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.