A Merry Sad Christmas.
Yesterday was Christmas. Three of our children and two spouses were here. Our son J and his brother K and sister in-law C came late Christmas Eve, after attending their church's Christmas Eve service. Daughter K and husband K, because they live close, came Christmas morning. Our oldest son and family, who live the furthest away, came the Saturday before Christmas so we celebrated an early Christmas with them.
It was a great Christmas. After our traditional breakfast of pan style oven baked French toast and my niece's Apple Bread Pudding, the guys moved my recliner and all required medical equipment from the smaller den into the much larger great room. While this move was a lot of work, it allowed me to enjoy opening presents and made it possible for everyone to be in the same room while opening Christmas presents. After eating breakfast and getting dressed, but before opening presents, I ended up taking a nap from the exertion. However, I made it through the rest of the day without any more naps. I think we all had a Merry Christmas, P was pleased with her new camera and spent some time getting used to it. Everyone else settled down to read books, put together gifts that needed assembling, or went into the den to play with the WII game daughter K received for Christmas and brought along so others could enjoy it. I connected my computer speakers so we could all listen to Christmas music and so I could communicate with everyone using Cepstral's "SwiftTalker" a text to speech program I have started using.
I think it was that nap, the fact that I had to ask P to help me get ready for bed at 5:30, being in bed for supper and taking a short nap immediately after supper and falling asleep at 8:30 that caused me to review my Blog. Reviewing my Blog told me something I already knew but think I was ignoring and that is that I am much weaker or sicker now then I was at the beginning of the year. In fact reading my Blog I was amazed at how closed in my world has become. I think one can see that by the decreased number of Blog entries I written this past year. I believe the number of Blog entries have decreased because my life has entered a rather set routine because I no longer have the energy to go and do. So I spend my days sitting in the den on my computer using Instant Messaging to talk to family, working Sudoku puzzles, making and solving Jigsaw puzzles, playing Cribbage and either listening to a Southern Gospel Quartet Music web radio station or watching movies I receive through the mail from Netflix. In fact P’s present to me this year was to increase the number of DVD’s we can have checked out from Netflix at a time from one to two. One reason for this change is so P doesn’t have to spend a lot of time searching for movies I am interested at the local library. However, the main reason was to give me the freedom to retain the ability to do something for myself without having to ask someone else to do it, go to the library, for me. Even though there is a slight increase in the monthly Netflix cost, I like being able to find a movie, order it, receive it in the mail, watch it, and return it without bothering, asking, and/or reminding P of yet one more thing she could/should do for me.
I think the above is the happy part of this posting. The sad part is that the neuromuscular disease has progressed much faster and more then I had hoped. I now find that even when I do relative easy things, like doing what most people consider a normal morning routine causes me to become exhausted to the point of needing to take a short nap. As a result I find myself avoiding doing most things, or planning my activities so that I use the least amount of energy. For example on the days that P works, I fill two bottles with water and bring them into the den while waiting for my morning coffee to finish brewing. Also on those days, I will help P prepare my lunch by cutting up a piece of fruit, making a salad while making my breakfast. P will place these items along with a thermos of soup by my chair in the den so I will not have to get up in the middle of the day. I also have a couple of containers so in the middle of the day I empty my Foley collection bag. Because I find talking to be one of the hardest and most tiring things I do, often after someone stops by to visit, my chest muscles are so tired I can't initiate a breath, I have begun using "SwiftTalker" a program that allows me to type sentences, questions or responses and then the program converts the text to speech using my computer speakers.
I have talked to my neurologist about this exhaustion and she tells me that it is caused by the progression of the disease. She tells me that the exhaustion is caused in part by the deterioration of the nerves and in part by the weakening of my muscles. She tells me that because of this deterioration and weakening, I am expending far more energy doing simple tasks then I realize. Because this disease is progressing and because she is doing everything currently approved by the government for treating this type of disease, at my last neurologist visit the doctor asked, if she could find something, would I be interested in taking part in either a medical or drug experimental trial/study that might help to either reverse or slow the progression of this disease and possibly increase muscle strength. In the past, I have talked to my internal medicine doctor about the progression of the disease and he has told me the same things that my neurologist told me. So I told my neurologist that if she finds either a medical or drug experimental trial/study that I would be interested in exploring taking part in one.
Often when I write either a Blog posting or an email similar to this post, at the end I always try to turn to the positive. However, I am not going to do that this time.
It was a great Christmas. After our traditional breakfast of pan style oven baked French toast and my niece's Apple Bread Pudding, the guys moved my recliner and all required medical equipment from the smaller den into the much larger great room. While this move was a lot of work, it allowed me to enjoy opening presents and made it possible for everyone to be in the same room while opening Christmas presents. After eating breakfast and getting dressed, but before opening presents, I ended up taking a nap from the exertion. However, I made it through the rest of the day without any more naps. I think we all had a Merry Christmas, P was pleased with her new camera and spent some time getting used to it. Everyone else settled down to read books, put together gifts that needed assembling, or went into the den to play with the WII game daughter K received for Christmas and brought along so others could enjoy it. I connected my computer speakers so we could all listen to Christmas music and so I could communicate with everyone using Cepstral's "SwiftTalker" a text to speech program I have started using.
I think it was that nap, the fact that I had to ask P to help me get ready for bed at 5:30, being in bed for supper and taking a short nap immediately after supper and falling asleep at 8:30 that caused me to review my Blog. Reviewing my Blog told me something I already knew but think I was ignoring and that is that I am much weaker or sicker now then I was at the beginning of the year. In fact reading my Blog I was amazed at how closed in my world has become. I think one can see that by the decreased number of Blog entries I written this past year. I believe the number of Blog entries have decreased because my life has entered a rather set routine because I no longer have the energy to go and do. So I spend my days sitting in the den on my computer using Instant Messaging to talk to family, working Sudoku puzzles, making and solving Jigsaw puzzles, playing Cribbage and either listening to a Southern Gospel Quartet Music web radio station or watching movies I receive through the mail from Netflix. In fact P’s present to me this year was to increase the number of DVD’s we can have checked out from Netflix at a time from one to two. One reason for this change is so P doesn’t have to spend a lot of time searching for movies I am interested at the local library. However, the main reason was to give me the freedom to retain the ability to do something for myself without having to ask someone else to do it, go to the library, for me. Even though there is a slight increase in the monthly Netflix cost, I like being able to find a movie, order it, receive it in the mail, watch it, and return it without bothering, asking, and/or reminding P of yet one more thing she could/should do for me.
I think the above is the happy part of this posting. The sad part is that the neuromuscular disease has progressed much faster and more then I had hoped. I now find that even when I do relative easy things, like doing what most people consider a normal morning routine causes me to become exhausted to the point of needing to take a short nap. As a result I find myself avoiding doing most things, or planning my activities so that I use the least amount of energy. For example on the days that P works, I fill two bottles with water and bring them into the den while waiting for my morning coffee to finish brewing. Also on those days, I will help P prepare my lunch by cutting up a piece of fruit, making a salad while making my breakfast. P will place these items along with a thermos of soup by my chair in the den so I will not have to get up in the middle of the day. I also have a couple of containers so in the middle of the day I empty my Foley collection bag. Because I find talking to be one of the hardest and most tiring things I do, often after someone stops by to visit, my chest muscles are so tired I can't initiate a breath, I have begun using "SwiftTalker" a program that allows me to type sentences, questions or responses and then the program converts the text to speech using my computer speakers.
I have talked to my neurologist about this exhaustion and she tells me that it is caused by the progression of the disease. She tells me that the exhaustion is caused in part by the deterioration of the nerves and in part by the weakening of my muscles. She tells me that because of this deterioration and weakening, I am expending far more energy doing simple tasks then I realize. Because this disease is progressing and because she is doing everything currently approved by the government for treating this type of disease, at my last neurologist visit the doctor asked, if she could find something, would I be interested in taking part in either a medical or drug experimental trial/study that might help to either reverse or slow the progression of this disease and possibly increase muscle strength. In the past, I have talked to my internal medicine doctor about the progression of the disease and he has told me the same things that my neurologist told me. So I told my neurologist that if she finds either a medical or drug experimental trial/study that I would be interested in exploring taking part in one.
Often when I write either a Blog posting or an email similar to this post, at the end I always try to turn to the positive. However, I am not going to do that this time.
posted by UP at 7:43 AM
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