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.
Wednesday, February 25, 2009
Tuesday, February 17, 2009
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!
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!
Friday, February 13, 2009
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
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
Thursday, February 12, 2009
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
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
Wednesday, February 11, 2009
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
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
Saturday, February 7, 2009
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.
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.
Thursday, February 5, 2009
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
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
Wednesday, February 4, 2009
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!
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
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
Monday, February 2, 2009
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.
Sunday, February 1, 2009
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.
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