What would you do...?

What would you do differently today if you knew it was your last Christmas? Or the last Christmas of a loved one? A good friend?

Even though my wife had a terminal illness, we did not think last Christmas was our last together. We were just weeks back from a cruise, she was feeling pretty good (for her). Who knew?

So, who would you call? Who would you visit? Who would you hug? Who would you kiss?
What would you do? What would you eat, say, buy, sell, give away, hold, or ignore?

We don't know, do we? DO IT!!

Merry Christmas!

Happy Holidays, Merry Christmas, and Happy New Year!!

Well, one week from now, as I am writing this, the first Christmas without my wife in 38 years will be over. I will admit I am not looking forward to it (except for the grandkids). Christmas, heck holidays in general, was/were my wife's "thing". We shall see what happens.

I wanted to take this time to wish anyone affected by or afflicted with this disease a very Merry Christmas, Happy Holidays, and a very Happy New Year. To family members that are dealing with or caring for patients and in memory of those that have lost their battle with MSA as well. I have a saying that I have shared with people and try  to live by - Have as good a day as you can have.

I am still getting a phenomenal number of hits to this site. Not a week has gone by that I have not gotten multiple emails from people with MSA or family members of patients that are desperately looking for some consolation, advice, or just someone to listen. I answer every one gladly. I remember how desperate I was with my wife. I told her and felt many times that the disease was "outrunning" us. As I have stated on other posts here, every time we would come up with a "solution" to an aspect of the disease, the progression of the the disease took us on to another one. To all of you reading this for the first time, or that have not read many posts here; please go to the posts entitled "Maybe this will help.." parts 1, 2, and 3. These posts are a synopsis of my wife's symptoms, their progression, and the "solutions" we came up with to deal with them.

I look forward to hearing from any and all of you. gumbypoole@aol.com

They just keep coming!

Last month - October 2011 - logged the second highest number of visits to this blog in its existence. As I have stated before, I am constantly amazed at the number of hits this site still gets. I feel kind of bad since I hardly ever post here anymore, so here I am.

Hardly a week goes by without me getting an email or a comment from someone expressing their good wishes/blessings on me and my family or to thank me for writing the posts I did. That is extremely gratifying. As I said when I started this, this blog was for me - especially when it started. I will admit as I talked to and "met" other people with MSA I did get some inspiration to try to offer some posts that I thought might help those going through the hell that is a degenerative neurological disease.

I have noticed that the second most popular post here is my post about stem cell treatments. I understand this as one of the great agonies of MSA is the lack of treatment. I am doing more research now and will do an additional post when I feel I have anything new to add. For now I stick by the recommendation of the original post - stem cell treatment, especially since it involves extensive cost and travel, is not something I feel is worth it. It also could be very dangerous. The hospitals that are doing the procedure are not under any medical protocol approvals like we are used to here in the U.S. It is still very much an experimental procedure. I do not want to take away hope from anyone. I definitely know the burning desire to do SOMETHING to try to beat back this evil malady. I also recognize that I am only giving my opinion. However, it is an educated opinion. I have spend many hours researching the stem cell procedures that are out there now. I have even had two email "conversations" with Doctors in China that work in facilities that do the procedures. (both told me, "off the record" that they would not have the procedure done on themselves or a loved one with MSA - FYI) So, I will revisit this sometime in the next six months.

I am still upset by the lack of views the posts "Maybe this will help" parts 1-3 get. Those contain things I wish I had been told when my wife and I were going through the daily trials and challenges of MSA. I recommend you read these if you are a caregiver. I am not claiming to have all the answers. Heck, I don't even have all the questions. What I tried to do was tell you what we faced, and some of the ways we made it better. If the MSA advances for you like it did for us, knowing ahead of time can be a great help. A lot of our "fixes" we came up with only worked for us for a very short time due to the progression of the symptoms.

I wish everyone affected by MSA my best. Family members, patients, medical staff dealing with the symptoms, researchers working on finding out what exactly is going on with the disease and hopefully working on a cure are all in my thoughts. Best wishes and good luck to all of you. Please feel free to comment or write me - gumbypoole@aol.com

The aftermath - a follow up

It was 11 weeks from when I am writing this that the ambulance took my wife away. It was 11 weeks ago that I last spoke to her. It was 11 weeks ago that I was doing chest compressions for 8+ long minutes waiting for the ambulance to arrive. In a way it seems like yesterday. In other ways it seems a lifetime ago.

I am still amazed at the views this blog gets. I am more amazed at the comments. I am extremely grateful for the kind words and thoughts that have been sent my way. I am gratified by the fact that people find some help, information, and attachment here and then take the time to comment on it. As rare as MSA is, there are way too many families out there that are facing this terrible nightmare of a disease. That is the main reason I am posting now. I feel somewhat obligated to do so. However, I gladly would do so every day if I thought I could offer any comfort or help to anyone dealing with this disease (or any of the alphabet diseases).

Even though the diagnosis of MSA is a death sentence, (sorry if that is harsh to anyone reading this that has not accepted this, but unfortunately it is true - at least now) it is so hard facing the end. I am surprised every day at how the loss of my wife is still so raw. In my case I think one of the things that made/makes it so hard is the fact that my wife just "left". I always saw the end as a more gradual thing. Maybe hospice in a bed, surrounded by loved ones, and saying goodbye. My wife passed out and never woke back up. Even though we said our goodbyes, it was not at all what was envisioned. She was not able to say goodbye back. In a way this is a good thing. One of my wife's biggest fears and concerns was a feeding tube, a catheter, and a long drawn out ordeal. I know my wife's condition made her miserable. The inability to communicate was one of her biggest frustrations. She could not speak well at all, with no volume. That make the phone impossible to use. She could not type on her computer due to the tremors and lack of motor control. She was isolated from all those she loved, to a point even those in the same room. I have posts on this site about how many times I said "what?", "excuse me?", or just "huh?". There were a lot of times that she would just say never mind and give up. From that perspective the way things went were definitely for the better. From a "closure" perspective, it was far from perfect; at least for us left here.

I find the days getting easier to deal with. I know this is a good thing. I know this is the natural course. I also know that in a way it makes me feel guilty. It seems like not feeling so sad is not fair to her. But again, I know that a life with nothing but profound sadness is not much of a life at all. I also know with all my heart that she would not want me to be very sad all the time. Every one of us here on earth now will be dead at some point. This is the case with every person that has or ever will live. It is still hard to deal with when it hits you.

The thing that gets me the most is music. I can hear a song from our past, particularly the early days of our relationship, and be hit with a flood of emotions and memories. I still find myself thinking I will have to tell her about something I have seen or heard when I get home that night. Being together for almost 39 years and married for 38+ develops a real attachment at multiple levels. To lose that connection is weird and very difficult to do without. The longest we were apart for those 38+ years was less than a week. To now be at 11 weeks without seeing her or talking to her is still very odd and discomforting.

I will post here when I have something to say. I do check the comments and try to answer anyone that gives me a contact with a question or a request for contact. I do think daily of those that I have "met" through this blog, facebook, and some other MSA-related sites. I would still love to hear from anyone that wants to drop me an email, a comment, or a question. I welcome any of you with questions to look at the three posts here entitled - "Maybe this will help..." parts 1, 2, and 3. They are a synopsis of my wife's symptoms and how we dealt with them.

Until later.

Thanks

I wanted to take a moment to thank all the people from around the world that offered their condolences. I greatly appreciate your thoughts and prayers. The pain has been made easier to bear by the kind words.

I am not sure yet what I am going to do with this blog. I will see. If anyone has any questions or thoughts they would like to share or ask, please do so.

My best to any and all afflicted with or affected by this horrible disease (or any of the alphabet diseases).

Again, thanks,

Scott

Laugh, Live, and LOVE

This past week has been a surreal experience. I have had the unfortunate experience to lose many family members over the years including my father, but nothing has been close to this. I have had many, many thoughts - as I have stated here before, I am more "creative" when emotional (as you can see in the previous posts from the past seven days).

Here are some thoughts on life:

Probably the biggest advice/most important thing I can pass along is amost a tired cliche - live every day as it is your (or your loved one's) last day. Although my wife had a terminal illness, I thought we had time to do and say what we wanted. If you have something you have always wanted to do, if there is any way you can do it (or a close substitute) financially - I recommend you DO IT! If there is something you want to say - same advice - SAY IT! Besides the loss of my lifetime companion, things left undone or unsaid are the hardest for me. This is especially true if these things are simple things. You may want to go for ice cream. If you are a caregiver for someone that cannot move well, that can be hard. It is easier to say to yourself (or your loved one) - "We will do that tomorrow". I used to tell my kids (in fact we had a little chant that I bet they remember) - tomorrow never comes. By definition that is true - yesterday's tomorrow is today. So, waiting for tomorrow is fruitless in many ways.

Try to find something to laugh at. This one was probably one of the things that my wife and I did the best. She had a great sense of humor and I and am a reknown idiot. I do remember we laughed at many things last Saturday (her last day conscious). I am very glad for that. Oh, there were days we wept togther as well. I feel that is important too, but laughter is great for everyone involved. Try to find something that can make you laugh, as often as you can.

Involve family and friends. I feel my wife and I left this one a bit short. It was so easy for us to withdraw and just have each other. That is great, but it means two people are trying to "recharge" each other. When you get run down and depressed, that can be impossible. I believe the most important thing you get by contact with people that love you, and you love, is strength. We all need to be recharged with love, faith, and friendship to make it. Our internal "batteries" can only go so long without a charge. Like I said, if both of you are low on "juice" that will not happen. You are running on empty. The first two points above can help recharge to a point, but ultimately you need other people to pull the "power" from. Our kids and family were close, but see point one - everyone thinks there is going to be a tomorrow to visit. If you are the caregiver, remember YOU need recharging. This is probably the area that I was most remiss in. I felt like I needed to be with my wife every moment I could. Don't get me wrong, I am greatful for every minute. But, going back to point one, I wonder if I had stepped away occasionally if I would have had the strength (or drive, or gumption, or whatever) to take my wife out more, even if it was just to ride around. Caregivers, take care of yourself. I know I am not the first to say that by any means, but it is important enough to repeat often.

Tell those you love that you love them - do it often. Then repeat. 'Nuff said.

As a follow up (and maybe conclusion) to the above points I will get personal again. We have had family and friends around all week. We have had food enough to feed small countries. We have cried together and we have laughed together. All of that has been wonderful In fact, I do not know how I would have made it through the week without it. However, my wife (and I) would have LOVED to have the people, the food, and the fellowship when she was alive. If you know someone that is suffering with an illness, especially if they are limited in movement - go see them! If they are family, you are REQUIRED to! Any of the gatherings we have had this week, had they happened last anytime in the previous weeks, would have thrilled my wife (and me) to no end. If you know a family that is going through something like mine just did, take them a meal or a dessert. Drop them a call. Send them a card. Offer to go shopping for them. I am lucky in that I have six children that all live fairly close by and they helped me with this, but we still did not get everyone together and commune like we have this past week. Like I said, my wife would have loved it, as I am sure most people in her condition would have. Make a point to contact them.

Enough for now. I realize I got a bit "preachy". Sorry. I do feel strongly about this for obvious reasons. I hope I can live up to my own words as I go forward.

TEARS

As I wipe my eyes again

I know,

I'll never be the same.

I think I'm done, 

but they can well back up

whenever I hear your name.

Sure

I laugh at things.

But it's more for them than me.

I wonder if life will ever seem

the way it used to be.

Obituary

Carol's obituary -

Carol Poole

Carol J. Condon Poole of Winston-Salem, 56 left her wheelchair behind forever Monday May 30^th after more than five years battling MSA (multiple system atrophy). She departed after a final selfless act of organ donation with her loving family by her side.

Carol was born in Pennsylvania to Marlen Condon but grew up a true Florida girl in Plantation, Florida. After graduating from Plantation High School Carol attended Western Carolina University where she met her husband-to-be. After becoming a certified operating room technician at Presbyterian Hospital in Charlotte, N.C., she went on to become a R.N. Carol was retired on disability from Forsyth Medical Center where she worked in the operating room for over ten years. Carol was known at work for her compassion, professionalism, and sense of humor.

After WCU, Scott Poole and Carol were married. On May 16^th they celebrated 38 years together as husband and wife. Carol was a loving mother of six children – Christi Waiters, Kimberly Bowers, David Poole, Stephani Poole, Patrick Poole, and Bailey Poole; and a grandmother to Hannah Byerly, Landon Byerly, and Alyson Bowers, all of the greater Winston-Salem area. She was a doting Mom and Nana to all. Her love as a wife, mother and grandmother was endless.

Carol is survived by her above mentioned family as well as her mother Marlen Condon of The Villages, Florida, and her twin sister Karen Parsons and her family of Summerville, S.C

Carol's life will be celebrated on Thursday June 2^nd at the Regency Ballroom of the Quality Inn & Suites 2008 S. Hawthorne Road. W-S N.C. from 6:30 – 8:30 pm. All that knew her are asked to come and share your memories and listen to others share theirs. Food and beverages will be provided. Dress as you wish.

In lieu of flowers, please send donations to:

Team Carol

c/o Trinity Center

640 Holly Avenue

Winston-Salem, N.C. 27101

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.

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.

Normalicy is a fallacy

I have done many posts on either of my two blogs on perpective. One thing this disease (Multiple System Atrophy for those of you just joining and not reading from the beginning) does is redefine normal. Normal depends on your perspective. To a single, childless person a normal morning is entirely different from a person with a spouse and children. A dictionary definition of normal is:

nor·mal   /ˈnɔrməl/ [nawr-muhl]
–adjective
1. conforming to the standard or the common type; usual; not abnormal; regular; natural.


This disease changes normal. This disease changes the definition of a good day. This disease changes everything. (I know a lot of diseases do, I can just comment from where I sit - no disrespect intended)

When I started this blog, it was for a couple of reasons. As you may know or have determined, all the original posts on this blog are reprints from my other blog - Just Some Posts. I wanted to "clean up" the content there and give these posts their own space. I also was (and am) hoping for the addition of a specific audience. I was (and am) looking for people suffering from this disease or people caring for people afflicted with this disease. Although I would love to hear from any and all of you, when I say "looking for" I mean as an audience of readers. One of the real problems with this disease from our perspective is the isolation. You can see from the other blogs, facebook pages, user groups, etc.; that this is the case worldwide. Medical personnel don't know what it is, the symptoms, or much else in a lot of cases. Caregivers and patients are begging for help in dealing with the symptoms and the trouble of getting a diagnosis (and not wanting one when it is this disease). We have yet to meet personally, a patient with the disease except at a convention/meeting in Nashville sponsored by the Shy-Drager Support Group (now the SDS/MSA Support Group - http://www.shy-drager.org/ - wonderful people and organization by the way), over two years ago. It is hard to find information, help, and/or relevant support for this disease and its symptoms. This is improving, but one thing that distresses me about these new support sites is they are so unconnected and disjointed. Everyone and every group is setting up their own sites. I guess I am doing the same here, so I can't be too critical.

My wife and I have been dealing with her symptoms and problems caused by this disease as they arise since 2006. As a problem/symptom would develop - lack of balance, inability to stand, severe tremors that made it impossible to hold silverware, slurring of speech, etc.; we have come up with solutions, or at least solutions that have helped us. We continually change our "normal". One real problem I have with these solutions is by the time we have them worked out, in a lot of cases, they are irrelevant. I tell my wife repeatedly that she is outrunning my fixes. For example, by the time we aquired proper weighted and sized silverware with non-slip plates with edges my wife had become unable to feed herself. Had we known that we would need them, and the products even existed, we would have been better for it. I had hoped this blog would alert some of you at earlier stages of the disease what to expect (at least from what happened to us - I do understand that this disease manifests itself in many different ways - there do however appear to be a lot of similarities) and how we dealt with it. I have tried to do some of this with these posts. I plan to do more with the next post, a complete listing of symptoms my wife has experienced and how we have dealt with it (when we had a "solution").

One other aspect of this disease is the pressure it puts on us with decisions. Small decisions, like what to eat or drink, when and where to go to the bathroom can have literal life and death implications. I don't want to sound overly dramatic, but it is true. One of my wife's real problems throughout this disease has been her syncope (fainting or "passing out"). We have used all the "tricks" and learned lots of our own to help with this, but she still passes out - some days a lot. The bathroom is our real nemesis. There are sometimes when she "goes away" for quite a time. We had an instance recently where she was "out" for 30 minutes and off and on for the better part of an hour in the bathroom. I did not have my cell phone and had no one to assist me or we would have called 911. I could not leave her and could not call. As I finally was able to get her into her wheelchair and out I asked her if she still wanted me to call 911. She was shocked as she did not remember the incident (normally the case) and did not want me to call (and was very glad I did not). As it turned out, we did not need emergency assistance. However, this could have been a life and death decision. Many other seemingly small decisions can be shown after the fact to have been near life and death. The stress involved with these decisions are part of the burden of this awful damned disease.

Like I promised above, my next post will be a recounting of my wife's major symptoms/problems and what we have done/did do to cope.

I am still looking for responses from people suffering from this disease or similar. Please comment or contact me.

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.

This is where we're at

I promised an update and a "real" post in my last abbreviated one. So, even though I still am not sure what to write - here we go.

The disease continues it's advance. My wife is at a point now where swallowing is a problem at times. We sometimes work for 10 minutes on one pill. The good news is she does not have to take much. We have cut out the vitamins and supplements, it became too much of a hassle every day to get them down. Also, between her jaw problems (TMJ, see previous posts) and the swallowing, we have to be aware of her nutrition. Especially without her supplements and vitamins. Thank heavens for Boost.

Speaking is pretty much gone now. She will croak out something from time to time, but mostly she talks in a whisper. With my poor hearing that means a LOT of repeating and questioning. I feel like we are playing 20 questions a lot of the time. We do have a speech therapy session scheduled for next week. I am not sure what can be done at this point, but we will try. It has to be frustrating to her to not be able to communicate. I know it is for me on this end. We do have an eye blink system set up for yes and no questions. I felt like that was "giving up" at first, but it definitely helps. I decided some communication was better than none.

Her life pretty much revolves around her recliner and the TV. Her eyes and concentration do not allow her to read. (she had trouble focusing her eyes and they have a tendency to dart around - another wonderful part of this disease) Her tremors and lack of ability to move make using a computer out of her reach as well. Throw in the above problems with speech and that leaves TV watching as her pastime. The lack of speech even makes using her phone an impossibility.

I really had no plan today, so I guess that is it. I thought I would at least update things. I would still like some responses from any and all that read this out there. I see by my statistics and such that there are some of you from all points in the northern hemisphere. Drop me an email. If you are going through this disease as a patient or a caregiver, I would love to hear from you. If you have questions, ask. We'll be here.