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.