There is a Hell!

Regardless of your belief in Heaven and Hell, I can assure you without a doubt - there IS a Hell! This is not a hell of fire and brimstone. This is not a hell of evildoers or non-believers that I am speaking of. It is a hell of doubts and second guesses. It is a hell of what-ifs, and whys? It is a hell of alarms and cords, tubing and needles. It is not a hell of below - it is a hell of here on earth.

MSA is a hell. The consequences of MSA and other alphabet diseases are HELL!

The flesh is temporary. LOVE is eternal.

We are powerless over MSA. MSA is powerless over LOVE.

I want to send out hugs, kisses, and LOVE to any and all afflicted with this DAMNED disease.

Peace be with you.

Watch what you wish for...

I know most if not all of you have heard the expression - "Watch what you wish for. You just might get it" (or similar). I can attest this is true.

During the time my wife and I have been dealing with this disease, I have often commented on the lack of interaction and contact between people dealing with it. With an estimated 4.6 people per 100,000 population, that does not give a large group to interact with. My wife and I are yet to meet in person  another patient with MSA, except for a MSA national conference and support meeting we went to a few years ago. This was in Tennessee (we live in N.C.), "promoted" nationally, and even at this event there were only ten or twelve patients.

Through this blog, my other "all purpose blog", facebook, and the various forums on MSA support and awareness pages; I have made contact and "met" eight or nine patients or caregivers of patients with MSA over the past six months or so. It has been great to communicate, even distantly, with people that can share and understand exactly what you are going through.

Now for the downside and the reason for the title of this disease. In the six months or so I have "known" these people, two of the people afflicted with this terrible disease have succumbed to it.
The contact I was wishing for (and enjoyed when it occurred) becomes itself a reminder of how insidious and relentless this damned disease is. One fourth of the people I have "met" that have this disease have died within six months of our first contact!

Damn I hate this disease. Bless everyone that is suffering from it - patients, family, and friends - even those that only meet like this.

Stem Cell Treatment - my take

NOTE: I get a LOT of comments on this post that are essentially "commercials" for stem cell treatments. THESE WILL NOT BE PUBLISHED! I have no desire to turn this into a commercial site. If you read what I have written, I do not believe stem cell treatment is appropriate or will help with MSA.

Everywhere you go on any MSA support or information site forum, you will find questions about stem cell treatment. I have done a LOT of research on stem cell treatment, especially as it relates to MSA and/or the cerebellum and medulla. Here is what I have found.

Stem cell treatment is not an approved therapy in the U.S. for most applications. It is still in the research stage in most areas that it has been approved for at this writing. There are some amazing results in very specific instances. The reasons for stem cell therapy not being approved are many, some of which are idiotic (in my opinion) protests for religious or moral reasons. That is another topic for later. Stem cell treatments are not approved for mainstream applications yet because they have not been proven safe or effective. I think some day stem cell treatment will be of great benefit, especially in certain diseases or traumatic injury. I do NOT think MSA will be one of them. Here is why.

Stem cell therapy works by inserting stem cells into a damaged area. Stem cells have the ability to recreate any cell in the body. Where cellular degeneration is involved, this can be a miracle just waiting to happen. MSA, and some other degenerative neurological diseases, involve a destruction of brain tissue especially in the medulla and cerebellum. The dopamine receptors are also specifically targeted by the disease. A bit of background (a disclaimer - I am not a doctor or trained in medicine. I read a LOT and have spoken at detail with a LOT of neurologists. This is not meant to be a scientific dissertation, just informative. I am sure there are mistakes, hopefully none of a major variety. Feel free to correct me.) - in Parkinson's the body's ability to produce dopamine and certain other neurogenic transmitters is compromised (or halted). The receptors and mechanisms to utilize the neuro-transmitters is still intact in most cases. That is why supplementation with L-Dopa is usually effective, especially in the early stages of the disease. In MSA the dopaminic receptors are damaged/destroyed. That is why a large number of MSA patients do not respond to dopamine supplementation. There is no system by which it can be utilized no matter how much is there.

Now the reason for stem cell treatment not working in MSA. The mechanism by which the dopamine receptors and brain tissue is being destroyed is not known. If (and it is a big IF) stem cell therapy were to regenerate the receptors and/or the brain tissue, it would be destroyed again. How about an example - you buy an old house. A few years in you start having electrical problems. You call an electrician and he says you have frayed wiring that is shorting out. You have him replace the wires. Months later you start having the problems again. The electrician comes out and says your wires are frayed again. You find there is something eating at the wires. You know the electrician can replace the wires again. However, even if you completely rewire the house the problem will continue until you find and eliminate whatever is eating at your wiring. (I know, call an exterminator. Easy - but try to find an exterminator that will work in the human brain on an unknown vermin!) MSA has unknown vermin eating at the wiring of the brain. All the replacing in the world will not solve the problem.

There are risks involved in stem cell therapy. There are immense costs involved, not the least of which travel to a foreign country is involved. In my opinion, after extensive research; there is no benefit to MSA patients that outweigh those risks and costs. It would appear the best you could hope for is a short reprieve from some of the symptoms.

Believe me I know first hand how frustrating this disease can be with it's relentless decline, clueless medical personnel, and lack of treatment. I just do not see stem cell treatment as any part of the answer, at least at this stage of development.

Visions

I see you sometimes as you were

laughing, not crying.

walking, not lying.

doing, not trying.

living, not dying.



I see you mostly as you are

sitting, not walking.

quiet, not talking.

with death stalking.


But,


I see you sometimes as you were.

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.

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. 

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.