OK, I shamed myself into writing a post. As I have said now time after time, I am amazed at the people that are still reading this. I feel proud and pleased that the posts that are getting read, for the most part, are those dealing with trying to help others deal with MSA and other alphabet diseases. The most popular post over the past year has been my first about stem cell. I understand the allure, I understand the interest. One of the reasons I wrote the post anyway was after an exhaustive research on my part in looking for something to help my wife. I decided after this research that it was a waste of time and money. I still feel this way. I have had some that have written me saying I am taking away hope. I am maybe guilty of taking away what I (and most experts) feel is false hope. Unless you are in a financial position that $30,000 to $40,000 is not an issue to lose, there appears to be no good reason to try what is a risky, and unproven procedure at this point. My opinion is it will remain this way for a long time, if not indefinitely. If you have not read the post, in a nutshell (besides being expensive, dangerous, and unproven) to replace cells that are dying without finding, stopping and preventing the reasons for the cell death, at best you are only prolonging the inevitable. There have been some patients that have had the procedure (in China mostly) that have experienced a "remission" of sorts or even an improvement in symptoms for a while after the procedure. I feel this is due to the placebo effect. Now, I realize if you are better, who cares why or how? There are also patients that have died during or immediately after the procedure. I will stand by my comments.
One other issue I will bring up here is one that has been on my mind of late. That is the issue of "awareness". It seems that all my brethren in the MSA family are hell-bent on awareness. I will admit I do not understand the call. If we were among the first groups afflicted with the disease (I was a caregiver to my wife, who died from complications of MSA), I would understand more. There is plenty of awareness among the medical field where it matters; researchers. However, being realistic, with such a small population being affected one cannot expect a full-out assault like the one on polio or smallpox generations ago. I am not trying to be heartless, I am not trying to be a defeatist. I am a realist. Doctors know of Shy-Drager, if not MSA. Doctors are taught OPCA, and other names for the same or similar diseases. The problem is, unless in a large area or a teaching hospital, they may not see an actual patient in their career. When my wife and I went to UNC Neurological Hospital to see a doctor that specializes in MSA (movement disorders is typically where these doctors are categorized), we found he had three other active patients and had treated less than 20 in his career. His department head said that those numbers were typical of the four doctors they had seeing MSA patients. We found this to hold true at Duke University Medical Center, Medical University of South Carolina, and every other hospital we went to.
One of the complaints I hear that I think are driving the awareness calls are concerning how long it takes for a diagnosis. One has to understand, doctors do not want to give this (or similar) diagnoses. Remember there is no cure or treatment. There are no medicines or drugs to "cure" anything. Yes, there are drugs that can help with the symptoms. Most of these are started when those symptoms are noted anyway, regardless of the diagnosis, or lack of. I know from first-hand (or second-hand if you are looking realistically on me as a caregiver, not a patient) experience how frustrating is can be to go from doctor to doctor, test after test, and visit after visit to try to get a handle on what is going on. But, I also remember the devastation when we got the official diagnosis. (I say official because I and to some degree my wife, had already come to that conclusion from our own research) Doctors want to make sure they rule out any other disease which can have similar symptoms, some of which DO have treatments if not cures. Believe me, as hard as the waiting is one does not want to hear the diagnosis of MSA.
On research: there are many fine, wonderful, dedicated, and devoted researchers that are working on finding a cause, treatment, and ultimately a potential cure for MSA and other alphabet diseases of the brain. I feel the greatest results will come from all the research into the brain and its diseases in general. The brain is one of the least understood organs in the human body. To put it in perspective, it essentially cannot do all it does. We can build computers now that can do computations as complex and intricate as the brain. However, we have never come close to building a machine that can do that and all the simultaneous things the brain does AND have self-awareness. The brain is a wondrous, fantastic, intricately homogenized machine that is a problem waiting to happen. The complex, amazing "dance" performed by this organ can be wrecked if just a few "wires are crossed". When dealing with the myriad of brain diseases like MSA, PSP, DLB, HD, PD, ALS, and others, the research is being done at a "grand level". There is still so much we do not know about the brain that a finding from a researcher studying Huntington's Disease may be a breakthrough for MSA or others. It seems to me that as much as we need to support research into MSA specifically, research into any degenerative brain disease benefits the cause.
I wish all reading this well. I hope you are just doing research out of curiosity not because you or you loved one are suffering with MSA. I will remind you that that are pages here that I did covering my wife's symptoms and what steps we took and/or what devices we used to help. They are under the title "Maybe this will help..." There are three pages. They are not truly chronological, as I wrote them as I thought of them. Plus, I can tell you from talking to other MSA patients, although most get the same symptoms they do not come at the same time or in the same order.
Showing posts with label disease. Show all posts
Showing posts with label disease. Show all posts
Sunday, April 7, 2013
Thursday, January 27, 2011
To eat or not to eat, that is the question.
I have done blogs on my other "all purpose blog" (http://www.justsomeposts.blogspot.com/) about how we Americans are obessed with food and eating. Imagine yourself being told you cannot eat any more solids, nor can you drink any more liquids. That is where we are now.
We have a new addition to our list of ailments - Dysphagia - aka inability to swallow (or problems swallowing). Since about the first of December, my wife has been dealing with more and more problems related to eating and swallowing. She was (and is) having a lot of problems with both liquids and solids. (for those of you following this damned disease, or caring for someone afflicted - dysphagia is a very common and expected symptom - be forewarned) She has problems doing with her lips, mouth, tongue, and throat what we all take for granted pretty much from the first minutes of life. Using a straw has become a challenge, as she cannot get the muscles of her mouth to do what needs to be done to get it to "suction" the liquid. Drinking liquids directly from a cup is a problem because of lack of control of the liquid and the chance of choking. (another note for those following along - pneumonia is the greatest threat with this disease and is the leading cause of death) Aspiration of the liquid, especially anything other than water, is very dangerous due to the inability to cough. My wife has a pretty good reflex cough, but almost no ability to cough "on cue". Actually, liquids can be harder to swallow than solids because of the amount of "control" required to keep from choking. This was something I had to learn, as it was counter-intuitive to me. Most of us take drinking a liquid to be a given and very easy to do versus eating solid food.
Today we went to the hospital for a modified barium swallow test. My wife had one done almost a year ago and was told other than a bit of slowness with her swallowing, all was well. Today was an entirely different story. She did the test, which involves swallowing (and chewing where necessary) various thicknesses of liquids and semi-solids infused with radioactive barium while having an X-ray taken of the mouth and throat. When we got the results, we were both taken a bit aback. The lady that administered the test, and gave us the results, calmly told us that she recommended that my wife avoid eating solid foods or drinking liquids of normal consistency. She said we should get her nutrition and fluid from semi-liquids of honey consistency (which I have since learned through the internet is an "official" consistency of Dysphagia products). We were further instructed to get her medications converted to liquid form and then give them in a product like applesauce or any "honey-like" liquid. I have also learned that there are a LOT of dysphagia products out there. Meal replacements, thickeners, etc in a myriad of flavors and consistencies. Thank goodness for that.
So, my wife, an American through and through was faced with a life of thickened fluids as food. No more Chinese food, no more fast food, no more fried chicken, etc. Purees and thickened fluids were prescribed. I am not sure of her immediate reaction, but I know mine was one of shock. We have both known this day would come, but it was still a blow. The trip home was solemn and sad. Food is such a part of who we are it was almost like the amputation or removal of a body part. We mourned a bit, and will continue to do so; but this is another loss among many that this disease has caused. So, we did what Americans do - she ate KFC fried chicken, slaw, mashed potatoes & gravy, and a fried apple pie for dinner. We will face the rest later.
We have a new addition to our list of ailments - Dysphagia - aka inability to swallow (or problems swallowing). Since about the first of December, my wife has been dealing with more and more problems related to eating and swallowing. She was (and is) having a lot of problems with both liquids and solids. (for those of you following this damned disease, or caring for someone afflicted - dysphagia is a very common and expected symptom - be forewarned) She has problems doing with her lips, mouth, tongue, and throat what we all take for granted pretty much from the first minutes of life. Using a straw has become a challenge, as she cannot get the muscles of her mouth to do what needs to be done to get it to "suction" the liquid. Drinking liquids directly from a cup is a problem because of lack of control of the liquid and the chance of choking. (another note for those following along - pneumonia is the greatest threat with this disease and is the leading cause of death) Aspiration of the liquid, especially anything other than water, is very dangerous due to the inability to cough. My wife has a pretty good reflex cough, but almost no ability to cough "on cue". Actually, liquids can be harder to swallow than solids because of the amount of "control" required to keep from choking. This was something I had to learn, as it was counter-intuitive to me. Most of us take drinking a liquid to be a given and very easy to do versus eating solid food.
Today we went to the hospital for a modified barium swallow test. My wife had one done almost a year ago and was told other than a bit of slowness with her swallowing, all was well. Today was an entirely different story. She did the test, which involves swallowing (and chewing where necessary) various thicknesses of liquids and semi-solids infused with radioactive barium while having an X-ray taken of the mouth and throat. When we got the results, we were both taken a bit aback. The lady that administered the test, and gave us the results, calmly told us that she recommended that my wife avoid eating solid foods or drinking liquids of normal consistency. She said we should get her nutrition and fluid from semi-liquids of honey consistency (which I have since learned through the internet is an "official" consistency of Dysphagia products). We were further instructed to get her medications converted to liquid form and then give them in a product like applesauce or any "honey-like" liquid. I have also learned that there are a LOT of dysphagia products out there. Meal replacements, thickeners, etc in a myriad of flavors and consistencies. Thank goodness for that.
So, my wife, an American through and through was faced with a life of thickened fluids as food. No more Chinese food, no more fast food, no more fried chicken, etc. Purees and thickened fluids were prescribed. I am not sure of her immediate reaction, but I know mine was one of shock. We have both known this day would come, but it was still a blow. The trip home was solemn and sad. Food is such a part of who we are it was almost like the amputation or removal of a body part. We mourned a bit, and will continue to do so; but this is another loss among many that this disease has caused. So, we did what Americans do - she ate KFC fried chicken, slaw, mashed potatoes & gravy, and a fried apple pie for dinner. We will face the rest later.
Monday, February 15, 2010
And then we wept... - originally posted 3-17-09
I am not really sure what this post is to accomplish. It is a bit of a catharsis for me. I hope it will be informational for some, possibly even inspirational for others that may be going through a similar event in their life (although I profoundly hope there would be no others going through what we are - I know there are)
Sunday as we were getting ready to leave Florida for home, my wife started weeping rather uncontrollably. Being the tough macho guy that I am, I kept a stiff upper lip - for about 30 seconds. I HATE seeing my wife cry (or any other loved one), especially a sad, wailing, cry. I asked her what was wrong, but it was one of the teary events where you cannot even talk. She was brushing her teeth at the time, and between the toothpaste, toothbrush, and weeping - communication was not possible. So, I just was just there. Then I teared up myself. Watching her, a grown woman, RN, mother of six, and grandmother of two (with another on the way) not being able to really brush her teeth (we have an electric brush for home, but travel with a normal one) struck me as one of the saddest things I have ever seen. Her coordination to really do the "brushing" motion is just not there any more. So, we wept together. She for, at the time, an unknown reason; me, for what she was going through and what we have to face going forward.
As we got in the car later, she broke down again saying goodbye to her mother. I had a hard time with this one as well as I knew she was unfathomably sad. Goodbyes are always hard. As we got on the road, we composed ourselves a bit. Then we talked. Now, I don't know how many of you have or have had a loved one on death row. (actually not a great comparison as there is always a chance of the governor calling - pretty sure this is above the governor's pay grade) Talk about an elephant in the room! We have talked in small circles around it, but never really in depth or details. This was pretty much the same except she started it with a tearful look and a question that ripped at my heart. She asked me through sobs "Will this be the last time I see my mother's house? Will I die before we get back?" By now, she was crying uncontrollably and I was having trouble seeing the road. I had no witty response. I had no great comeback. I just told her - "We will make a point to.".
I don't remember exactly what was said next, or how we got there; but I told her I was very, very sorry she was sick. I told her I would give almost anything if she was not. We were now weeping again (being a tough, macho type - maybe I was just tearing up a bit - weeping sounds a bit wimpy). She told me she was sorry I had to deal with her. I told her I was where I should be. If I did not want to be where I was, I would leave. I reminded her I was in for the duration.
We rode in silence for a while. I am not sure about her, but I still found my eyes getting wet from time to time. There was once about two hours later where she had dozed off. I looked over at this woman that I married over 35 years ago. She was shaking with her Parkinson's tremors with her hands curled on her lap. She looked so helpless....and sick, I guess. I remembered how just three years ago we were saying goodbye as she headed for work. Her loss of her physical self has been amazingly rapid. I found myself reaching for a napkin to dry my eyes. Luckily, she has not lost any of her mental self. She is still crazy, funny, and enjoys a laugh. We just have to work harder to find things to laugh about.
We made it through the rest of the ride with the elephant safely in the back seat. No more discussions, no more tears. We even laughed a bit from time to time.
Sunday as we were getting ready to leave Florida for home, my wife started weeping rather uncontrollably. Being the tough macho guy that I am, I kept a stiff upper lip - for about 30 seconds. I HATE seeing my wife cry (or any other loved one), especially a sad, wailing, cry. I asked her what was wrong, but it was one of the teary events where you cannot even talk. She was brushing her teeth at the time, and between the toothpaste, toothbrush, and weeping - communication was not possible. So, I just was just there. Then I teared up myself. Watching her, a grown woman, RN, mother of six, and grandmother of two (with another on the way) not being able to really brush her teeth (we have an electric brush for home, but travel with a normal one) struck me as one of the saddest things I have ever seen. Her coordination to really do the "brushing" motion is just not there any more. So, we wept together. She for, at the time, an unknown reason; me, for what she was going through and what we have to face going forward.
As we got in the car later, she broke down again saying goodbye to her mother. I had a hard time with this one as well as I knew she was unfathomably sad. Goodbyes are always hard. As we got on the road, we composed ourselves a bit. Then we talked. Now, I don't know how many of you have or have had a loved one on death row. (actually not a great comparison as there is always a chance of the governor calling - pretty sure this is above the governor's pay grade) Talk about an elephant in the room! We have talked in small circles around it, but never really in depth or details. This was pretty much the same except she started it with a tearful look and a question that ripped at my heart. She asked me through sobs "Will this be the last time I see my mother's house? Will I die before we get back?" By now, she was crying uncontrollably and I was having trouble seeing the road. I had no witty response. I had no great comeback. I just told her - "We will make a point to.".
I don't remember exactly what was said next, or how we got there; but I told her I was very, very sorry she was sick. I told her I would give almost anything if she was not. We were now weeping again (being a tough, macho type - maybe I was just tearing up a bit - weeping sounds a bit wimpy). She told me she was sorry I had to deal with her. I told her I was where I should be. If I did not want to be where I was, I would leave. I reminded her I was in for the duration.
We rode in silence for a while. I am not sure about her, but I still found my eyes getting wet from time to time. There was once about two hours later where she had dozed off. I looked over at this woman that I married over 35 years ago. She was shaking with her Parkinson's tremors with her hands curled on her lap. She looked so helpless....and sick, I guess. I remembered how just three years ago we were saying goodbye as she headed for work. Her loss of her physical self has been amazingly rapid. I found myself reaching for a napkin to dry my eyes. Luckily, she has not lost any of her mental self. She is still crazy, funny, and enjoys a laugh. We just have to work harder to find things to laugh about.
We made it through the rest of the ride with the elephant safely in the back seat. No more discussions, no more tears. We even laughed a bit from time to time.
Saturday, February 13, 2010
DRIVE - originally posted 1/18/2009
Imagine you are out for a drive. You are motoring along. Occasionally you stop to get a bite to eat or to enjoy some of the sites. But mostly you are cruising and taking in the ride.
Suddenly you realize your vehicle is going on it's own. Not too fast, not too slow, but ever moving whether you want it to or not. You realize you are not really even steering the car or choosing the exact direction you are travelling any longer. You run red lights and stop signs. You pass in no passing zones and are passed in others. But, you continue relentlessly forward. There is no reverse.
You would love to just STOP, to pull in somewhere and sit and take in the local flavor. You know, however, the only stopping you will be doing is by crashing or just running out of gas somewhere you don't want to be.
But, maybe moving towards SOMETHING is better than stopping at NOTHING.
Welcome to our life.
Suddenly you realize your vehicle is going on it's own. Not too fast, not too slow, but ever moving whether you want it to or not. You realize you are not really even steering the car or choosing the exact direction you are travelling any longer. You run red lights and stop signs. You pass in no passing zones and are passed in others. But, you continue relentlessly forward. There is no reverse.
You would love to just STOP, to pull in somewhere and sit and take in the local flavor. You know, however, the only stopping you will be doing is by crashing or just running out of gas somewhere you don't want to be.
But, maybe moving towards SOMETHING is better than stopping at NOTHING.
Welcome to our life.
Friday, February 5, 2010
A serious one - originally posted April 6,2008
If you have not read the first post in this blog - please do so. All this is based around the first post.
I wanted to do a blog on perspective. Life and our evaluation of it is based a LOT on perspective. I got a great example of this yesterday.
My wife is disabled!! Officially. Perspective - - -
On face value, that would not appear to be a good thing. Disability is not to be cheered. Ah, official disability is (or can be). My seventeen year old was here yesterday when my wife opened the letter and we were cheering for disability. She made a comment that is was weird that we were happy with Mom being disabled. I explained we weren't, but...
My wife's condition is affected not one bit by what the doctors, bureaucrats, or anyone else labels it. She is no more nor no less disabled or ill than prior to getting the letter. However, getting the letter signifies official legal acceptance of her disability. That will hopefully lead to a lessening of the financial burdens of her condition and let us deal exclusively with the physical ones.
I think I mentioned before how during the diagnosis stage, my wife and I found ourselves cheering and wishing for a diagnosis of MS or Parkinson's. Not to say both of those diseases are not horrific and life changing in their own right, but... Perspective - - -
The other diagnosis we were faced with was of a magnitude worse -MSA. I wrote a blog a while back about the alphabet diseases. The addition of an "A" to "M" and "S" takes a horrible disease and makes it imminently more horrible.
In our discussions about disease and disability my wife commented on her possibility of having MS and/or Parkinson's. I said "I know I was pulling for you to have one of them as well." That caused another comment from my daughter about how we were weird. I had to explain to her it is all about perspective.
Let's have a round of applause for my wife's official disability. From anyone else's perspective that may sound strange. From here it is receiving a standing ovation.
I wanted to do a blog on perspective. Life and our evaluation of it is based a LOT on perspective. I got a great example of this yesterday.
My wife is disabled!! Officially. Perspective - - -
On face value, that would not appear to be a good thing. Disability is not to be cheered. Ah, official disability is (or can be). My seventeen year old was here yesterday when my wife opened the letter and we were cheering for disability. She made a comment that is was weird that we were happy with Mom being disabled. I explained we weren't, but...
My wife's condition is affected not one bit by what the doctors, bureaucrats, or anyone else labels it. She is no more nor no less disabled or ill than prior to getting the letter. However, getting the letter signifies official legal acceptance of her disability. That will hopefully lead to a lessening of the financial burdens of her condition and let us deal exclusively with the physical ones.
I think I mentioned before how during the diagnosis stage, my wife and I found ourselves cheering and wishing for a diagnosis of MS or Parkinson's. Not to say both of those diseases are not horrific and life changing in their own right, but... Perspective - - -
The other diagnosis we were faced with was of a magnitude worse -MSA. I wrote a blog a while back about the alphabet diseases. The addition of an "A" to "M" and "S" takes a horrible disease and makes it imminently more horrible.
In our discussions about disease and disability my wife commented on her possibility of having MS and/or Parkinson's. I said "I know I was pulling for you to have one of them as well." That caused another comment from my daughter about how we were weird. I had to explain to her it is all about perspective.
Let's have a round of applause for my wife's official disability. From anyone else's perspective that may sound strange. From here it is receiving a standing ovation.
Wednesday, February 3, 2010
A new forum - the timeline and setup
I thought I would do this post to keep my other blog http://www.justsomeposts.blogspot.com/ "clean" with my ridiculous thoughts and political/social commentary. This blog will be my thoughts and comments on my and my wife's journey with her disease - multiple system atrophy. If you are not familiar with this disease, don't feel bad. We still have to explain it to doctors, nurses and medical staff most places we go. Google it, you will find good information out there. Here is the official definition from the National Institutes of Health:
Multiple System Atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failurs such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of motor coordination. MSA affects both men and women primarily in their 50s.
There is no cure for MSA. Currently, there are no treatments to delay the progress of neurodegeneration in the brain. But there are treatments to help people cope with some of the more disabling symptoms of MSA.
The disease tends to advance rapidly over the course of 9 to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure.
Why "Living with a Snow(wo)man" you may ask? I liken this disease to a "melting" of the individual. Trying to hang on to the loved one you knew is akin to trying to keep a snowman (or snowwoman in our case) whole. The disease is insidious. Watching the progress is like watching a snowman melt. Hence the title.
This blog will be mostly for me. I will try to not be too morbid or self-serving, but hey - MY BLOG! If you want to follow along, you are welcomed. If there are things you like or dislike, tell me. If you think I should not be doing it, or hate it; don't read it. Again - MY BLOG. One thing I am NOT looking for is pity or empathy for me. Although this disease is a trial for me and affects every aspect of my life (whether as the elephant in the room, or just the day to day scheduling), the burden on me is nothing compared to the burden on my wife. If you need to offer pity, empathy, sorrow, prayers, or tears; offer them to her. She is facing the disease with a character, bravery, and dignity that I probably could not muster on a bet.
After this opening, the first posts will be "reprints" of the posts I have done on my other blog. Some of them may not be "clean" posts just about the disease. The new posts will be that, but I want a chronicle of where we've been. First a timeline and an update of where we are today.
Sept 2005 - my wife called me at work and told me she had felt ill trying to get in the door of our house. She said she could not get the key to work and felt disoriented and dizzy. I thought she had had a "mini-stroke"(TIA) and told her to take an aspirin, a vitamin E, and to sit down and wait for me. I went home and took her to the ER. After hours of testing, they determined that she may indeed have had an transient ischemic event. We were told to go home and rest. More testing followed. We are not sure what if any relationship this event had in her present state, but we always start our timeline here when we talk to doctors (and there have been a LOT of those!).
My wife for years and years had told me she would get "dizzy" when walking from a parking lot in the daytime into a store or mall. We thought nothing of it, but mentioned it to the doctor when she had her suspected TIA. During the months following her TIA she would get dizzy and light-headed upon standing, especially after sitting a long time. Going from an air conditioned space (a car particularly) to a hot parking lot was especially bad. She then started experiencing syncope (fainting) upon standing or exertion. She started going to doctors. This is all in the early months of 2006. She was still working full time as a registered nurse, driving, cooking, and otherwise leading a fairly normal life. She just passed out from time to time. She went to cardiologists, endocrinologists, and neurologists; as well as her family doctor. After tests and tests and tests, where she was pronounced a "very healthy woman except that you have this syncope going on", we found a doctor that gave her a diagnosis of MSA in early 2007. However I left out the progression of symptoms.
During 2006 her fainting spells progressively got worse. She could tell they were coming on most of the time, but could not do anything to prevent them. She passed out in the parking lot walking into work a few times. They never told her directly, but we heard she was suspected of being an alcoholic or drug addict by many. She suffered from a loss of coordination as well as some vision problems. By June of 2006 she was out of work. She was told that she was too much of a liability. That was a big milestone for her. Losing one's profession is to lose one's self in our society, to a point. She was using a cane to help with her balance by mid to late 2006. I was accompanying her to the doctors now, as her driving was not as good; and our concern that something serious was going on had definitely set in. We went to many, many doctors; none who could offer any answers.
At UNC Hospitals in February of 2007 (my wife says January, but I am writing this and I remember February) Dr. Georgia Lea gave us the official diagnosis of MSA. I had reached that conclusion from studies on the internet and we had discussed it some in general; but unless you have had it happen to you, you cannot imagine getting a diagnosis like that. A death sentence - no cure, no treatment, no hope. That was a rough day. She made phone calls and we met with our kids and told them. A lot of tears were shed that day.
Back to my wife's symptoms. She had developed Parkinson's like tremors during the latter months of 2006 and into 2007. MSA is considered one of the class of diseases sometimes called "Parkinson's Plus" (it's the "plus" that gets you) and this is part of the progression of the disease.
Treatment with Carbidopa/Levadopa started to help with these. She remains on the drug today.
There are also some drugs that can be taken to help with the syncope. The problem with her is if there was a negative side effect from a drug, she seemed to get it. But, through study and experience we became good a mitigating if not stopping the fainting spells. During this time her handwriting became very small and somewhat illegible. This too is a common symptom. Her speech has also suffered with some slurring occurring by this time.
Sometime in early to mid 2007 she went to a walker, or more accurately - a rollator (a walker with wheel instead of skids). She was till moving pretty well, but needed it for balance - which was deteriorating. By December of 2007 she went to using a wheelchair most of the time. By early 2008, the wheelchair was full-time. The symptoms mentioned above were all still around, and more pronounced. Her writing was almost illegible even to her. She would write something down and days later have no idea what it said. During 2008 she was using a powerchair for getting out and about some as well as the wheelchair.
In 2009, the symptoms continued to worsen. Her speech was slurring more and more. Phone conversations, even with those that know her became more difficult. The ability to take steps is waining as her reliance on the chair increases. The tremors are more pronounced and make eating difficult. During this time, she went from needing her food cut up to needing help getting it on to her silverware, to needing help eating.
Today, my wife is in her wheelchair, lift chair, or bed all the time. We do get out some, in fact we did a cruise last October. Her ability to write is pretty much gone. Her ability to eat unaided is pretty much gone. Her ability to hold a conversation on the phone is pretty much gone. Her ability to type is pretty much gone. Her tremors are very pronounced and annoying. Her balance is non-existent. You get the picture.
Now for the good(?). Her ability to laugh is still there. Her ability to make me laugh is still there. We try to have a good laugh every day. I do my best to make her laugh as she does me. Her mind is still there (that can be good and bad, she definitely realizes what she has lost and where she is headed). Her memory is still better than mine on certain things. The love she has for her children, grandchildren, and family is boundless. She is one of the most selfless individuals I have ever known. Her concern for others, especially her family far outweighs her concern for herself. I am reminded every day why I married her. I am reminded every day why this disease is a living hell for both of us.
On with the show. As I said the next posts will be "reprints" of posts I have made on my wife and her disease on my other blog.
Multiple System Atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failurs such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of motor coordination. MSA affects both men and women primarily in their 50s.
There is no cure for MSA. Currently, there are no treatments to delay the progress of neurodegeneration in the brain. But there are treatments to help people cope with some of the more disabling symptoms of MSA.
The disease tends to advance rapidly over the course of 9 to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure.
Why "Living with a Snow(wo)man" you may ask? I liken this disease to a "melting" of the individual. Trying to hang on to the loved one you knew is akin to trying to keep a snowman (or snowwoman in our case) whole. The disease is insidious. Watching the progress is like watching a snowman melt. Hence the title.
This blog will be mostly for me. I will try to not be too morbid or self-serving, but hey - MY BLOG! If you want to follow along, you are welcomed. If there are things you like or dislike, tell me. If you think I should not be doing it, or hate it; don't read it. Again - MY BLOG. One thing I am NOT looking for is pity or empathy for me. Although this disease is a trial for me and affects every aspect of my life (whether as the elephant in the room, or just the day to day scheduling), the burden on me is nothing compared to the burden on my wife. If you need to offer pity, empathy, sorrow, prayers, or tears; offer them to her. She is facing the disease with a character, bravery, and dignity that I probably could not muster on a bet.
After this opening, the first posts will be "reprints" of the posts I have done on my other blog. Some of them may not be "clean" posts just about the disease. The new posts will be that, but I want a chronicle of where we've been. First a timeline and an update of where we are today.
Sept 2005 - my wife called me at work and told me she had felt ill trying to get in the door of our house. She said she could not get the key to work and felt disoriented and dizzy. I thought she had had a "mini-stroke"(TIA) and told her to take an aspirin, a vitamin E, and to sit down and wait for me. I went home and took her to the ER. After hours of testing, they determined that she may indeed have had an transient ischemic event. We were told to go home and rest. More testing followed. We are not sure what if any relationship this event had in her present state, but we always start our timeline here when we talk to doctors (and there have been a LOT of those!).
My wife for years and years had told me she would get "dizzy" when walking from a parking lot in the daytime into a store or mall. We thought nothing of it, but mentioned it to the doctor when she had her suspected TIA. During the months following her TIA she would get dizzy and light-headed upon standing, especially after sitting a long time. Going from an air conditioned space (a car particularly) to a hot parking lot was especially bad. She then started experiencing syncope (fainting) upon standing or exertion. She started going to doctors. This is all in the early months of 2006. She was still working full time as a registered nurse, driving, cooking, and otherwise leading a fairly normal life. She just passed out from time to time. She went to cardiologists, endocrinologists, and neurologists; as well as her family doctor. After tests and tests and tests, where she was pronounced a "very healthy woman except that you have this syncope going on", we found a doctor that gave her a diagnosis of MSA in early 2007. However I left out the progression of symptoms.
During 2006 her fainting spells progressively got worse. She could tell they were coming on most of the time, but could not do anything to prevent them. She passed out in the parking lot walking into work a few times. They never told her directly, but we heard she was suspected of being an alcoholic or drug addict by many. She suffered from a loss of coordination as well as some vision problems. By June of 2006 she was out of work. She was told that she was too much of a liability. That was a big milestone for her. Losing one's profession is to lose one's self in our society, to a point. She was using a cane to help with her balance by mid to late 2006. I was accompanying her to the doctors now, as her driving was not as good; and our concern that something serious was going on had definitely set in. We went to many, many doctors; none who could offer any answers.
At UNC Hospitals in February of 2007 (my wife says January, but I am writing this and I remember February) Dr. Georgia Lea gave us the official diagnosis of MSA. I had reached that conclusion from studies on the internet and we had discussed it some in general; but unless you have had it happen to you, you cannot imagine getting a diagnosis like that. A death sentence - no cure, no treatment, no hope. That was a rough day. She made phone calls and we met with our kids and told them. A lot of tears were shed that day.
Back to my wife's symptoms. She had developed Parkinson's like tremors during the latter months of 2006 and into 2007. MSA is considered one of the class of diseases sometimes called "Parkinson's Plus" (it's the "plus" that gets you) and this is part of the progression of the disease.
Treatment with Carbidopa/Levadopa started to help with these. She remains on the drug today.
There are also some drugs that can be taken to help with the syncope. The problem with her is if there was a negative side effect from a drug, she seemed to get it. But, through study and experience we became good a mitigating if not stopping the fainting spells. During this time her handwriting became very small and somewhat illegible. This too is a common symptom. Her speech has also suffered with some slurring occurring by this time.
Sometime in early to mid 2007 she went to a walker, or more accurately - a rollator (a walker with wheel instead of skids). She was till moving pretty well, but needed it for balance - which was deteriorating. By December of 2007 she went to using a wheelchair most of the time. By early 2008, the wheelchair was full-time. The symptoms mentioned above were all still around, and more pronounced. Her writing was almost illegible even to her. She would write something down and days later have no idea what it said. During 2008 she was using a powerchair for getting out and about some as well as the wheelchair.
In 2009, the symptoms continued to worsen. Her speech was slurring more and more. Phone conversations, even with those that know her became more difficult. The ability to take steps is waining as her reliance on the chair increases. The tremors are more pronounced and make eating difficult. During this time, she went from needing her food cut up to needing help getting it on to her silverware, to needing help eating.
Today, my wife is in her wheelchair, lift chair, or bed all the time. We do get out some, in fact we did a cruise last October. Her ability to write is pretty much gone. Her ability to eat unaided is pretty much gone. Her ability to hold a conversation on the phone is pretty much gone. Her ability to type is pretty much gone. Her tremors are very pronounced and annoying. Her balance is non-existent. You get the picture.
Now for the good(?). Her ability to laugh is still there. Her ability to make me laugh is still there. We try to have a good laugh every day. I do my best to make her laugh as she does me. Her mind is still there (that can be good and bad, she definitely realizes what she has lost and where she is headed). Her memory is still better than mine on certain things. The love she has for her children, grandchildren, and family is boundless. She is one of the most selfless individuals I have ever known. Her concern for others, especially her family far outweighs her concern for herself. I am reminded every day why I married her. I am reminded every day why this disease is a living hell for both of us.
On with the show. As I said the next posts will be "reprints" of posts I have made on my wife and her disease on my other blog.
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