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.
Saturday, January 31, 2009
Friday, January 30, 2009
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.
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.
Thursday, January 29, 2009
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
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
Wednesday, January 28, 2009
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.
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.
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)
(written by Pal)
Tuesday, January 27, 2009
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.
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
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
Monday, January 26, 2009
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
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 :)
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 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.
Saturday, January 24, 2009
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.
Friday, January 23, 2009
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.
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.
Monday, January 19, 2009
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!)
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!)
Friday, January 16, 2009
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.
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.
Monday, January 12, 2009
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
http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/4081064272/p/33
Saturday, January 10, 2009
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.
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 . . .
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 . . .
Thursday, January 8, 2009
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
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
Wednesday, January 7, 2009
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.
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.
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