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 multiple system atrophy. Show all posts
Showing posts with label multiple system atrophy. Show all posts
Sunday, April 7, 2013
Tuesday, March 29, 2011
Maybe this will help - part 3
THIS IS PART 3 OF A SERIES OF POSTS I DID THAT COVER MY WIFE'S SYMPTOMS AND THINGS WE DID (OR LEARNED) TO HELP. I NOTICED THAT THIS ONE GETS READ SIX OR SEVEN TIMES MORE THAN THE OTHER TWO. IF YOU OR A LOVED ONE ARE SUFFERING FROM MSA (or a similar disease) I HIGHLY RECOMMEND YOU READ THE OTHER TWO AS WELL. THESE ARE THINGS THAT I WISH WE HAD KNOWN IN OUR JOURNEY. Scott 12/15/12
Here we go again with symptoms and complications of my wife's MSA (Multiple System Atrophy for those of you not playing along).
I thought of this one when I was writing yesterdays post. It actually started before all the others, but in a non-intrusive way. (plus I was not involved at that point) I am talking about incontinence.
Urogentital problems are some of the first to show up in most MSA patients. Bladder leakage, especially in women, erection problems in men; and the host of other "plumbing" issues that can occur - usually do.
For those of you that are not on the north side of 50 or females without multiple pregnancies and birth, you may not realize that these problems are quite common among those that do fit into these categories. Therefore the onset of these symptoms is not attached to MSA until MSA attaches itself, in most cases.
We have six children. For those of you who still look for storks or go to the cabbage patch, that means my wife carried and delivered six little people. That takes a toll on the body, especially in the area of discussion here. As most men are, I was ignorant of this fact. I did not know that most women over the age of 40 pee when they sneeze or laugh. (note to women - you guys have done a wonderful job of coverup. But, you need to stop the Poise people. They are blowing it for you!) My wife had been having some "leakage" problems for a while. The move to incontinence was and is a gradual one. MSA speeds this process up, dramatically in some cases.
We do not have any secrets here. I can highly recommend the undergarment products sold by Wal-Mart sold under the Assurance brand. They are of a good quality. They work as needed. They are much less money than the name brand stuff like Depends. Tena makes a good incontinence pad. They have a nightime version that again, really works. It is also less money than the Poise. In our experience, it actually works better.
There are bed pads that can be used for chairs as well as beds. I can tell you, in our experience, the lower priced ones here are fine. They are a backup anyway. I would advise you to put one under the sheets as a backup. We have saved the matress a few times with this one. If no accidents occur, you just leave it when you change the sheets. One other note - always travel with a backup pad/brief or any other products you use. You never know. (there is a post I did called - "To pee or not to pee" that goes into this")
My wife has also gotten some help from medicine. She takes a product called Sanctura, the extended release version. She has been on it for over a year now. Although we would have to take her off it to see what exactly it is doing now, we did notice a marked improvement when she started. Her "control" is better now than is was when we started as well. It has the side benefit of being an anticholinergic. This class of drugs was used to treat Parkinson's symptoms before the discovery and use of Levadopa. So, in addition to helping with her bladder problems it seems to help somewhat with the parkinsonism aspect of her disease. There are other better known products for bladder control. You may see some commercials on TV. The reason for this one, we were told, is the fact that it does not affect the brain function. My wife has the curse of participating in most negative side effects of drugs. Other bladder control medicines seemed to bother her more than this. Other than a dry mouth, this one seems fine. You and your doctor would have to find the best for you. I would recomment you put Sanctura on your list however.
Beyond making you aware of the medicines, the incontinence products aisle that is now in almost any full-line retailer, and the products we have found to be the best deal; I would want to remind you of an important point. DO NOT TRY TO CONTROL INCONTINENCE BY LIMITING FLUIDS!! With the orthostatic hypotension that is prevelant among most MSA patients, it is critical to remain fully hydrated. My wife was trying to control her "leakage" early in this process with the result that she was passing out more often. Not a good trade off. Drink liquids - as much as you can. The benefits outweigh the negatives.
As the title says - Maybe this will help.
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.
Friday, March 25, 2011
Maybe this will help - Part 1
I had mentioned that I wanted to do a post outlining the problems my wife has experienced with Multiple System Atrophy and how we have worked to overcome them (where applicable). I am sitting here with her in a hospital room with lots of time so I thought that now would be good. I am doing this on my phone so forgive typing problems.
Realize MSA is a unique journey for each patient. The symptoms are similar (depending on the sub-type) but may occur earlier, later, or of a much greater or lesser degree of severity in almost all MSA patients. These symptoms, as well as the severity and timing are specific to my wife and her disease path. I hope there are enough similarities here to be of use to someone. This is NOT meant to be a medical dissertation. It will not be scientifically correct in all minutiae. As far as I know, it is all correct and based in fact, but I am not a medical professional, except in as much as a caregiver for any MSA patient has to be. (OK, back on a computer with a real keyboard now)
My wife's disease manifested itself first as syncope (fainting). The things we learned about syncope and some of the "tricks" we have learned to deal with it are as follows:
Syncope or fainting is caused by a lack of oxygen to the brain. In MSA patients (as in most) this is usually caused by a drop in blood pressure. The brain cannot get enough blood to properly oxygenate, so to "save" itself it shuts down. This means the person containing the brain shuts down, thus fainting. When you faint you end up not standing any more, right? When you sit or lie down, your heart can get more blood to the brain because it is not fighting gravity any longer (or as much). Therefore, this is a defense mechanism the brain has for protection against lack of oxygen. Sensible, but dangerous and annoying to the person.
Going from cool (or even "normal" room temps) to hot (or even a bit warmer) causes the blood vessels near the skin to dilate (open up) to help cool the body. This means more blood goes to the skin (ever seen anyone flush when hot?). If more blood is in the skin area it cannot be in the brain. Hence, syncope. My wife's most annoying and sometimes dangerous episodes were when she would get out of her air conditioned car upon arriving at work. When she was walking across the blacktop of the parking lot, (or just turning off the car and opening the door) she would pass out. This happened a few times, to the point the hospital where she worked thought she had a drug or alcohol problem. We started being very careful about temperature changes, especially from cool to hot. We would turn off the A/C in the car prior to arriving at our destination. We would allow some time with the door open, just sitting, waiting for the body to adjust to the temperature.
Syncope also occurs, especially among MSA patients upon positional changes. From a prone position to a sitting position can cause dizziness and fainting. The big one is from a prone or sitting to a standing. This is called orthostatic hypotension and is one of the defining features of MSA. To help this, try to avoid sudden changes in position (going up). Clenching the muscles of the legs and buttocks can help in forcing blood out of the lower part of the body (or to prevent it from entering as fast) and staying available for the brain. When standing, it is harder for the heart to pump blood to the brain. A certain "extra" amount of blood goes to the lower part of the body. In a person with a fully functioning sympathetic nervous system, this is not a problem. The heart rate is increased pumping the blood at an increased rate (raising blood pressure) briefly to counteract this. In a MSA patient, this is not possible. The damage to the connections from the sympathetic nervous system does not allow this to happen. The heart may race, the blood vessels may dilate, and other things that are supposed to happen do, but not correctly or all together, so the blood pressure cannot be stabilized. So, going from sitting to more upright, to standing slowly can help. Always have something or someone to hold on to or to hold on to the patient. Sitting down or lying down again will raise the pressure quickly if necessary. Going slowly, with assistance is the key.
I can see now this is going to be an extensive and long process. I cannot give the information I want to give quickly. So, this is now part 1 of what will be a multi-post process. Let me know if there are subjects or symptoms you would like me to address. I will try to do so. Your own tips and thoughts are welcomed as well.
Realize MSA is a unique journey for each patient. The symptoms are similar (depending on the sub-type) but may occur earlier, later, or of a much greater or lesser degree of severity in almost all MSA patients. These symptoms, as well as the severity and timing are specific to my wife and her disease path. I hope there are enough similarities here to be of use to someone. This is NOT meant to be a medical dissertation. It will not be scientifically correct in all minutiae. As far as I know, it is all correct and based in fact, but I am not a medical professional, except in as much as a caregiver for any MSA patient has to be. (OK, back on a computer with a real keyboard now)
My wife's disease manifested itself first as syncope (fainting). The things we learned about syncope and some of the "tricks" we have learned to deal with it are as follows:
Syncope or fainting is caused by a lack of oxygen to the brain. In MSA patients (as in most) this is usually caused by a drop in blood pressure. The brain cannot get enough blood to properly oxygenate, so to "save" itself it shuts down. This means the person containing the brain shuts down, thus fainting. When you faint you end up not standing any more, right? When you sit or lie down, your heart can get more blood to the brain because it is not fighting gravity any longer (or as much). Therefore, this is a defense mechanism the brain has for protection against lack of oxygen. Sensible, but dangerous and annoying to the person.
Going from cool (or even "normal" room temps) to hot (or even a bit warmer) causes the blood vessels near the skin to dilate (open up) to help cool the body. This means more blood goes to the skin (ever seen anyone flush when hot?). If more blood is in the skin area it cannot be in the brain. Hence, syncope. My wife's most annoying and sometimes dangerous episodes were when she would get out of her air conditioned car upon arriving at work. When she was walking across the blacktop of the parking lot, (or just turning off the car and opening the door) she would pass out. This happened a few times, to the point the hospital where she worked thought she had a drug or alcohol problem. We started being very careful about temperature changes, especially from cool to hot. We would turn off the A/C in the car prior to arriving at our destination. We would allow some time with the door open, just sitting, waiting for the body to adjust to the temperature.
Syncope also occurs, especially among MSA patients upon positional changes. From a prone position to a sitting position can cause dizziness and fainting. The big one is from a prone or sitting to a standing. This is called orthostatic hypotension and is one of the defining features of MSA. To help this, try to avoid sudden changes in position (going up). Clenching the muscles of the legs and buttocks can help in forcing blood out of the lower part of the body (or to prevent it from entering as fast) and staying available for the brain. When standing, it is harder for the heart to pump blood to the brain. A certain "extra" amount of blood goes to the lower part of the body. In a person with a fully functioning sympathetic nervous system, this is not a problem. The heart rate is increased pumping the blood at an increased rate (raising blood pressure) briefly to counteract this. In a MSA patient, this is not possible. The damage to the connections from the sympathetic nervous system does not allow this to happen. The heart may race, the blood vessels may dilate, and other things that are supposed to happen do, but not correctly or all together, so the blood pressure cannot be stabilized. So, going from sitting to more upright, to standing slowly can help. Always have something or someone to hold on to or to hold on to the patient. Sitting down or lying down again will raise the pressure quickly if necessary. Going slowly, with assistance is the key.
I can see now this is going to be an extensive and long process. I cannot give the information I want to give quickly. So, this is now part 1 of what will be a multi-post process. Let me know if there are subjects or symptoms you would like me to address. I will try to do so. Your own tips and thoughts are welcomed as well.
Saturday, February 6, 2010
Even More Questions - originally posted July 30, 2008
You may get this more if you read (or re-read) these older posts: (which are now contained below - read the first post in this blog to get the drift)
"A Serious One" from 4/6/08
"Alphabet diseases" from 11/13/07 and
"Questions" from 1/20/08
I am still trying to get answers to the Questions asked in the post above. I have not found any that are worthy of printing. I have come up with more questions:
How does one handle seeing the continual decline of their spouse and not being able to do a thing about it?
How do you take the inability of your 53 year old wife to get out of bed, or in and out of the shower unaided?
How do you answer questions that beg not to be asked, like: will I see Bailey (our daughter, a rising senior)graduate; will Hannah (our granddaughter - almost 3) remember me; or will I see Landon (or grandson - 6 months) walk?
How do you comfort your bride of 35+ years when she looks at you with tears streaming down her face?
Most of all, how do you offer support and help when you are so damn mad at the world and the situation that all you want to do is scream!? When even your best efforts just don't cut it. When nothing at all makes it go away!?! When the best that doctors can do is "See you in three months".
If you are diagnosed with cancer; even one of the terrible ones, there are treatments and a chance of recovery or remission. Most cancers now have a good recovery rate. (before anyone with cancer takes offense, I am not making light of cancer, just comparisons) She does not get that. We get a gradual, progressive march downhill, with nothing to assist or offer hope.
55 is not a time to be facing the death of a spouse. There is never a good time, but with a known life expectancy in this country of well over 70+, a few decades more might have helped. 53 is definitely not the time to be facing ones own death. As frustrating as this time is for me, I cannot fathom what it must be like to be on the other side of this.
This disease is like the elephant in the room. Everyone can see it, everyone has his or her reaction to it; no one comments on it.
Our kids have stepped it up since the "Questions" post of above. I still get asked "How is your wife?" from people that just want to hear - O.K. or at worst - "about the same". I appreciate the thought (when asked sincerely, not conversationally), I just get weary of the answer.
Down enough yet? I know I am.
Comments welcomed, support for my wife - demanded.
"A Serious One" from 4/6/08
"Alphabet diseases" from 11/13/07 and
"Questions" from 1/20/08
I am still trying to get answers to the Questions asked in the post above. I have not found any that are worthy of printing. I have come up with more questions:
How does one handle seeing the continual decline of their spouse and not being able to do a thing about it?
How do you take the inability of your 53 year old wife to get out of bed, or in and out of the shower unaided?
How do you answer questions that beg not to be asked, like: will I see Bailey (our daughter, a rising senior)graduate; will Hannah (our granddaughter - almost 3) remember me; or will I see Landon (or grandson - 6 months) walk?
How do you comfort your bride of 35+ years when she looks at you with tears streaming down her face?
Most of all, how do you offer support and help when you are so damn mad at the world and the situation that all you want to do is scream!? When even your best efforts just don't cut it. When nothing at all makes it go away!?! When the best that doctors can do is "See you in three months".
If you are diagnosed with cancer; even one of the terrible ones, there are treatments and a chance of recovery or remission. Most cancers now have a good recovery rate. (before anyone with cancer takes offense, I am not making light of cancer, just comparisons) She does not get that. We get a gradual, progressive march downhill, with nothing to assist or offer hope.
55 is not a time to be facing the death of a spouse. There is never a good time, but with a known life expectancy in this country of well over 70+, a few decades more might have helped. 53 is definitely not the time to be facing ones own death. As frustrating as this time is for me, I cannot fathom what it must be like to be on the other side of this.
This disease is like the elephant in the room. Everyone can see it, everyone has his or her reaction to it; no one comments on it.
Our kids have stepped it up since the "Questions" post of above. I still get asked "How is your wife?" from people that just want to hear - O.K. or at worst - "about the same". I appreciate the thought (when asked sincerely, not conversationally), I just get weary of the answer.
Down enough yet? I know I am.
Comments welcomed, support for my wife - demanded.
Wednesday, February 3, 2010
Alphabet diseases - originally written 11/13/07
I have unfortunately learned over the past year about a segment of medicine that I would have rather not. That segment is what I call the alphabet diseases. When you go to the doctor with a complaint or problems you are looking for a diagnosis and then a treatment and/or cure. What you do not want is a diagnosis and a pat on the back. The latter is what seems to happen with the alphabet diseases.
What are the alphabet diseases, you ask? You are aware of some of them such as MS, MD, and ALS. These are terrible diseases in their own right with prognoses that are not good. However, I have learned of others that are as bad and/or worse due to the lack of knowledge and information available. How would you like a disease that when you are seeing medical staff for the first time have to be told what the disease is. Blank stares or mumbles signify a lack of understanding for what the jumble of letters you just threw out mean. Two of these alphabet diseases that I have some personal knowledge of now are MSA (Multilple System Atrophy) and PSP (Progressive Supernuclear Palsy). These are both diseases that have a terrible prognosis and worse than that, no treatment or cures! Not only that, but as I said above they are almost unknown in the medical world as well.
MSA is such a rare and"orphaned" disease that the national support organization had to cancel the plans for the annual meeting due to lack of funds. They have no spokesperson or telethon, like I said they can't even get support for an annual convention. PSP does have a Patricia Richardson (of Tool Time fame) fame as a spokesperson due to her father dying of the disease, but again -ask most medical people what it is and wait for the stammering to begin.
I started this two days ago and have been interupted twice. I have lost my original thoughts and fervor for the subject. Basically it is a warning that you do not want to hear a diagnosis with an alphabet disease in it.
G'Day
What are the alphabet diseases, you ask? You are aware of some of them such as MS, MD, and ALS. These are terrible diseases in their own right with prognoses that are not good. However, I have learned of others that are as bad and/or worse due to the lack of knowledge and information available. How would you like a disease that when you are seeing medical staff for the first time have to be told what the disease is. Blank stares or mumbles signify a lack of understanding for what the jumble of letters you just threw out mean. Two of these alphabet diseases that I have some personal knowledge of now are MSA (Multilple System Atrophy) and PSP (Progressive Supernuclear Palsy). These are both diseases that have a terrible prognosis and worse than that, no treatment or cures! Not only that, but as I said above they are almost unknown in the medical world as well.
MSA is such a rare and"orphaned" disease that the national support organization had to cancel the plans for the annual meeting due to lack of funds. They have no spokesperson or telethon, like I said they can't even get support for an annual convention. PSP does have a Patricia Richardson (of Tool Time fame) fame as a spokesperson due to her father dying of the disease, but again -ask most medical people what it is and wait for the stammering to begin.
I started this two days ago and have been interupted twice. I have lost my original thoughts and fervor for the subject. Basically it is a warning that you do not want to hear a diagnosis with an alphabet disease in it.
G'Day
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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