Eternal

The essence of someone

is held in the memories

and bound by love

always to remain.

People are eternal

if they are remembered with love.

R.I.P. Carol

Melted

If the sun and sky is dimmer it is because the light of my life went out! I will always love you!





To Carol:

I will always live with what I did and did not do. I am profoundly saddened by my inability to do all you needed. It was not from lack of concern, effort. or love. Our 38 years+ was WAY too short. You were the yin to my yang. I am left with a hole in my heart that cannot heal. Thanks for leaving part of you here with me in our six great children. They salve my wound.


Snow always melts!

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.