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.

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.