Well, one week from now, as I am writing this, the first Christmas without my wife in 38 years will be over. I will admit I am not looking forward to it (except for the grandkids). Christmas, heck holidays in general, was/were my wife's "thing". We shall see what happens.
I wanted to take this time to wish anyone affected by or afflicted with this disease a very Merry Christmas, Happy Holidays, and a very Happy New Year. To family members that are dealing with or caring for patients and in memory of those that have lost their battle with MSA as well. I have a saying that I have shared with people and try to live by - Have as good a day as you can have.
I am still getting a phenomenal number of hits to this site. Not a week has gone by that I have not gotten multiple emails from people with MSA or family members of patients that are desperately looking for some consolation, advice, or just someone to listen. I answer every one gladly. I remember how desperate I was with my wife. I told her and felt many times that the disease was "outrunning" us. As I have stated on other posts here, every time we would come up with a "solution" to an aspect of the disease, the progression of the the disease took us on to another one. To all of you reading this for the first time, or that have not read many posts here; please go to the posts entitled "Maybe this will help.." parts 1, 2, and 3. These posts are a synopsis of my wife's symptoms, their progression, and the "solutions" we came up with to deal with them.
I look forward to hearing from any and all of you. gumbypoole@aol.com
Showing posts with label MSA symptoms. Show all posts
Showing posts with label MSA symptoms. Show all posts
Sunday, December 18, 2011
Monday, November 7, 2011
They just keep coming!
Last month - October 2011 - logged the second highest number of visits to this blog in its existence. As I have stated before, I am constantly amazed at the number of hits this site still gets. I feel kind of bad since I hardly ever post here anymore, so here I am.
Hardly a week goes by without me getting an email or a comment from someone expressing their good wishes/blessings on me and my family or to thank me for writing the posts I did. That is extremely gratifying. As I said when I started this, this blog was for me - especially when it started. I will admit as I talked to and "met" other people with MSA I did get some inspiration to try to offer some posts that I thought might help those going through the hell that is a degenerative neurological disease.
I have noticed that the second most popular post here is my post about stem cell treatments. I understand this as one of the great agonies of MSA is the lack of treatment. I am doing more research now and will do an additional post when I feel I have anything new to add. For now I stick by the recommendation of the original post - stem cell treatment, especially since it involves extensive cost and travel, is not something I feel is worth it. It also could be very dangerous. The hospitals that are doing the procedure are not under any medical protocol approvals like we are used to here in the U.S. It is still very much an experimental procedure. I do not want to take away hope from anyone. I definitely know the burning desire to do SOMETHING to try to beat back this evil malady. I also recognize that I am only giving my opinion. However, it is an educated opinion. I have spend many hours researching the stem cell procedures that are out there now. I have even had two email "conversations" with Doctors in China that work in facilities that do the procedures. (both told me, "off the record" that they would not have the procedure done on themselves or a loved one with MSA - FYI) So, I will revisit this sometime in the next six months.
I am still upset by the lack of views the posts "Maybe this will help" parts 1-3 get. Those contain things I wish I had been told when my wife and I were going through the daily trials and challenges of MSA. I recommend you read these if you are a caregiver. I am not claiming to have all the answers. Heck, I don't even have all the questions. What I tried to do was tell you what we faced, and some of the ways we made it better. If the MSA advances for you like it did for us, knowing ahead of time can be a great help. A lot of our "fixes" we came up with only worked for us for a very short time due to the progression of the symptoms.
I wish everyone affected by MSA my best. Family members, patients, medical staff dealing with the symptoms, researchers working on finding out what exactly is going on with the disease and hopefully working on a cure are all in my thoughts. Best wishes and good luck to all of you. Please feel free to comment or write me - gumbypoole@aol.com
Hardly a week goes by without me getting an email or a comment from someone expressing their good wishes/blessings on me and my family or to thank me for writing the posts I did. That is extremely gratifying. As I said when I started this, this blog was for me - especially when it started. I will admit as I talked to and "met" other people with MSA I did get some inspiration to try to offer some posts that I thought might help those going through the hell that is a degenerative neurological disease.
I have noticed that the second most popular post here is my post about stem cell treatments. I understand this as one of the great agonies of MSA is the lack of treatment. I am doing more research now and will do an additional post when I feel I have anything new to add. For now I stick by the recommendation of the original post - stem cell treatment, especially since it involves extensive cost and travel, is not something I feel is worth it. It also could be very dangerous. The hospitals that are doing the procedure are not under any medical protocol approvals like we are used to here in the U.S. It is still very much an experimental procedure. I do not want to take away hope from anyone. I definitely know the burning desire to do SOMETHING to try to beat back this evil malady. I also recognize that I am only giving my opinion. However, it is an educated opinion. I have spend many hours researching the stem cell procedures that are out there now. I have even had two email "conversations" with Doctors in China that work in facilities that do the procedures. (both told me, "off the record" that they would not have the procedure done on themselves or a loved one with MSA - FYI) So, I will revisit this sometime in the next six months.
I am still upset by the lack of views the posts "Maybe this will help" parts 1-3 get. Those contain things I wish I had been told when my wife and I were going through the daily trials and challenges of MSA. I recommend you read these if you are a caregiver. I am not claiming to have all the answers. Heck, I don't even have all the questions. What I tried to do was tell you what we faced, and some of the ways we made it better. If the MSA advances for you like it did for us, knowing ahead of time can be a great help. A lot of our "fixes" we came up with only worked for us for a very short time due to the progression of the symptoms.
I wish everyone affected by MSA my best. Family members, patients, medical staff dealing with the symptoms, researchers working on finding out what exactly is going on with the disease and hopefully working on a cure are all in my thoughts. Best wishes and good luck to all of you. Please feel free to comment or write me - gumbypoole@aol.com
Monday, March 28, 2011
Maybe this will help - Part 2
A problem with the way these blogs work will mean the "end" of these posts will be first. But, it is what it is. Here is post #2 on my wife's symptoms and what if anything we were able to do to help.
The second symptom that manifested itself in the onset of my wife's disease path was Parkinson's-type tremors and rigidity as well as loss of fine motor skills. I put these all together for convenience of discussion. But maybe some background is in order.
MSA is a disease that was designated to cover what was three distinct diseases - Shy-Drager syndrome, striatonigral degeneration, and olivopontocerebellar atrophy.
In Shy-Drager syndrome, the most prominent symptoms are those involving the autonomic system, the body system that regulates blood pressure, urinary function, and other functions not involving conscious control. Olivopontocerebellar atrophy principally affects balance, coordination, and speech. These two are now usually classified as MSA-C subtype. (although some "experts" classify them separately)
Striatonigral degeneration causes parkinsonian symptoms such as slowed movements and rigidity, as well as the tremors that most people recognize as Parkinson's. This is known as MSA-P.
My wife has symptoms of both (or all three) types. At some point most MSA patients do show symptoms of both. The main distiquishing factor in the classification is the patients response (or lack thereof) to levadopa or other typical medicines used to treat Parkinson's. Luckily, my wife does respond to levadopa for her tremors and rigidity. This helps with those symptoms.
Loss of fine motor skills and tremors are particularly annoying to the patient (and caregiver?). This takes away most of the day to day skills that we all take for granted. Feeding ones self, brushing ones teeth, writing, using a keyboard, working the remote control, dialing a phone, and more. My wife is unable to do any of these currently and has not for a while.
To help with these Parkinson's type symptoms, parkinson-type tools and medicines may help. There are a world of utensils and devices for parkinson's patients. We found most of them too late (hence these posts). There is silverware with large weighted and/or padded handles. A patient with tremors can hold and use these when traditional silverware becomes unusable. There are divided and weighted plates to help in getting food on the silverware. There are plate guards to put on the edge of "real" plates to do the same. We used this when we would go out and my wife wanted to feed herself and not use a divided plate. For writing, the larger padded pens are the best. The larger, heavier, and padded items in all these cases are the best. You can "google" this and get many, many references to sites and companies that offer all of this and more. If you live in a larger populated area you should have a medical supply store that offers some or all. We found the online places to be more convenient and cheaper, but to each his own.
There are simple tips like always get a "to go" cup and straw, or bring your own travel cup/mug. We have a collection of them. We knocked over a few glassed before this one dawned on us. When food comes, it it requires cutting - go ahead and do it. Trying to reach over and cut a bite or two every so often is more disruptive (at least to us) than just taking the plate and doing what needs to be done at the beginning. There are "bibs" or aprons that can be put on, similar to a lobster bib that restaurants use for diners. If you do not want to look like the patient is wearing a bib, at least tuck the napkin into the collar. We ruined a few shirts/blouses before we started using one of these at most meals.
One last thing. Do go out. Do try to live as normal a life (see previous posts, there is no normal!) as possible. One aspect of this damned disease is - it will all become very, very difficult if not impossible at some point. Do what you can when you can. To the caregivers - if cutting food, giving drinks, and feeding your patient offends you - get a helper. We went through a period where we did not want to go anywhere because it was hard, or my wife would be embarrassed at being fed, or whatever. You deserve to live - so live!
More to come. Comments, questions, and suggestions are welcomed.
The second symptom that manifested itself in the onset of my wife's disease path was Parkinson's-type tremors and rigidity as well as loss of fine motor skills. I put these all together for convenience of discussion. But maybe some background is in order.
MSA is a disease that was designated to cover what was three distinct diseases - Shy-Drager syndrome, striatonigral degeneration, and olivopontocerebellar atrophy.
In Shy-Drager syndrome, the most prominent symptoms are those involving the autonomic system, the body system that regulates blood pressure, urinary function, and other functions not involving conscious control. Olivopontocerebellar atrophy principally affects balance, coordination, and speech. These two are now usually classified as MSA-C subtype. (although some "experts" classify them separately)
Striatonigral degeneration causes parkinsonian symptoms such as slowed movements and rigidity, as well as the tremors that most people recognize as Parkinson's. This is known as MSA-P.
My wife has symptoms of both (or all three) types. At some point most MSA patients do show symptoms of both. The main distiquishing factor in the classification is the patients response (or lack thereof) to levadopa or other typical medicines used to treat Parkinson's. Luckily, my wife does respond to levadopa for her tremors and rigidity. This helps with those symptoms.
Loss of fine motor skills and tremors are particularly annoying to the patient (and caregiver?). This takes away most of the day to day skills that we all take for granted. Feeding ones self, brushing ones teeth, writing, using a keyboard, working the remote control, dialing a phone, and more. My wife is unable to do any of these currently and has not for a while.
To help with these Parkinson's type symptoms, parkinson-type tools and medicines may help. There are a world of utensils and devices for parkinson's patients. We found most of them too late (hence these posts). There is silverware with large weighted and/or padded handles. A patient with tremors can hold and use these when traditional silverware becomes unusable. There are divided and weighted plates to help in getting food on the silverware. There are plate guards to put on the edge of "real" plates to do the same. We used this when we would go out and my wife wanted to feed herself and not use a divided plate. For writing, the larger padded pens are the best. The larger, heavier, and padded items in all these cases are the best. You can "google" this and get many, many references to sites and companies that offer all of this and more. If you live in a larger populated area you should have a medical supply store that offers some or all. We found the online places to be more convenient and cheaper, but to each his own.
There are simple tips like always get a "to go" cup and straw, or bring your own travel cup/mug. We have a collection of them. We knocked over a few glassed before this one dawned on us. When food comes, it it requires cutting - go ahead and do it. Trying to reach over and cut a bite or two every so often is more disruptive (at least to us) than just taking the plate and doing what needs to be done at the beginning. There are "bibs" or aprons that can be put on, similar to a lobster bib that restaurants use for diners. If you do not want to look like the patient is wearing a bib, at least tuck the napkin into the collar. We ruined a few shirts/blouses before we started using one of these at most meals.
One last thing. Do go out. Do try to live as normal a life (see previous posts, there is no normal!) as possible. One aspect of this damned disease is - it will all become very, very difficult if not impossible at some point. Do what you can when you can. To the caregivers - if cutting food, giving drinks, and feeding your patient offends you - get a helper. We went through a period where we did not want to go anywhere because it was hard, or my wife would be embarrassed at being fed, or whatever. You deserve to live - so live!
More to come. Comments, questions, and suggestions are welcomed.
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