the bathroom and cut the legs from the hip down on the outside. Presto minimum mess. Hope I didn't ruin your last meal but be sure to file this away in case you ever have to be a caregiver for someone with "depends"'

I want to thank all of you wonderful people who continue to send encouragement and who lift my spirits. With all the troubles in the world, it so refreshing to know first hand how big the human heart can be. God bless you all.

PAL

Monotony Doesn't Have To Be Bad

As we grew up from birth, we learned how to do things. Each of us being individuals, all do things slightly differently. We all do mostly the same things but maybe not in the same order. Upon arising some of us shower while others may shower the night before. Men will brush their teeth, shave, wash their face, comb their hair and get dressed. Women will skip the shaving, and apply make-up but will most probably do this and all the other items much more meticulously. When you are doing these things for yourself it becomes second nature, your mind wanders and you don't even think about what you are doing. When you are caring for someone else you have to think through all the steps and make sure events occur in a logical and workable order. Repeatability or monotony helps very much in the process of getting another dressed in the morning. It also allows you to observe if the person you are caring for has changed or is having difficulty doing things. With Joyce when things don't change, it tells me that she is holding her ground and that the injections continue to work. This is important because we are still trying to find the best frequency. At present we are on a 3 week cycle . If montony holds, we will maintain this cycle.

Thank you for all the prayers

PAL

Time marches on

Last thursday Joyce received another injection. Her response to it seems to be good. We will go back July 9th and see what a 3 week cycle does for Joyce. I still see the improvements gained in January. Joyce has different ditties or sayings she says than before we started but she also will occassionally pick up on the TV or a conversation and repeat a piece of it for some time frame.

She is still eating well and likes to walk up and down the driveway if I let her just go. My problem is that she wont close the back door when she goes in and out, and as hot as it is. that makes the a/c run more. I am sure some of you are horrified that I let her go freely but to date she hasn't ever taken off, even when we are shopping she will eventually find me or the car. I wish I knew what she was thinking when she walks around but in the store if she gets out of sight then sees me later she will walk to where I am.

Unless they develop a new medicine I have resigned myself to the fact that her aphasia is not going to go away. There are times she will respond yes or no to a question but she just doesn't voice her inner thoughts. As far as I can see though she is maintaining and not regressing. Holding the current level is a good thing because it buys us time. Five years ago this treatment wasn't available, five years from now there may be a cure. My hope is that she is still well enough to benefit from it.

Thanks to all of you following this blog, you prayers and hopes are so very much appreciated.

PAL

Forests,Trees, Swamps and Alligators

We have all heard the the obvious statements about goals and directions. "you can't see the forest for the trees" suggesting that you are looking too microscopically at a situation or "when you are up to your ass in alligators its difficult to remember that your objective was to drain the swamp" suggesting that you can get overloaded and forget what you are trying to do. Both of these apply to me at different times, then something will come along and the light comes on. I have told you before that the one ingredient needed is patience in dealing with this disease. God knows I could use a ton more. My middle daughter Missy has been moving from Dothan, Alabama to San Antonio, Texas. In late March she made a stopover and again in late May. The significance of this is that in late May she told me that Joyce seemed better in March than when she left California, which was early in the treatment cycle, and better in May that March. It is very hard for me to see the changes that Missy's time lapse allows her to see. Those trees just get in my way.

We have shifted to a 2 1/2 week cycle on injections, after the next one we will try 3 weeks. In the short term I see improvement and hopefully it will continue. It also helps financially as well not that money was the reason for the change. I just didnt see her improving with the weekly shots. We got an injection yesterday and she seems to be doing better than she did right after past injections. She still cannot express her thoughts so I have to read other signs. She has been much calmer this time than after previous injections.

I wish the best for all those facing the same problem. I hope in some way this narrative can help you. Thank you all for your support.

PAL

Few people really know what it is like

First of all I am not lessening the value of what people do for friends and loved ones with Alzheimer's. God bless you if you do anything. My heading applies to the difference between caring for a lifelong partner versus caring for a relative. I can still remember Joyce as a young, happy, energetic person. She is still happy and energetic. The difference now is that she can't communicate anymore. Life can be lonely even with two people in the house. I am very fortunate that she still knows who I am and does respond to requests but talking to Joyce isn't much different than talking to the television. Her condition has stabilzed from my viewpoint and I will continue injections until some new miracle drug comes along and improves her condition.

Starting June first we are going to a 2.5 week cycle for injections. I haven't seen any change when we went to 2 weeks from 1. We will evaluate as we go and adjust as her condition dictates. She still seems to be holding her progress since January. Thank you all for your support and interest. Sorry there isn't more to report..... PAL

For what it is worth Hope I don't jinx it

We Americans are not a patient lot. We look for and continually try to enact quick fixes. Alzheimer's unfortunately must be the most frustrating disease for us to deal with on a daily basis. Here I am trying I implement a "fix" in 3 months that has taken 4 years to develop. That would truly be an "Americanized" miracle cure. Not gonna happen.
I finally gave up trying to control the incontenance and decided to do 2 things.
First, when Joyce goes to bed she is on her own until she gets up. Yes, I do put a "depends" on her for the night. I am sleeping much better now and getting up less. Since embarking on this approach she hasn't wet the "depends" and has gotten up on her own to go to the bathroom. I will view this as treatment progress since her nighttime incontinace was one of the last things to manifest itself. If I recall it began in November.
Second I put a "depends" on her beneath her panties in the daytime and have quit trying to remind her to relieve herself. She goes to the bathroom when she wants to now but so far hasn't gone a whole day without wetting her "depends". For me, I don't have to wash as many clothes now and I can do other things without interruption. For Joyce, if she continues improving, this may be a training aid to help regain her own self control.
Regarding "depends", I have tried different brands. The ones from Sams Club are too flimsy to hold up to repeated removal and replacement. Depends are good but Albertson's sells one under the name Equaline in a panty style that is great. They also sell some with tabs like disposable diapers but I haven't tried them. Lucky for me, Albertson's has many stores here in Baton Rouge.
It has really been difficult to find a new routine since we returned from California. Hopefully, that is because Joyce keeps slowly improving. Have to keep remembering -one day at a time. It is hard when you are impatient, lol.
We go back Wednesday for another injection.

PAL

Holding on to hope

One thing that is very hard to do with alzheimer's patients is to see change when you are with them every day.
I brought Joyce with me to my tax man recently and he and I experienced about 45 minutes of Joyce just sitting there relaxed with her leg crossed. To regular folks this most probably sounds trivial but Henry, my tax man, commented on how much change (for the better) he saw in her since last year.
We are still on injections every 2 weeks and will most probably continue that for a while.
Regarding her incontinence there seems to be a pattern of increased difficulty about 3 to 5 days following the injection then a significantly less occurence after that.
She remains a "happy camper" and for that we all are grateful. She still seems to respond to requests and instructions reasonably well.
Her aphasia hasn't improved but she will parrot almost any thing and can still spell words if it is stated and she is prompted with the first letter.
I am still hoping that maybe in time her aphsia will lessen.
PAL

After heavier doses

As i said in the last blog we were going to try full doses every week. Even though I saw very small things it appears that we need to spread out now so we are going to full doses every 2 weeks beginning on the first dose after April 2nd. Joyce is holding her own and doesn't appear to be regressing but I will monitor her and see what the extended time does to her. There were no adverse affects from the weekly doses. If anything, right now, even though she roams a lot, she has been much calmer. I can only keep my hope up right now.

PAL

Full and more frequent doses

Missy alluded to Joyces incontenence. Except for that one day she hasnt had any daytime problems. We are not sure what triggered her episodes but she had 3 in 2 hours. That was on the second full day Missy was here and occurred while we were watching some old movie clips we had converted to DVD. I asked the Doc if it could be emotionally related but he didn't know either. Its been 5 days now and she hasn't had a recurrence, either day or night. I just keep monitoring it and hope it stays away.

On Thursday the 19th I drove us to Lake Charles for a full dose injection. Joyce has been tolerating the larger doses very well. The cheapest site for Enbrel I could find is on line. It was cheaper than Sam's pharmacy. Make no mistake Enbrel is not cheap. We had a very smooth trip and on Friday I saw some of the items we saw after the first injection. She walked with me and stayed closer to me without excessive prodding. She will sit and watch TV for longer periods. She still has communication deficiencies but understands many things I ask her to do. No true conversation yet but still her repetitive chatter. She will "parrot" or repeat things said to her or that she hears on the TV. She has gone and readied herself for bed once since the last injection without me suggesting she do it. Only the second time since last year.

While I haven't seen the "miracle" cure I have seen an improvement in Joyce and keep hoping as we continue injections that she will continue with these small but obvious breakthroughs. We are scheduled back Thursday the 26th for another injection.

Thank you again for all of your prayers and good wishes. --PAL

An up and down visit

I was able to visit mom and dad Sunday, March 15 until Wednesday, March 18. These were the last few days before her scheduled injection. During the visit, I noticed many different things about mom since I had last seen her in California. In areas of verbal communication and ability, she seemed to have regressed. She was unable to identify anyone by name the entire time I was there. Her vocabulary is still somewhat expanded from before her first injection, and she will say familiar things and names if you say them to her.

In other areas, I did notice behavior and abilities that I have not seen in a very long time. Due to rainy weather, my hair was a big fuzzy mess. Several times mom came up to me and tried to smooth it down and make it look better. In addition, she noticed and pointed out a large freckle of mine as though it bothered her in some way. She did this 3 or 4 times during my visit. During the course of the visit, mom was much more interactive and communicative (in a nonverbal way) than before. Several times, she handed me the tv remote and pointed to the tv to get me to change the channel. If I found something she liked, she would stay, otherwise she would leave the room. She consistently gave me nonverbal cues about things she wanted, and she appeared to me to be much more opinionated about the world around her than I have seen in quite a while. She was very affectionate and would periodically just walk up and hug me. When I helped her shower, she was able to take the shampoo and soap and use it appropriately without my help. In addition, she took the water nozzle from me and rinsed her own hair.

There were some other issues that mom had difficulty with in which she had not had any problems with for quite a while, but we are unsure if the specific instances had more to due with emotional reactions or distractions with me being there or some regression. Dad is continuing to be vigilant with her about these issues, and there appeared to be a return to normal after I left.

Dad took her the day after I left for her next injection. I look forward to hearing how she continues to progress. I am encouraged by many of the things that I saw.

Michelle

Triche is working so I will update for now

Joyce has settled in now that we are back home. On Feb 26 I took her to Lake Charles, met with Dr Ryder and she received an injection larger than what we had been getting at the end in Los Angeles. There was no adverse reaction. In fact it seemed to me that joyce returned to the good things we experienced right after the first injection. The next day 2 of her sisters came to visit and Joyce displayed emotion that I haven't seen in at least 3 years. She wept when she met and hugged her sisters. Neither had seen her since we returned and both commented that they could definitely see an improved difference in her since the last time they saw her. needless to say I was pleased. Sometimes when you are too close your mind plays tricks on you. They saw what I had been seeing. Many things that have returned to Joyce have stayed.



After talking to Dr Ryder we agreed to try a more aggressive approach which included full doses and more frequent injections. We started today with the first of these and will moniter Joyce for any new breakthoughs as well as any indication of problems. Barring any problems we will attempt another injection on Thursday Mar 19th. I can see a more responsive Joyce this afternoon than the last few days and no bad reactions which is very good.



I hope this helps everyone who has been so supportive following this journey. We have a long way to go. PAL

Long Overdue Update

Mom and Dad have been home about a week now. Dad has an appointment scheduled with the new doctor in Lake Charles for tomorrow. He said Mom is doing well, and seems to be retaining her mental gains. Whenever we talk on the phone he always puts her on and with a prompt she will say hello and call us by name. We will find out more about her on-going treatment after the appointment tomorrow. It has been about two weeks since her last injection, so hopefully we will start seeing more gains after the next one.

We have gotten some feedback from friends and family at home. They do notice a change in Mom, and generally say she seems more focused. I also got an e-mail from one of Mom's friends, I am going to post an excerpt. I hope she doesn't mind.

"I saw your parents yesterday at City Cafe. She recognized me and your Dad told her to say hello to [me]. Which she did. We sat at another table and Joyce started walking
around and came to our table and she patted me on the back. She usually is not
comfortable with being touched. I almost cried I was so glad that she had done that."

I also got an update from Dad last weekend where he said . . .

"Today when I put out the recycle can your mom pointed to the garbage can and I told her to bring it to the street which she did. She stopped doing that before I went to LA"

So we are still noticing changes and improvements. We got a little off schedule with the trip home and the process to change doctors. But the progress is still there and we can get back to regular injections going forward. The potential for her to regain some communication skills is there, and I am so much more hopeful after hearing about her responding to Dad's question with a full sentence on the drive home. It's still in there, I can feel it. We just have to give the treatment more time.

Update - Day 4 after 3rd injection

I spoke to dad today during the drive home. He was excited to report that approximately 30 minutes prior to calling me, he asked mom if she was ok, or if she needed anything. (He said he was being careful not to prompt her because he thought some issues she had may be caused by him bringing up certain subjects.) After asking if she was ok, she looked at him and said "I need to go to the bathroom." Upon hearing this, I just wanted to run around screaming "WOO HOO", but tried to restrain myself on the phone. Dad sounded as excited as I was and said she had not given that type of verbal response/communication in such a long time that we could not even remember the last time we had heard it. She heard his question, understood it, and was able to verbalize her response to him.

Dad also said that while he is seeing many great improvements in two or three areas, in a couple of other areas, he has seen a regression from where she was after the first shot. One example he gave is that she does not stay with him as well as she did the first 5 days after the first shot, and when they are walking he now must hold her hand. We do not know if this is because the Doctor is varying her dosage to find the appropriate amount/schedule for her. We are hopeful that when the Doctors find the correct dosing schedule for mom, that there will be fewer ups and downs.

Once dad is back in Baton Rouge, he will be forwarding videos and additional information for us to continue to update on the blog. Communication will be much easier now, so the information will hopefully flow more quickly again. For now, we are celebrating!

Update for 3rd Injection

Mom and Dad went to the doctor's office today. Mom got her 3rd injection, and they are heading out of town toward home.

Dad said Mom was very antsy at the doctor's office. No telling if it was the amount of time since the last injection or if it was the first time they did an injection without one of the daughters there to help keep Mom calm. But regardless, it went well and she has gotten much calmer after the injection.

On the way, dad tried some verbal spelling where he would give Mom a word like "house" or "Joyce". He'd ask her to spell it and give her the first letter, and she would spell out the word. This is the first time she's done this kind of thing on a purely verbal basis.

Also, at the hotel he had locked the dead bolt and flipped the metal hook over the ball that holds the door shut. When they went to leave, Mom was able to figure out how to open both locks. This is something she was previously unable to do. The doctor told him that was a frontal lobe type activity, and it was a good sign that she is regaining some frontal lobe function. So we are still hopeful maybe some of her speech capacity will return.

I will post more updates as I get more news of the drive home.

Triche

Almost on the Road Home

Hi Everyone! I have been here in California now for three days with Mom and Dad. When we got up the mountain from the airport, it looked like they had gotten about eight inches of snow at the cabin. Mark had to get help from a neighbor to get the car out of the street into the bottom of the driveway. Mark took care of the car and I got to spend time with Mom. We have had fun the past couple of days trying to stimulate Mom's conversation as well as playing cards and Yatzee with Dad. I know Mom was very happy to see me and Dad appreciated the company as well as the help. Mark, my husband and the second Mark son-in-law, has been a great sport and shoveled snow, hooked up snow chains, washed dishes and packed the car! (Ann, you raised a good one!)

Unfortunately, I did not get to see all the improvements that Triche and Missy were able to see while they were here, but I do see some improvements since Christmas. Mom will repeat words when at Christmas she would completely ignore me, she takes direction some of the time and she is very engaged in what we are doing. I sat at the table with her and wrote names and drew pictures for nearly an hour on Tuesday and Wednesday. I have to tell you, I couldn't believe she sat still for so long. She also stayed there once Dad sat down to play cards and watched us for a good length of time both days. She couldn't write any words or call any shapes by name as reported previously, but she would repeat things I said directly to her. Once we started playing cards, she flipped through my notebook over and over again looking at our work. She has started with her high pitched chatter again and she also doesn't follow directions as well as Missy and Triche described any more. This is all part of the dosing requirements. They have to let her regress to understand and calculate her correct dosage. I am just glad I was here with Mark to visit, help and get Dad and Mom packed and off the mountain!

We are in Santa Clarita tonight. Mark and I packed the car and Dad drove us down late this afternoon. They moved mom's last treatment to Friday and Dad will be starting his trek home afterwards. Mark and I will be heading to snow ski with our good friends who live just south of LA for the weekend and flying home Sunday as planned. I am so glad I got to come and spend this time here. The doctors say that mom will show some improvement for the next six months. I truly hope that these improvements give Mom and Dad a better quality of life.

Thanks for supporting us and following the blog.

Danielle

Week 3 Update

I apologize to everyone for not posting sooner. I have been sick, and out of town.

Mom went for her 3rd appointment on Monday. Dad said the doctor decided not to give her an injection this time. He needed to let her go for a while and see where she started to regress so he could get an idea where her dosing needed to be. Dad told me when they walked in Dr. Maier said "Good Morning" and Mom responded "Good Morning". That was certainly something new.

They have been working on her regular drills, and she has been doing well with the basic stuff. I just spoke to Dad and Danielle, and they are now starting to see the regression. There are times when she will sit still with them, but she is more agitated (walking around and chattering more), and some of the newer things have now gone. She is not identifying anyone when asked "who's that?", not writing or saying words when shown words written on a piece of paper, and not following verbal instructions as well as she was previously. Hopefully the timing of her regression will give the doctor the information he needs to zero in on the correct dosing.

The one positive thing that I see about this week is . . . they let the level of medicine decrease and the improvements regressed. But people are still working with her the same as we have been since day one. That tells me the improvements were due to the treatment, and not due to the extra attention she has been getting from all of the family. I am convinced that the treatment really does work. It is not placebo. It is not some artifact of being treated differently.

The doctor told Dad that there will be no WOW improvement with any subsequent treatments, but they can look for subtle and gradual improvement over the next 6 months. We saw important improvements at each of the first two treatments. So hopefully with 23 more weeks we have a lot more to look forward to.

The last visit will be next Monday, then they will be heading home. I know they will be glad to get back to their house and their friends. Another 8 inches of snow fell last night, and more storms are on the way for the weekend. So I think they will be packing up and heading south for the weekend. Danielle will be there through Friday so she and Mark will help them pack.

If there are any changes I will do another post. Otherwise, I will probably post again Monday after Mom's next appointment. So please don't worry that something is wrong if you don't get a post this weekend. Everything is going very well and we are on the right track. They will pick up the treatments with a local doctor and I will probably start posting after each treatment once that happens, and will let everyone know the final treatment schedule. But if you have questions in the interim, please feel free to post. I get an e-mail with every post and promise I will respond!

Triche

Update for 2nd Injection - Days 5 and 6

I just spoke to Dad. They are snowed in again at the cabin. The weather is just breaking, and he's hoping they can get out tomorrow afternoon.

Mom is holding her own this week. She's doing great with her normal drills. Dad is still working with her on our names, and she got on the phone a couple of times and said "Hi Triche!" with a prompt from Dad. She is also doing her writing again. She wrote some words when Dad would write them. But she also starting doing something different. When he wrote "Joyce" she wrote her maiden name instead of copying her first name. I don't know what that means, but it wasn't nonsense letters, and it was a logical thing to write. And no more accidents so far this week! (I can't help myself but report the facts).

Dad is also working on some other things now. He will ask "what is your birthday" and start with the month, and she will respond with the full month/day/year of her birthday. He'll do the same with their address, he'll start and she'll give the number and street for their address. It still looks like she is re-learning things as he works with her.

Fortunately, this week with the 2nd dose, whatever amount it was, she doesn't seem to be regressing any at the end of the week. That is good news.

Update for 2nd Injection - Day 4

I'm reporting second hand today via Missy.

Dad says that Mom had a very good day. He was excited about something that happened last night. They were eating cheese and crackers, and they got down to the last piece of cheese. He told Mom "that's the last one maybe we should split it." He said Mom picked it up, bit off half, and handed the other half to him. Obviously she understood what he was saying and acted on it. It is impressive to me, because it wasn't a direct instruction but rather a suggestion and she figured out what to do. There is definitely some rational thought going on inside!

Last night they also watched TV and she was very calm, relaxed and was able to sit and watch the TV for an extended time with Dad. Each evening before bed, and each morning after they get up Dad runs through her mental exercises (ABC's etc) and Dad said she is now nailing them. He is sure that she is re-learning. Perhaps he can reteach other skills that she has recently lost, or things that she used to be able to do to help him.

There is no doubt Mom is improved from these treatments. Many of the changes are subtle, but they affect her attention, her focus and her reasoning. And in total are improving her quality of life, and will improve Dad's quality of life. Still hoping the improvements continue.

Triche

Update for 2nd Injection - Day 3

I am sorry if yesterday's post had more information than some would consider appropriate. I'm trying to be objective in my documentation and seem to have pushed the envelope yesterday!

Dad sent us an e-mail with his updates, and I talked to him this evening. Mom had a good day today. It was a quiet day at the cabin for the most part.

Dad worked with Mom on her counting, ABC's, days of the week, and added the months of the year. She did well as usual with all of them. He also worked on saying "I love Triche, Missy and Danielle", which is a little more complicated. She actually did very well with it. He said he will prompt with one name and she will say all three now. Dad's comment was that it seems she can relearn what is in her prior memory. So he'll keep working with her on various things and we'll see how far she will go!

Update for 2nd Injection - Day 2

Today was a hard day because I had to fly back to North Carolina. Mom and Dad are on their own again this week, until Danielle arrives next Tuesday.

It was very sad saying good-bye to them, but Mom gave me a big hug when I was leaving. A small thing to most people, but hugs are one of those things that have returned since we started treatment and each hug is so precious to me.

I called Dad tonight when I got home to get the daily update.

Dad said Mom had a tough time during the middle of the day. She hasn't been having lots of accidents since we got to California. We had a few immediately after the 1st treatment, then only a couple since the second day after the 1st treatment. Today they went to a place for lunch, and Mom had one "more major than most". Probaby too much information, but it's important only in that we are trying to figure out what happened. Stressors for the day could include the fact that I left that morning. It is also possible she ate something that didn't agree, and it came on her all of the sudden and couldn't react fast enough. So we won't make too much of this if it is a one-time deal, but as always we will watch to see if it is unique or a pattern. Dad gave her some Imodium and we wait and see.

He said he worked with her normal drills - alphabet, numbers, days of the week - and she did well and is still retaining those. He also worked with her on people's names. When Missy called to talk he gave Mom the phone and told her to "say hi to Missy". Mom said "hi Missy" into the phone. Not really conversational, but definitely something she would not do before. Missy was thrilled just to hear Mom say her name.

Dad reports that mom is following directions well. When he showered her after "the accident" she actually stuck her own head under the water to wash her hair. This is one of those lifeskills that we reported earlier she wouldn't do for herself. This time, she took the initiative to put her hair under the water - great news and a great improvement as any of us who have showered mom can attest.

I will try to keep the updates going from home. I can't promise daily updates, but hopefully at least every other day. I will call Dad every day and ask for updates. But it is very hard to take care of Mom alone, and keep detailed notes on progress at the same time. So we will work with the situation we have, and report as time permits.

Thanks to everyone who has been following this and supporting us! We read all of your comments, and though we don't always have time to respond your notes are very appreciated.

Triche

2nd Enbrel Injection Today

Check out our new video . . .

New video of Mom identifying Dad by name today!!!!!

1. When I gave Mom her shower last night, she washed her own hair and rinsed it, and washed her upper body herself. She also dried herself. Her improvement in this area has sustained.

2. Mom had her second Enbrel injection today. We met with Dr. Tobinick for a while. If we were going to be in California longer, he would have waited until next week before giving the 2nd injection to see how fast she declined. This would have been to help gauge what the appropriate dosage would be. However, Mom and Dad are only staying for 4 injections, so he modified the dosage and gave her an injection today.

3. During the evaluation before the injection Mom did very well. Her ABC’s, counting and days of the week were much better than before the 1st injection. She also identified both Pal and I by name when asked who we were. She also was able to do the folded paper test, where they give her a blank sheet and ask her to fold it in half and place it on the floor. She was not able to do this test during the first appointment. During the injection she did not flinch, and laid calmly in the face down / head down position afterwards. This injection was much easier on Mom than the first one. After the injection we didn’t see much immediate improvement. Mom does get tired of the questions and drills, and we did everything in a much tighter time frame today. She was showing signs of being tired before the appointment, and was very tired afterwards, so I was not concerned that we didn’t get that WOW improvement in the doctor’s office the second time around. However we did start seeing improvement after we left.

4. I have noticed today Mom is picking up many more random words that she hears or reads and incorporating them in her chatter. She is talking about Joan and Pat (her sisters) much more. She used to do this a lot last year. She is also reading words off of road signs or hearing words in songs and picking them up. We passed Ronald Reagan Fwy, and she chatter about Ronald Reagan for a while. Then it was Budweiser, Carl’s Jr., Normal, etc. . . We also heard a song walking out of Chili’s that said something about “love” and she said “I love you” for quite a long time. We mentioned it was Danielle’s birthday today, and she chattered about Danielle’s birthday for a very long time. We saw this to a lesser degree last week, but she’s holding onto the words longer today.

5. Missy is in a slide show/audio presentation on the INR website. Follow this link, then click on her image at the bottom of the page. Dr. Tobinick showed this to us during the appointment today. Link to the INR Slideshow

6. Tonight we did some work with Mom identifying us when we asked. She consistently identified Dad when I asked “who is that?”. I spread it out 5-10 minutes apart between attempts, and she correctly identified him as Pal or Daddy 5 out of 5 times. Impressive to me because I think I have seven instances of her correctly identifying any of us over the entire first week (including her identifying Dad and I immediately before the 2nd injection). In addition to the five times with Dad this evening, she correctly identified me several times on the drive back home and both of us at Chili’s. Over the past year she has rarely identified anyone by name, so this is a dramatic improvement.

Day 7 Update

1. Dad tried writing some words and having her write them today. She did not do well, and went back to writing random letters. We think the medicine is starting to wear off, and she is regressing just a little.

2. Dad also did some counting and ABC’s today, and said Mom did pretty well with that. They also practiced the names on the powerpoint, and she did well with that also.

Tomorrow we get to go back to the clinic for Mom's second treatment. Here's hoping for more progress.

Day 6 Update

1. When Missy left yesterday, I swear I thought Mom was going to cry for a minute. And she kept repeating “I love you too” for a long time. That was what Missy told her when she hugged Mom good-bye. I think she understood Missy was leaving.

2. It’s been a quiet day. Mom has been pretty calm. I drove out to the park to see if she wanted to walk around, but she kept walking back to the car. So I figured she wanted to go back home. I think yesterday’s restlessness has passed. She's been sitting with Dad and me on the sofa watching baseketball. Occasionally she'll walk to the back of the cabin, and come back. But she still has not tried to leave. I hope that one sticks, because it was very difficult last summer trying to keep her in the condo when we were on vacation.

3. We probably won’t have much new news until after the treatment Monday. But if something happens, I’ll be sure to post it.

Day 5 Update

1. Last night Missy gave Mom a shower. She did a much better job washing herself, washed and rinsed her own hair, and dried herself. She was significantly improved from when Missy gave her a shower before her first injection. Mom did nothing to help the first time. Mom also was fixing her part while Missy was doing her hair.

2. We realized Mom hasn’t tried to leave the Cabin unless Missy was standing on the porch. Last summer at the beach, we had to barricade the door because she would zoom out at every opportunity.

3. We went to drop Missy off at the airport today. Mom did really well on the ride out. We stopped at the LaBrea Tar Pits to visit the museum after the airport. She seemed to enjoy getting out. Once I had been holding her hand and she wanted to walk into the other room, so she pushed my hand away and walked on, but she didn’t run off she just wanted to go into the other room. We also sat in the movie in the museum and she did real well in the movie. We went to eat, then stopped at Macaroni Grill on the way home for dessert. She was more anxious, and really wanted to get up from the table. I don’t know if it was the long time we had spent in the car today, or if the medicine is starting to wear off (it has a 5-day half-life). But I did notice in most of the places where we stopped, if she walks on, she is now stopping and looking back for us and not just taking off. Even in the smoothie store on the way out, she would wander around looking but never tried to go out the door. So even in a more anxious state, she is better than she was.

4. We went to the internet café for Dad to check his e-mail. Mom is still very agitated, and wanted to get up. I took her walking around for about 15 minutes while he worked. I wonder if mom is so agitated because Missy left today, and she’s looking for Missy. I guess over the next couple of days we’ll see if she settles down, or perhaps if the medicine is wearing off.

Update for Day 4

1. This morning we did the name flash cards first thing and Mom did very well.

2. We recorded follow-ups to some of the tests done before her first injection (alphabet, counting, days of the week) which we included with the posted videos today.

3. We tried writing the names and having Mom write them as well. She wouldn’t do it for me. She wrote “Mom” for Missy, but that was it. We had been doing other things earlier so we don’t know if she was tired, or if it was the lined notebook paper instead of wide butcher paper that was the issue. Dad tried later and she was able to do 4 words.

4. Missy went outside, and Mom wanted to go. So I got up to help her find her coat and put it on. Dad’s coat was hanging on the back of the chair. I picked it up and said “is this your coat?” Mom said “No, that’s Daddy’s coat.” I think this is the first full sentence / answer to a question that I’ve heard in a very long time.

5. Mom has been restless today, and pacing a lot. The cabin is small. I took her for a walk, which helped some. We will get to road trip tomorrow, so hopefully getting out will be good for her.

6. Mom did really well with the list of clothing items that we’ve been working on today. She got all 6 of the items on the list today. When we first started earlier in the week she struggled with the whole list (shirt, pants, shoes, hat, socks, purse).

Finally! Some Videos!

We have been working hard trying to figure out how to make videos. These are amateurish, but get the point across. Mom is still doing well. She sits with us for long periods of time, and wants to be engaged in what we are doing. She is still following verbal instructions well. Some of the activities are hit and miss, she will do it sometimes but if she is tired or we do to much she gets frustrated and wants to stop. So we are trying not to push too hard and just let things happen.



This picture was taken at Macaroni Grill yesterday. They put butcher paper on the table and Missy took a crayon and started writing names. Mom does better with names of familiar people. Missy would write a name and Mom would write it underneath. Note Missy would write in proper case, and sometimes Mom would write her letters differently. So we know she wasn't just copying. Mom would also say the letters out loud as she was writing, which Missy did not do. We tried this again this morning, and Mom only did one name with Missy, and wouldn't do any with me. I don't know what was different, other than we had been playing some other games beforehand so she may have been tired, or it may have been we were working in a notebook with lined paper and multiple pages. We will try to figure it out. Like I said, some things are hit and miss. The time of day or what else is going on around us seems to make a difference.

Here are the videos we've got so far

Mom saying the alphabet - before and after

Mom counting backwards - before and after

Mom saying the days of the week - before and after

Mom doing the name flash cards day 4 after 1st treatment

Mom following gentle verbal instructions day 4 after 1st treatment


Note to Aunt Pat - if there is something else specific you want us to video please let me know!

We'll be posting more later! Today is Missy's last day here, so we are hoping to get out and do something fun. I want to go to Disneyland, but that may be too much too soon. So maybe we'll go looking for movie stars . . .

Triche

Update for Day 3

1. Mom came over and sat by Missy (who was on the computer) like she wanted to play our word games again. Missy told her no, we need to wait for Triche or she’ll be mad. Mom started walking into the room where Triche was sleeping, repeatedly, like she wanted her to get up. We can’t be sure, but we think she was responding to Missy saying we need to wait for Triche to get up.
2. We looked at a lot of pictures of the family today. It’s not clear whether she was able to identify other family members. But at random when a picture of Mom would come up, she would frequently say “that’s me!” I believe she was able to identify herself in some of the pictures, because it was happening after she had not been in a picture for quite a while.
3. A couple of times Missy pointed to Dad and Mom said “there’s Daddy”.
4. When Missy and Mom went to the restroom at Macaroni Grill on the way back Missy just stopped and said “where’s Dad and Triche”. Mom looked around, located us in the restaurant, and walked straight to us. She is definitely following directions better.
5. Mom wanted to get up from the table at the restaurant, but if I would just say “wait”, she would settle back down in her seat. So it is definitely much easier to keep her in one place than it was.
6. We were at Macaroni Grill, where they have the butcher paper and crayons on the table. Missy wrote “MOM” on the table. She gave Mom the crayon, and Mom looked at the word, said “Mom”, then wrote it right underneath. Missy also did “Missy”, “Richard”, “Joyce” and a couple of others. Mom did the same with every name. And it was interesting because she didn’t just copy what Missy did, she made the letters they way she writes (Missy might write Richard, Mom would write RICHARD in all caps). And Mom would say the letters out loud as she was writing them, Missy didn’t do that. It was surprising to me because I had tried the same thing with her at Christmas and all she would write was random letters. She never wrote a word, much less write the same word I wrote.
7. Mom sat with me while I was editing videos this evening. She really enjoyed watching the videos. She was counting, saying ABC’s and days of the week along with the videos, mostly doing it better than she had done it originally. She has a lot more patience and a longer attention span, sitting with me for a couple of hours watching me work on the computer.

Official List from Day 2

1. Mom got up at 7:15, which is very early for her (recently been sleeping until 9:30 or so). She has been sleeping late here since we arrived, but can’t be sure if she’s still on Central Time or this is a change.
2. When she walked in, she saw Missy and said her name this morning.
3. Dad asked mom to give us a hug. She walked over and hugged each of us. Recently, even if we walked over to hug her, she would frequently just stand there like she didn’t understand.
4. Mom is switching to the correct pronoun when she responds to something we say, instead of just echoing what we say. For example we were looking at pictures and said “That’s you and Evelyn” Mom responded, “Yup, that’s me and Evelyn.”
5. When reading people’s first names, she is adding their last name on her own. For example she sees Michelle and says “that’s Michelle Haire” or she sees Pat and says “that’s Pat Graham”.
6. She is hearing and understanding suggestions with no prompts or repititions.
7. Mom is sitting with us for longer periods of time before she wants to get up and move around.
8. She came in with her shoes and said “I’m putting on my shoes too”
9. Missy walked over to the sofa and Mom moved over to make a space for her without being asked.

Pal Says

Been a good trip so far. Please bear with us. We have been snowed in a cabin with very limited (in and out)internet access and no cell phone service. We can call out with Phone card but really cant get to everyone. Whenever we get to cell service and a good internet connection we will do a lot of communication. If you want to send us a message send an e mail. We will read it. The weather is breaking and and we are encouraged with the progress we are seeing with Joyce.

(written by Pal)

Day 2

We have been stuck in the cabin all day, so we couldn't get out and take Mom anyplace. Probably just as well because we are all tired after a hard couple of days.

Missy and I have been trying different things just to see how Mom does. Today she was counting to 20 pretty well. We also got her to sing her ABC's and to say her ABC's, in stages (A-G, H-L, M+) Missy then tried getting her to count backwards, which she did well. She was also able to count to 50 by 5's and to 100 by 10's.

I set up some flashcards in Powerpoint. I did one set with names of people we know. We have about 20 names, and she'll get 80-90% of them when we go through them. The more we do it, the less interested she gets. But when we pull it up fresh, she flies through it. We also did numbers (written out, not numerals) and she does 1-10 very well. We also added some random words like beach, diet coke, breakfast etc. which she did well with.

She came in earlier with her shoes and said "I'm putting on my shoes too". When Missy walked over to the sofa by Mom, Mom scooted over to make a space for her to sit. These are small things, but new for Mom.

Hopefully tomorrow we can get out of the cabin, walk around, and do some normal things to see how she responds.

Short Summary of 1st Enbrel Treatment !!!!!!!

We had our first doctors appointment today. During the initial evaluation, the doctors told us mom had some definite positives and definite negatives going into the treatment. She does not have traditional Alzheimer’s. Her condition is more frontal lobe, not Pick’s disease but similar. She had early onset, rapid progression, and some familial history. All of these are considered negatives as far as the success of the Enbrel treatments. However, some of her frontal lobe type symptoms (communication issues) usually respond very well to the Enbrel treatments. Had she been an elderly traditional type Alzheimer’s patient she would be almost assured of some improvement. With her condition, all we could do is try it and see. They said a much higher percentage of patients like Mom do not respond. We felt like they might be preparing us for a poor outcome.

Her baseline MMSE score was 0. The doctors said they had no idea how far below 0 it might be. So it would be hard to measure improvement. We will have to rely a lot on quality of life improvements and subjective assessments. They did comment that her life skills are actually much better than you normally see with such a low MMSE score. So Mom is a very unusual case. In some areas she shows good cognitive skills because of the things she does, but her complete lack of communication makes her almost impossible to test.

We did the injection, then waited to see what happened. Within 15 minutes, Missy came back from the bathroom with Mom and Missy was crying. She had seen some changes. I think the doctors were as surprised as us. They pulled out the video cameras (as did Missy) and started filming (there were 3 video cameras going at the same time). Over the course of the next 1 ½ hours we noted a number of subtle, but definite improvements in Mom. I would not call it miraculous, but I would call it a significantly better than expected result.

Noted Improvements Immediately After 1st Injection (within 1 hour)

1. (Missy) Immediately after injection, I took Mom to the restroom. Stopped, looked in the mirror, and fixed her hair that had been messed up while laying on the inverted table for the injection (doing her hair is new). After done, she started out of the bathroom. I said “Mom wait for me” and Mom stopped and waited. Normally, Mom does not respond to quiet verbal requests, and you usually have to use her name (Joyce) to get her attention. This time she responded to “Mom”.

2. (All) Before the injection the doctors had her count from 1-10, say the days of the week, and say the ABC’s. She could count slowly to 10 with prodding (counting, or a head bob for each number) forward and backward. She said A-G on the ABC’s but always stopped. She could say the days of the week in order with prodding, but not backward. After the injection her counting, ABC’s and days of the week were all much quicker, and without prodding at each step. You only had to say the first item, and she would continue the rest unaided. (funny item – if she happens to stop at L and you restart her, she follows with L – S – U ). She is still not saying more than 3 days of the week backwards.

3. (All) Before the injection she did not consistently identify any members of the family when verbally prompted. She identified Triche once. After the injection, once she identified Triche unprompted (“hi Triche”) when she came back into the room. Once she identified Pal as “Daddy” when asked who he was. She used to refer to him as “Daddy” when talking to us several years ago, but hasn’t in the past 3-4 years.

4. (Triche) I took Mom walking the halls when she got restless. Normally, she walks off and we have to try to keep up. While walking, Mom kept pace with me and we walked side by side. I intentionally sped up and slowed down to see if she would continue to keep pace, and she did stay by my side. We noted when we left the clinic, she walked out to the parking lot side by side with Missy, keeping pace with her companion. We did not have to hold her hand to keep her with us.

5. (Triche) Mom and I walked back into the room after the walk. Mom sat down in the chair, then looked at me and pointed to the chair next to her for me to sit down. I haven’t seen that type of direct communication in two years.

6. (All) Mom appears to be adding some additional words to her repetitive phrases. Yesterday it was primarily “I like LSU” and “I like Squeaky’s”. Today she has added back “Joan Cocke”, “Pat Graham”, and “City Café” to her words.

7. (All) Mom appears to be using the high pitched little girl voice less, and her normal voice more. To all she seemed more relaxed and more engaged with the people in the room. She looked around and made eye contact more. At one point she leaned back in the chair and crossed her legs (something we haven’t seen in a very long time). Instead of a vacant stare and random laugh, we did see smiles that looked like mom used to look when she smiled, with direct eye contact with an individual while she was smiling.

8. (All) Mom is responding to quiet requests/verbal commands much better than before. Generally she will respond to a single request now, where multiple requests with a more forceful tone of voice were required before. We would ask if she would sit back in the chair, and she would sit right back down. Before the injection, we would have to put a hand on her arm or leg and nudge her back to the chair to get her to sit back down. Of course, an hour full of evaluation after the injection (plus 2-3 hours of evaluation before the injection), she was tired of being grilled and made it plain she wanted out of the chair and to leave. Missy figured out she needed to go to the restroom and took her. She did sit back in the chair afterwards, but was restless at that point and didn’t want to stay in the chair. We will check this again tomorrow when she is rested and has not been through hours of evaluation.

Thanks for all of your support - Triche, Missy, and Pal

Good News

I'm updating the blog with second hand information, but I wanted to let everyone know what today's progress was. I spoke with Missy an hour or so after Mom's first treatment and they have seen some positive signs. The little things are what caught Missy's attention and I will try to list a few:

1) Mom stopped to fix her hair in the mirror when Missy took her to the restroom after the injection. I can't remember her doing that at all this year in her visits to North Carolina or my visits to Louisiana. Actually we laughed in June because Dad had gotten a baseball hat with Joyce embroidered on the front for her to wear on the day's Dad didn't fix her hair.

2) In the pre-tests when reciting her alphabet, she could only go through about 4 or 5 letters without additional prompting. After the injection she made it from G to W with no prompting.

3) While we were talking on the phone, Missy told mom she was on the phone with me using my name - Mom responded immediately 'I like Danielle too'. I don't recall mom saying my name the entire time I was in Louisiana at Christmas no matter how hard I tried to prompt her.....It really touched me to hear that on the phone.

The doctor said some patients see continued improvements over the first 24 hours and even days following the treatment. Hopefully Missy & Triche will have good news and more detailed updates for us tomorrow on Mom's progress.

Danielle

On the way to the doctor's office

We are all up and nearly ready to go. We have the video camera and a notebook to record and document any information or progress that is relevant. Our cousin, who is a physician may meet us there, but we have had difficulty connecting since our arrival. Now, when we want to be connected more than ever, we have had no internet or phone at the cabin. At least staying at the hotel last night we have been able to update everyone without driving 16 miles!

Video of Mom Before Treatment

http://www.youtube.com/watch?v=EDBqAoAHkYQ

I uploaded a video Dad made of Mom before her treatments. It is also in the links list. Hopefully we will be able to add a better video tomorrow :)

Tomorrow is the big day

I thought we'd be resting today after our long trips, silly me. We all woke up very early this morning thanks to the time zone difference. After killing what seemed like hours, it was still only 9:00 am. We had made a list of important items to buy so we packed up and headed to Wal-Mart - which is 51 miles from our cabin. There is one other small market and gas station closer, they are only 16 miles away.

We managed to get everything, except the tire chains. Seems there is a snowstorm that is supposed to hit tonight. The cabin is up a winding road high on a mountain. We were told NO ONE is allowed on the road when it snows without tire chains. So we headed back to the hardware store 16 miles away and bought what they told us were the correct chains for our tires. Missy and I thought we were just incompetent at putting the chains on the tires. But then the caretaker for the property showed up and said they were the wrong size. Too bad the hardware store was closed by that point, and they were going to be closing the road soon. The real estate agent tried to find us some chains, but couldn't. So we had a decision to make. Do we wait and hope the road is clear, or head for lower ground to make sure we can make the appointment? Not much of a decision for me, we packed up and checked into the Comfort Suites in Valencia, California. Had a nice dinner at Macaroni Grill after we arrived.

I'm kind of glad we had such a hectic day, it kept us distracted. I'm really nervous about tomorrow. It may sound strange, but there is a part of me that doesn't want tomorrow to come. Up until now we have had hope. Tomorrow, it is either going to work or it will not work. There's a kind of finality to it. Please let it be the outcome we want.

We made it!

Missy and I are sitting in the "Flying J" truck stop - the closest hot-spot - eating dinner. We arrived at LAX this afternoon, and are headed toward the cabin. Mom and Dad arrived at the cabin earlier today. We'll have one day to rest, and hopefully put together our "before" videos before the first treatment on Monday. It's hard to believe we discussed this about a month ago, and we're already here. A lot has happened since we were home at Christmas. I can hardly believe it has come together so quickly, and suddenly we're here.

Almost There

I spoke to Dad tonight. They made it to Blythe, California today, and have about a 4-5 hour drive left. Missy and I leave in the morning and should meet up with them in California tomorrow evening.

Dad said to say thanks to Gat for recommending VRBO (site where he found the cabin). Also, he very much appreciates the liberal speeding limits in West Texas, New Mexico and Arizona. He noted there were at least 4 skunks from San Antonio to El Paso - counted by smell not sight. And thank goodness for the Popeye's Chicken restaurant in Arizona where they ate lunch today.

He was welcomed at the hotel in Blythe by two gentleman shouting "Geaux Tigers" thanks to Dad's standard uniform (LSU t-shirt).

Mom must be enjoying the trip because every time I talk to him, I can hear her laughing in the background.

Almost there. . . just a few more miles and a few more days.

Lots of Miles to Cover!

There are lots of miles to cover over the next month both physically and emotionally. Dad has started packing and the rest of us have gotten plane tickets. Triche and Missy are going to LA the first week of treatments and I will spend the last week in LA with Mom and Dad. I have set up a google map to track points of interest for our journey. I'll be updating the map with key milestones and their locations so you can follow along!



View Larger Map


It is somewhat surreal to be planning a trip to California in just a couple of weeks. But, I want everyone to know I am grateful for the wonderful friends and family in my life who have been so supportive and accommodating. (I'm so sorry I had to cancel our trip Shannon - we look forward to seeing you in April!)

The countdown has begun!

I got an e-mail from dad tonight. He said "The Roller Coaster has left the station so hang on to your hat lol. gonna be a fast and furious ride from here on."

Mom's tests all came out fine. He shipped the packet of information to California. He then had a phone call with Dr. Maier at INR, who went ahead and scheduled her appointment for 10:30 am Monday January 26. Dad said he is 99% sure that will stick. The only thing that could happen would be if the doctor saw something odd in her medical records next Monday. We do not expect that to happen, mom is very healthy.

I am working on booking flights. Dad has already lined up a place to stay for a month. Time to rock and roll! Once we get the 100% all-clear, I will post the final go. But for me, the countdown has begun, and I am so excited I doubt I'll be able to sleep tonight.

Discussion board for Enbrel treatment of Alzheimer's

My Aunt sent me a link to a very good message board about Enbrel treatments for Alzheimer's patients. It has many posts from people with family members who are having these treatments. I am reading through it now, and will also post the link in the links section for this blog.

http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/4081064272/p/33

Don't Expect Much From Me Here

Having to be the one getting all the stuff together I have one suggestion for anyone in my shoes. If you don't have one, obtain a medical power of attorney as soon as possible on the person who needs treatment. This allows you access and signature priveleges for anything medical that comes up. A durable power of attorney for other matters is also a good thing.

Right now I am just the mule that pulls the wagon. I have enough to deal with in the near future so Triche will have to be the one to give all the updates. Maybe later , hopefully, I will have more time, if you know what I mean. Until then I just hope this turns out successful, not only for us, but for those who have a vested interest in following this blog.

Moving Along

Dad is really moving fast on this. I think the last big thing we need is a TB test, which will happen next week. If scheduling works out, all of the information will hopefully be collected by January 16, and shipped out to California. Assuming everything looks good, we should be able to schedule a few days later and make our travel plans.

Dad has already found a place for us to stay in the Los Angeles area, and is preparing his packing list. It will be a long drive for them, but fortunately we have friends and family on the route so they can stop and have some visits on the way. And thankfully, airline tickets are pretty reasonable right now, so I can fly out and be there with them.

Here's hoping for a negative TB test . . .

More Information on Enbrel Treatments at INR

According to the phone conversation with the clinic, Dr. Tobinick has treated over 3000 patients over 4 years. They have had very few non-responding patients (I do not know the exact number). There are potential side effects, which only occur in 1% to 2% of patients. You do not have to go to California to begin treatment. There are doctors in other areas of the country who have been trained by Dr. Tobinick to do this treatment. You do have to do a phone consult at a cost of about $500 to get the list of physicians in your local area who have been trained.

Contact Information
Lynna Sim & Lesley Lemus
Institute for Neurological Research, A Private Medical Group, Inc.
100 UCLA Medical Plaza, Suites 205-210
Los Angeles, CA 90095
ph: 310/824-6199
fx: 310/824-6196
email: simlemus@gmail.com

Preliminary tests required before the initial medical evaluation at the clinic - exact text of the request from INR:

We recommend the following tests be done prior to receiving treatment with us. Please discuss with your local physician the advisability of having these tests done.

-Labwork:
Hemoglobin A1c
BUN, Creatinine
Serum Vitamin B12
Serum Folate
Free T4 Index
VDRL (or RPR if VDRL not available)

-MRI of the brain without contrast (or, if not possible, CT of the brain without contrast) taken at any point.

-PPD test for tuberculosis exposure (unless results of this test were negative within the last five years)

-Summary of previous medical records from your neurologist.

-These results need to be within the past 6 months:
Complete blood count
Chest X-ray

Our Journey Begins

Mom was diagnosed with Alzheimer's disease 3 years ago at the age of 62. We believe the symptoms started around age 60. Alzheimer's is a cruel disease that devastates entire families. My mother is a wonderful woman, sweet and warm. She has always been a joy to be around. This disease has robbed her of her communication skills, and a connection to the people around her.

Her disease is moderate. She still functions fairly well, and is able to take care of most personal needs on her own. However she has lost the ability to hold a conversation or engage in any type of meaningful personal interaction. She paces through the house constantly, and chatters using the same three or four phrases repeatedly. More recently she has started wandering off if not watched, which worries all of us. She still lives at home, and my father is her primary caregiver. He is doing a wonderful job, and she is safe, apparently happy, and healthy. But all of us feel a great sense of loss.

Several months ago I found an article about a doctor treating Alzheimer's disease using Enbrel. Enbrel is an FDA approved arthritis medication, but it is not approved for use with Alzheimer's disease at this time. According to the article, the doctor was achieving significant improvement in symptoms with this treatment. I sent the article to my father, who filed it away with the many other articles he has received.

Just after Christmas 2008, my sisters and I were at home visiting my parents. We went one afternoon to visit an aunt who lives in town. Over the course of our conversation, she brought up the treatments I had read about. Since this aunt is a doctor, she had my attention really quickly. She saw great potential for this treatment. She explained that it was "off-label" meaning they were using the drug for a disease that it was not approved to treat. So the treatment would probably require some form of waiver of malpractice, and would not be covered by insurance. However, she insisted that if it did indeed work, it was our best hope of finding anything to help my mother.

Armed with new found confidence after speaking with my aunt, I headed back to my parents' house and did what all computer geeks do, I got on the internet. I was able to find the clinic in Los Angeles doing these treatments, along with contact information. I also found numerous you-tube videos posted by families with family members receiving these treatments. Links to both the clinic, and the videos are in the links section. There are also many articles on these treatments. They are listed as Enbrel treatments, Etanercept treatments, or Anti-TNF treatments - all mean the same thing.

Armed with a pile of information, I went to talk to my father. My enthusiasm, and my aunt's enthusiasm meant nothing if my father wasn't interested. He is her caregiver and he makes the decisions. We discussed the treatments and I showed him some of the videos. I know it was hard for him, this has been hard for several years. But the same spark that lit in me, lit in him that afternoon. He agreed to at least pursue more information.

I sent an e-mail to the Institute of Neurological Research, run by Dr. Tobinick (the pioneer of these treatments) asking for more information and a list of doctors who might live in the general vicinity of my parents. I then headed back home hoping for the best.

The next day, my father called. He had received a reply from the clinic, they were accepting new patients, and he had scheduled a phone consult. The consult cost $500 and would last approximately 30 minutes.

I did not get to listen to the entire call, but my father later reported that after their conversation about my mother's condition, she appears to be a good candidate for the treatment. They requested quite a bit of medical information about my mother (MRI, bloodwork, chest x-ray, summary of history by the neurologist, etc.). My father is in the process of working through information requests and doctors appointments to gather this information, which will be sent out to California. Assuming all is well with the medical information, they will be scheduling the first treatments at the INR in California around the end of January. They will stay about three to four weeks, through the initial evaluation and the first four injections.

Fortunately, there is a doctor about 2 hours from my parents' house who can continue the treatments if this works.

This is the first time I have been hopeful for my mother in three years. If this works like my research shows, I may have my mother back in a month. For now, I hope for the best and prepare for the worst. But I will use this blog to chronicle our journey, and hopefully keep everyone informed how she is progressing.