Hello

I realize it has been a LONG time since a new post. I just am having trouble coming up with original posts. I do not want to do a litany of problems or complaints and I have not been moved with any specific ideas. I have a lot to write, but it would be a rehash of previous post.

If you have not read all the posts here, please do so.

Please, if you have an idea for a post, or a question...recommend or ask!

A real post will follow soon, promise.

Me and the elephant again

Everytime I look, it has been over a month since I posted here. For my fan (I know you are out there), I am sorry. As I have said previously, it is hard to get motivated to do this. Emotion and passion drove the beginning and most of the earlier posts.

The melting continues. MSA is a cruel, dastardly illness. It is evil in the way it affects EVERYTHING! I feel so bad for my wife as she is dealing with being able to do less and less. Her speech, posture, grip, facial expressions, vision, movement, and overall comfort are affected in ways you cannot imagine if you are not going through it. To deal with it second hand is bad, to be the person afflicted has to be hell on earth.

One of the ways we have dealt with this disease has been to try to have something in the not too distant future to look forward to. When my wife was first diagnosed, we made a deal to go on a cruise. We did late that year. We have since been on another cruise; and are leaving on yet another in a week and a half.  By the way, if you are the caregiver of someone with a similar affliction, I can recommend cruising as a good vacation. Every modern cruise ship I have looked at has handicapped accessible rooms, family-style restrooms, and are generally workable for a wheelchair bound person. With the meals, entertainment, and travel happening all around you, limited mobility is not as big an issue. The pricing is very competitive with a stay at a decent hotel. This is especially true when you factor in that the food and entertainment are included for the most part. I also recommend NCL. The "freestyle" cruising is the way to go. Our last three cruises have been on NCL and it is the only way to go. (OK, NCL - a free or discounted cruise for my wife would be welcomed)

I am looking upon this trip with some sadness however. Although we are both looking forward to it, we both realize that this could very well be our last "big" trip. My wife's condition is making it tougher to do the daily things that have to be done, especially when in new and different surroundings. Now, we have not discussed this. I have mentioned the "elephant in the room" problem that occurs (at least for us) when acknowledging this disease. Unless you have been in the situation of having a loved one diagnosed with a progressive and fatal illness, you probably cannot imagine how discussing it is avoided. I just know that we are having more and more problems dealing with day to day activities here to realize that future trips like this probably will not be possible. I know my wife understands this as well.

Facing this realization, among all the others, is one of the things that makes this disease so damn evil. My wife and I have been married for 37+ years. We have raised six kids to adulthood. We did without a lot of things over the years, especially for us. We had a reasonable existance and tried to give our kids a life they would and could look back fondly on. We finally got to a point that we could have enjoyed life with each other when MSA came in. Again, we have not discussed this a lot. This is not just an elephant in the room, but an entire menagerie - rhino in the room, lion in the room, etc. As I have said before here, we still enjoy what we can, when we can. We still laugh as much as possible, just maybe not as long or as loudly.

Anyway, think of us on the ship in the blue waters of the Caribbean sea in early November. The snow is melting anyway, we might as well go to the tropics.

Update

I was working on a catchy title for this one, but the muse is not with me.

This is just an update. I feel somewhat obligated to write occasionally and was not feeling particularly motivated about any one subject.

Like most humans, I find myself feeling sorry for me sometimes. If I can't do or get what I want for some reason, I lament - if only to myself. There are a lot of tasks that I do now that I never did before. I have always had no problem with domestic chores. I enjoy cooking (not talking about grilling a steak or hamburger, but making a meal), I have done the laundry for over a decade as one of my household duties, and many other things. Since my wife has been incapacitated by her disease, I have to do a lot of "stuff" or it does not get done. We are lucky in a sense that our daughter that helps with her Mom during the day is a bit of a neat freak. I have never been one for gratuitous cleaning, she is helping a lot with the actual cleaning vs the wiping the middle of the counters that I do. However, that still leaves a lot of other things that must be done. So, for the most part I get them done.

When I notice me feeling sorry for myself, I just think of my wife. There have been times that I or someone would comment something like "I really don't want to go to the store" or "Man, I hate having to pick her up now, it is so inconvenient" or whatever. On a few of those occasions I have been snapped back to reality by a quiet comment from my wife saying "I wish I could". When you cannot go or do anything, you gain appreciation for everything. As I will complain about having to go to the grocery store, she admits she would love to go. As I whine about making another meal, she mentions that it would be wonderful to cook again. And so it goes.

Imagine you sitting in a chair. Sitting, sitting, sitting.... That is your life. Having a conversation with someone is out, because they cannot hear or understand you. You can't use the phone, because you can't dial the numbers - and if someone dials them for you, the person on the other end can't hear you anyway. You can watch TV, but you can't change the channel because you can't work the remote. The computer is a wonderful device to communicate and keep up with friends and family, right? What if you can't work the keys anymore? How about a book? Can't hold it still and the eyes wander so much and blur so often; not really practical.

So, can't walk, drive, talk, type, read, and so on and so on. At least you can sit in comfort, right? Not really anymore. The tremors are there most of the time to irritate and aggravate. The torticollis continually pulls your head to your chest and bends you forward. Your hands and arms cramp as they draw up and curl inward. Your rear end hurts from sitting so much. You get the idea.

So, when I don't feel like going and getting my wife out of bed, or making another meal, or doing a load of laundry; I just think how it would be to not be able to do anything. I don't feel sorry for myself anymore. The shade is getting harder to find.

If you know someone that is caring for a loved one that is ill, remember them. Give them a call. Give them a break. I respectfully honor and offer thanks and good thoughts for any of you out there doing so. Enjoy what you can, when you can. Appreciate what you do have. Don't regret what you don't.

HELLO...?

I have mentioned before that communication for my wife (and those of us trying to communicate with her) is a very, VERY frustrating thing. I am travelling again this week and one of the things I always try to do is call her at least once a day just to "check in". This is so frustrating for her and me. She has trouble holding the phone to her mouth/ear, and that combined with her inability to speak clearly and with volume makes a phonecall a frustrating experience. She actually does not get many phonecalls now from anyone but myself just for that reason. I know she likes to hear from me (and others) so I make a point to call.

It always makes me so sad to hear her, actually to not be able to hear her. I am constantly saying "I did not hear that" or just "what" or "excuse me"; at almost every comment. I end up cutting the call short just because of the frustration level for her and myself. What is the saddest to me however, is when I call her and she does not answer. What I get (or now got, because Verizon changed our voicemail service and her message was erased) is her voice from three or so years ago. It would tear me up to hear her bright, cheerful, clear voice with volume telling me she was not available. As I have commented before, it is amazing how quickly this disease takes away that which those of us that are not afflicted take for granted; like eating, speaking, walking, driving, etc. It always amazed me that her voice could change so much in such a short time.

We always get some form of conversation in, however; and she made my day today when I said "I did not have anything particular to tell you. I just wanted to say hi". Her response was "I am glad you did".

Like I said, we are just searching for the shade.

Continuing Saga

My job requires some overnight travel. I am lucky to have a boss that is very understanding of our familial condition and my requirement to be at home as much as possible. However, I still have to go away at times. This past weekend was one of these. My wife and I are also lucky to have six children. Our oldest daughter is acting as my wife's primary caregiver currently, when I am at work or away. I am still very mindful of the fact that my wife is more comfortable and secure when I am there, but realize we are very fortunate to have the help we do.

I left last Thursday and returned last evening (Monday). I got a call from my daughter yesterday prior to my leaving to come home. I could tell by the hesitant way she started the conversation, she was not looking forward to saying what she had to say. This has happened a few times before. My mind always starts racing from here to there thinking of the possibilities (which truly are endless) of what she could have happened. She has called to tell me my youngest daughter had wrecked my car, that my wife had this problem or that, or other such news. This occasion was about my wife. It seems she had fallen. It was during a bathroom maneuver. Somehow the wheelchair moved out from under them and my wife and daughter ended up on the floor. So far, not too bad. It also seems that my wife's hand ended up under my daughter - still not too bad.

Now the bad part. The pinkie finger on my wife's hand had curled up and bent in a fashion that caused my daughter to crush the finger. They told me later that in the moment after the fall, while "taking inventory" of what had happened, my wife cried out "my hand!" My daughter realized it was under her and pulled it out. The nail from the pinkie finger remained behind on the floor. The finger was bent in a weird fashion and appeared broken (X-rays later confirmed this). Blood was everywhere due to the torn off fingernail. It apparently was a quite gruesome sight, and as you might imagine - a quite painful one as well. Getting a nail ripped off of a finger and breaking the final joint is not a pleasant experience, I would imagine (I have had a nail ripped off, and a broken hand - but never at the same time).

I came home last night and was shown the hand. It looks like it has been beaten with a hammer. It is very swollen, and extremely black and blue. I did not examine the finger yet, it was dressed and had been bleeding, so we felt it was better to just leave it alone. I will see it this morning when I re-dress it.

My point of this, other than reporting? There is now lots of guilt to go around. My daughter's guilt at not preventing the fall. Her guilt at landing on the finger, etc. Then there is my guilt. If I had been home there would likely not have been a fall. The problem here is one of reality. We all have lives to live. I would love to stay at home and take care of my wife and be with her all the time. Financial obligations do not allow that to even be considered. My daughter's guilt is understandable. However, accidents happen. The goal is to make them as infrequent as possible, and if they do occur - as benign as possible. My wife and I are very lucky to have her to help as she does.

If you are faced with a loved one that has this, or another debilitating disease; you too are (or will be) faced with the question of "do I go to work or do I stay?" Unless your financial circumstances are such that you can live without the income, the answer will be "No". If you are a caregiver, you will always worry about every bump and bruise (as you should). You cannot let fear paralize your actions. In trying to prevent any danger or injury, you are probably opening up the opportunity for more. Life and living are a risk. Pain and suffering are a part of life. This damn disease should be pain and suffering enough for a family for a lifetime.

The saga continues, life goes on - such as it is.

Just looking for some shade

I know I have not posted in over six weeks. I mentioned a while back that this was harder than I imagined when I started. In some ways it is probably different than you may imagine. It is not that I have nothing to say. In most cases it is that I have too much to say. But out of commitment to the four people and a frog that read this, I thought I would write something.

The title of this blog was one of those things that came from passion of the moment. My wife was having a particularly bad couple of days and I told her "you are like a snowman - melting right in front of my eyes." Later that month was when I started this blog. Did you ever try to save snow? I have never seen it done. Just the act of touching it, changes it. You can put a container of snow into your freezer and when you go to get it out it is ice. If you don't put it in the freezer, it is water - in a very short time. My wife is a bit different. She is still her. As I have said before, we still joke and laugh - we just have to work a bit harder at it, and we may stop a bit sooner. She is still the wonderful person I fell in love with almost forty years ago. Her physcial self is changing. This damned disease is wreaking havoc on her ability to do most anything. It is like the snowman in the sun. It may be below freezing, but if the sun hits the snowman - it melts a bit. It changes. There is not much you can do about it.

I have mentioned the other "joys" of this disease. MSA is a beast. It not only causes problems on its own; due to the fact it affects the brain it calls in a lot of other "helpers" to add to the challenges. I know I have written about the spinal torticollis (cervical dystonia) that my wife has to deal with. This is a fun disease all on its own. When partnered up with MSA, it is a real joy. We are constantly picking my wifes head up now. She is constantly leaning forward. It makes almost any activity a real challenge.

For over the past month my wife has had to deal with another alphabet disease - TMJ. Temporomandibular joint (TMJ) is actually the name of the jaw joint. However, it had become synonymous with the disorder of the joint that causes pain and discomfort when opening or closing the jaw - chewing for example. This pain has been so bad that she has not eaten solid food for over six weeks, except to experiment to see if it is better (which it has not been). We are slowly becoming experts on the world of liquid nourishment. Bless the Ensure, Boost, protein powder, V8 Splash, Mott's manufacturers. I have also become quite proficient at making a protein shake that can be ingested without gagging.

Again, I compare this disease to the melting of a snowman. The advance of the disease is relentless. The complications are trying. The challenges to everyday living are monumental. What we both would not give for just one day of "normal" - old normal. Like it was five years ago before this disease started dominating our lives. Although the end of that one day would be hell for both of us. In fact, knowing how the day would end would probably make it hell itself.

Oh well, we will just keep looking for shade.

Again I mention - if you or a loved one is dealing with this disease; we would love to hear from you. One of the other characterics of this disease versus most others is you almost never meet anyone else with it. There just are not enough people afflicted (thankfully) to form much of a community. That makes the disease worse in that you are facing it alone and without information or much support. Please contact us by posting here. or emailing me - gumbypoole@aol.com

What did you say?

I know I have not posted for a while. As I said previously, without making this just a daily or weekly report of the disease, I just cannot be motivated to write. Most of the posts prior were "of the moment" type. I am still wrestling with this. Here are some thoughts today however.

Most, if not all of you reading this can turn to someone else in the room and make a comment on it. If you want to send me your thoughts on this post, you can type a comment. When your phone rings, you answer it and have a conversation if it is someone you want to talk to. Now, imagine none of that were possible.

That is where my wife is now. I tell her that her world is slowly getting smaller. It started by her not being able to drive where she wanted. Then it became so she could not walk where she wanted. That restricts her physically. Slowly, her ability to talk is being taken away. I have said "excuse me", "what did you say", or just "huh" 8,468 times in the past month. I know it annoys both of us.

What does it mean when you can't speak? You can't let people know what you are thinking. There are schools of thought that profess speech as one of the defining features of our humanity. She can make known what she needs, and most of her wants; but the act of discussing what she feels or being able to hold a conversation is gone. Like I said, she lives in a little world. People don't call her because they cannot understand her on the phone. People don't talk to her because they cannot understand her responses. When we go to the doctor now, they end up speaking to me because I am usually translating after the first few words anyway.

So, modern technology has given us many other ways of communicating - right? Texting, IMing, email, blogging, etc. That has helped some, and still is a bit. But, try doing any of those things when your tremors are so bad that you cannot hit the keys. It can take her two to three minutes to type a text with one sentence - and then it will be mostly mispelled words. Emails are OK, but for her to answer one can take all evening and would fail a second grade writing class.

I can only experience this through her frustration. I feel so bad for her. I have tried to think of anything that might help, but I am at a loss. I see her world slowly (or actually to damn quickly) closing in around her. Not being able to communicate with family and friends is horrible for her. We continue to do what we can. She continues to do less and less.

To be, or not... (addtional apologies to the Bard)

One of the things we have come to expect out of medical providers and the field of medicine in this the modern world, is the abiltiy to provide a cure and/or treatment for disease and sickness. I know I have addressed this issue before, but I am at it again as I find the lack of treatment the most frustrating part of my wife's illness from my point of view. The inability to do ANYTHING is unbelievably hard to deal with. Going to a doctor that specializes in parkinsonism and/or MSA is still going to get you an exam, a re-evaluation of medication from a helping with symptoms perspective, and then a pat on the back with a "see you in six months". Knowing that even if she had cancer we could be doing something, is almost too much to bear. (I am in no way making light of cancer. I realize cancer in it's many forms is still one of the largest killers of people. BUT, I am making the point that all but the smallest of percentages of cancer have some chemo, radiation, or surgical procedure that can be done to at least improve the chances of survival and/or cause a remission.)

Dealing with the incessant decline of her ability to do what we all take for granted is frustrating for all of us, especially my wife. We now have to basically feed her with every meal unless it is a simple finger food. Going to the bathroom and all that incompasses is a challenge that grows with every day. Picking up her cup from her chair side for a drink is becoming a challenge for her. We have no relief from the inexorable march of this disease. Just this morning my wife looked up at me with tears in her eyes and said "I don't want to be sick any more". I told her I would give most anything if she was not.

I have commented before that to live with someone that is on death row, so to speak, is a sobering experience. As much as I try, I cannot fathom what she is going through. Yesterday morning I was putting away in her closet some of her winter clothes while she watched. I came out of the closet and she was crying. I went to her and asked why. She sobbed to me "Will I ever wear those again?" I just hugged her.  Unless you are faced with something like she is, you would not even think that way.

I know a lot of people out there, maybe even some of the ones that might read this post, have friends, family, or even themselves, that have been saved from a horrible death by modern medicine. I know there are people now that are going through the horrors of chemo andor radiation; or facing an amputation or transplant. However, as horrible as those things are...

Be glad you do not have one of the alphabet diseases where NOTHING can be done.

Excuse me, are you a rock star? Originally posted April 22,2009

Sorry, I just found this one from the past that I apparently forgot to post when I was "catching up". I was getting ready to post some thoughts on Torticollis, and remembered this.

Spasmodic Torticollis. Great name for a rock band, yes? Cervical Dystonia. Also a good one. Both sound like a lead-in for a heavy metal band with big hair. Well, we have entered the rock band era with my wife's disease. And now, the coliseum is proud to present.......Cervical Dystonia!!!

These two heavy metal names are both monikers of a disease of which my wife now is suffering. As a side effect of her primary illness, we get to sample an entire array of diseases - as symptoms of multiple system atrophy.

Cervical Dystonia is (in layman's terms - I am just now learning about this, over the last few hours) where the muscles of the neck spasm and/or contract on their own. It is annoying and according to my wife (and common sense) very uncomfortable to painful. When she gets tired, excited, or emotional more than a bit, her neck pulls her head towards her chest. This is actually called anterocollis when it happens this way. There are other names for pulling to the side or to the back. I am not sure how common this is, but in her case she cannot pick her head up on her own. I have to push/pull her head to the correct position and hold it there while things calm down.

Ain't life grand! Rock on, dude!!

What next?

I know I have not posted anything new since the recap of all the existing posts from my original blog. This is turning out to be more difficult than I thought. If you read the previous posts you may have noted a theme - I was typically writing from emotion or passion from the moment. To try to post "informationally" is harder than I imagined when I thought of doing this separate blog. I am still working on how to get motivated to write without it becoming just a medical chart of my wife's disease.

A quick update on that - we continue to battle the daily battles; dressing, eating, using the facilities, etc. All seem to be more difficult as days go by. We have been playing with the medications to try to work on what my wife sees as her most annoying symptom - the tremors. It amazes me how such a small change can in dosage can affect her so much. She is now taking 1 1/2 tablets of 25/100 Sinemet (carbidopa/levadopa) every three hours. We have tried going to two tablets every three hours. That one half of a tablet - 33% more totally sedates her. My daughter (that helps care for her during the day when I am at work) and I both have been amazed at how "drugged" that small increase makes her. We also tried 1 tablet every two hours, but that seems not to work as well. So we stay at 1 1/2.

I will continue to work on trying to formulate a format for this so I can do posts regularly. Like I said, I don't want it to turn into a medical chart; but I also realize I can't wait for a passionate moment to do a post like I did in the past. Any ideas or suggestions are welcomed.

If you know anyone with this disease, or you yourself have been diagnosed with MSA - my wife and I would love to hear from you. Drop me a response and we will get back to you. From what I read there are about 7 people per million that have this evil disease. That means there are not a whole lot of people, but there are enough that communication and fellowship is possible.

We are up to date

OK, that gets us current. If you are starting here PLEASE go to the first post and read at least the first one. I advise reading them all as they are part of the documentation of the progression of the disease and our mindset from then to now.

From here on I will try to post thoughts and updates with some regularity.

Comments and suggestions are welcomed.

Welcome aboard!

And then we wept... - originally posted 3-17-09

I am not really sure what this post is to accomplish. It is a bit of a catharsis for me. I hope it will be informational for some, possibly even inspirational for others that may be going through a similar event in their life (although I profoundly hope there would be no others going through what we are - I know there are)


Sunday as we were getting ready to leave Florida for home, my wife started weeping rather uncontrollably. Being the tough macho guy that I am, I kept a stiff upper lip - for about 30 seconds. I HATE seeing my wife cry (or any other loved one), especially a sad, wailing, cry. I asked her what was wrong, but it was one of the teary events where you cannot even talk. She was brushing her teeth at the time, and between the toothpaste, toothbrush, and weeping - communication was not possible. So, I just was just there. Then I teared up myself. Watching her, a grown woman, RN, mother of six, and grandmother of two (with another on the way) not being able to really brush her teeth (we have an electric brush for home, but travel with a normal one) struck me as one of the saddest things I have ever seen. Her coordination to really do the "brushing" motion is just not there any more. So, we wept together. She for, at the time, an unknown reason; me, for what she was going through and what we have to face going forward.

As we got in the car later, she broke down again saying goodbye to her mother. I had a hard time with this one as well as I knew she was unfathomably sad. Goodbyes are always hard. As we got on the road, we composed ourselves a bit. Then we talked. Now, I don't know how many of you have or have had a loved one on death row. (actually not a great comparison as there is always a chance of the governor calling - pretty sure this is above the governor's pay grade) Talk about an elephant in the room! We have talked in small circles around it, but never really in depth or details. This was pretty much the same except she started it with a tearful look and a question that ripped at my heart. She asked me through sobs "Will this be the last time I see my mother's house? Will I die before we get back?" By now, she was crying uncontrollably and I was having trouble seeing the road. I had no witty response. I had no great comeback. I just told her - "We will make a point to.".

I don't remember exactly what was said next, or how we got there; but I told her I was very, very sorry she was sick. I told her I would give almost anything if she was not. We were now weeping again (being a tough, macho type - maybe I was just tearing up a bit - weeping sounds a bit wimpy). She told me she was sorry I had to deal with her. I told her I was where I should be. If I did not want to be where I was, I would leave. I reminded her I was in for the duration.

We rode in silence for a while. I am not sure about her, but I still found my eyes getting wet from time to time. There was once about two hours later where she had dozed off. I looked over at this woman that I married over 35 years ago. She was shaking with her Parkinson's tremors with her hands curled on her lap. She looked so helpless....and sick, I guess. I remembered how just three years ago we were saying goodbye as she headed for work. Her loss of her physical self has been amazingly rapid. I found myself reaching for a napkin to dry my eyes. Luckily, she has not lost any of her mental self. She is still crazy, funny, and enjoys a laugh. We just have to work harder to find things to laugh about.

We made it through the rest of the ride with the elephant safely in the back seat. No more discussions, no more tears. We even laughed a bit from time to time.

To Pee or not to Pee (with apologies to the Bard) - originally posted 3-12-09

I know a lot of people are crying the blues today over the economy (and justifiably so in a lot of cases). However, you have all heard the statement made - "at least you've got your health", probably a million times. If you "have your health" and have remained relatively healthy, you probably ignore the statement or mumble a "yeah" and move on.


The process of waste elimination is a pretty basic need. If you remember basic biology - taking in food and elimination of waste were signs of biological life. If you are a human, the waste elimination process has taken leaps of societal and hygienic improvements from Og and his lot heading for the other side of the bush. We now have restrooms, both public and private for the process. (where is this going?, you are probably asking by now).

As most of you know that would be reading this, my wife is in a wheelchair. She is in it because she cannot walk any longer. She can stand for short periods, but does not have the balance to walk or maneuver well. Most if not all bathroom functions require mobility. To get down to basics, my wife requires assistance for her bathroom functions. (she would probably not approve of this post - but hey, it is what it is) That is the point of this post.

Try taking a wheelchair bound person of the opposite gender to a bathroom when travelling. As I said above - "bathrooming" is a pretty basic need. My wife will signal a need for a stop and then we spend exit after exit, or rest stop after rest stop trying to find a family restroom (single party, oversized, unisex, handicapped equipped restroom becoming available slowly around the world) or a single setup with a lockable door that we can both fit into. We start looking and usually take hours finding a suitable place. It is extraordinarily frustrating to me and her - as well as being a physical challenge for her. I have the utmost respect for those that are installing the family restrooms. They are heaven sent. I just wish every rest stop would have one.

So, next time you are travelling and have the need to use the facilities; when you are able to stop, walk in, do your business, and leave in one stop - be grateful your 401K is all that has taken a hit. Hey, at least you've got your health, and an empty bladder.

DRIVE - originally posted 1/18/2009

Imagine you are out for a drive. You are motoring along. Occasionally you stop to get a bite to eat or to enjoy some of the sites. But mostly you are cruising and taking in the ride.


Suddenly you realize your vehicle is going on it's own. Not too fast, not too slow, but ever moving whether you want it to or not. You realize you are not really even steering the car or choosing the exact direction you are travelling any longer. You run red lights and stop signs. You pass in no passing zones and are passed in others. But, you continue relentlessly forward. There is no reverse.

You would love to just STOP, to pull in somewhere and sit and take in the local flavor. You know, however, the only stopping you will be doing is by crashing or just running out of gas somewhere you don't want to be.

But, maybe moving towards SOMETHING is better than stopping at NOTHING.


Welcome to our life.

A Three Hour Tour, or , Perchance to Drown - originally published 12/2/2008

Imagine you and your spouse, or significant other, are on a nice boat ride called life. You are on this inconceivably large boat in a sea of unimaginable size on a trip of indeterminate length. Once in a while, you go through some beautiful. almost indescribable days where birds sing, wonderful angelic music accompanies you in your daily activities, and everything you want is there before you. Then there are the dark and stormy days where all you can do is hold on to the rail and upchuck your lunch into the water. Most of the days, however, are just a boat ride.


One day your spouse falls overboard, fully clothed, and for no apparent reason. You quickly toss them a line, and say"hold on, I'll get you out!" There is no reason to panic, people fall into the water all the time. Plus, they are a fairly strong swimmer, we will get them out. So, you start pulling on the rope. After pulling and pulling you notice they are not any closer to the boat. You decide you need help.

You go and get the some of the lifeguards that are stationed around the boat. One by one they examine the situation. All of them, after careful thought and deep reflection based on years of training, say "They are in the water. They will surely drown. All we can do is keep them on the line from the boat, and wait." You become more and more agitated and upset. You go and get one lifeguard after another. Some haven't got a clue. All the rest just say, "At some unpredictable time in the future they will drown. Keep them nourished, provide fresh water, and here is a wonder drug in case they get cramps."

You consider going into the water yourself. However, there is no good way to get in, and definitely no way out. So, you sit by the rail and talk to your loved one about the good days where the birds sang, angelic music accompanied you, and all was before you. Meanwhile, it becomes harder and harder for your spouse to keep their head above the water. One of your greatest fears is a storm coming up and causing waves that they surely could not ride out. More and more time is spent just working to keep their head above the water. Meanwhile, you can only sit and watch.

Enjoy your cruise.

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 - originally posted April 6,2008

If you have not read the first post in this blog - please do so. All this is based around the first post.



I wanted to do a blog on perspective. Life and our evaluation of it is based a LOT on perspective. I got a great example of this yesterday.

My wife is disabled!! Officially. Perspective - - -

On face value, that would not appear to be a good thing. Disability is not to be cheered. Ah, official disability is (or can be). My seventeen year old was here yesterday when my wife opened the letter and we were cheering for disability. She made a comment that is was weird that we were happy with Mom being disabled. I explained we weren't, but...

My wife's condition is affected not one bit by what the doctors, bureaucrats, or anyone else labels it. She is no more nor no less disabled or ill than prior to getting the letter. However, getting the letter signifies official legal acceptance of her disability. That will hopefully lead to a lessening of the financial burdens of her condition and let us deal exclusively with the physical ones.

I think I mentioned before how during the diagnosis stage, my wife and I found ourselves cheering and wishing for a diagnosis of MS or Parkinson's. Not to say both of those diseases are not horrific and life changing in their own right, but... Perspective - - -

The other diagnosis we were faced with was of a magnitude worse -MSA. I wrote a blog a while back about the alphabet diseases. The addition of an "A" to "M" and "S" takes a horrible disease and makes it imminently more horrible.

In our discussions about disease and disability my wife commented on her possibility of having MS and/or Parkinson's. I said "I know I was pulling for you to have one of them as well." That caused another comment from my daughter about how we were weird. I had to explain to her it is all about perspective.

Let's have a round of applause for my wife's official disability. From anyone else's perspective that may sound strange. From here it is receiving a standing ovation.

Questions - originally posted 1/20/2008

There are two blogs that I have been thinking of writing for a while. This is one of them.


What do you say to a person you love and have lived with for over three decades when they turn to you and say with tears in their eyes, "I don't want to die"?


What do you do when you have kids and family members that just ask "How is she doing?" and just want to hear "Fine", or "About the same"; even if it is not true?


How do you make people understand that you are living with it every day and that it is not going away and that it is hard? Hard for those of us around her, but even harder for her.


How can you watch your wife of thirty-four plus years not able to get out of bed or up a single step unassisted when you still see her as the eighteen year old you married?


How do you answer a 53 year old that asks you if she will see her daughter, a junior, graduate from high school?


How do you get your kids to get off their asses and recognize their mother needs them? (with one exception, Steph) Not later, NOW!


How do you respond to a social security ruling that denies disability so your insurance is going up to more than your rent every month? How do you deal with insurance and government people that are on a timetable that is slower than a glacier?



What do you do to help when you have seen, in eleven months, a progression from walking slowly, to walking with a cane, to a rollator/walker sometimes - cane sometimes, to a rollator / walker all the time, to a wheelchair sometimes?


How do you convince someone to go out when every movement is a tremendous effort and one of your biggest fears is seeing someone you know or used to work with?


What do you do when you are a control freak and things are out of your control, no matter how hard you try?


I do NOT want any sympathy for me. I am not going to say I am not human. I am not going to say this was not a release for me. But comments on my condition are irrelevant. Sympathy, compassion, concern, and love for my wife is demanded. She needs all of you.


Questions need answering. I don't have the answers.

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

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.