Huffing and Puffing Through Another Month

I don't let things lie. I looked it up. The description I read said, "ALS: an incurable, untreatable, progressive, ultimately fatal disorder".

'Tis like a line of poetry.

What is this poet supposed to do with that?

Doctors told me on December 1, 2016. Merry Christmas !

Knew it months before they told me. Oh, no, not what it was, not by name, but knew it wasn't good. I knew it on a beautiful May morning when such things should be unthinkable. Sun was up to my left. The air was already warm  though it wasn't much after 6:00 AM. I was taking my daily walk.

Every morning, nearly 365 days a day I took that walk. I think I missed only 6 mornings summer to summer 2015 to 2016.  At least five miles when I went and often more.

My favorite park was the Brandywine Creek State Park. This morning I was in Rockwood Museum Park. It would ever more become my home base. I'll probably never walk Brandywine Creek again. I don't even know how long I'll manage Rockwood.

Coming down a hill, not steep, there started a strange feeling in both thighs. I had never felt anything like that before. I can't even describe it. This was part of the problem, I never could describe it to anyone. Closest I can come is this:

I use to play guitar. Don't see me doing that again.  My hands are pretty wasted, not delicate instruments any more. Anyway, this feeling was like the low E string, the big fat one on the bottom, came loose. When plucked there is nothing but a dull thud, no note. That was my legs, not in the sense of sound, but a feeling like a dull thud, over and over.

It was in my forearms, too, but I didn't notice yet. Wasn't thinking about my arms, just my legs. Here I stood in the middle of a path unsure if I could walk.

I had to.

 I took a few steps with this strange gait, my toes pointing out, especially on the left. I moved in mincing steps.

I thought it would go away, whatever it was. First my belief was it could be walked off, you know, push through the pain. Except there was no pain. My legs did not hurt, they just felt like they weren't connected. I decided to make it to my car and go home. Maybe with some rest it would go away.

It didn't.

It took six months for doctors to figure out what it was; six months of many specialists, many tests, of  much money spent, and nobody had a clue.

I had a runny nose and cough. Oh, yeah, doctor could take care of a runny nose and cough. Whipped off a prescription for an antibiotic. Bad move.

 I got clostridium difficile colitis or C. Diff. It was terrible. You never want to have C. Diff. I nearly died right then and there. They told me I was septic. Septic means full of infection. Might mean full of death. There is another definition of septic, as in septic tank. I was that, too. How can I put this delicately? I can't. I was a septic tank full and overflowing.

No, you never want C. Diff.

But I  had four bouts  and two stays in the hospital. I also drank a lot of down tasting medicine, expensive medicine that none of my insurances covered.

After my C. Diff. was over; summer was waning. I was now sent from pillar to post, like a pinball, bounced from doctor to doctor for explorations and hopefully an explanation. There were no explanations.


Finally, on the 1st of December, six months after the strangeness began,  a diagnosis came. I had ALS and it was incurable, untreatable, progressive and fatal.

INCURABLE

Nothing I can do about that, so forget it. No one can cure something when they can't even figure out why someone has it. We'll just move on then. Maybe all that money collected from people dumping ice water over their heads will lead to a cure.

UNTREATABLE

Oh, good one. Most illnesses that come along have some form of treatment. An icky tasting medicine. A neetle in the arm. A voodoo dance. Blood letting, at the very least. Not this thing. In some ways this is a blessing. I'm not being prodded or poked or stuck with any sharp objects. I'm not running for tests every third day. I'm not living between doctor appointments. I'm kind of free to live what living is left me.  The only sensible approach is to keep on doing the things you like to do...as long as you can.

PROGRESSIVE

That is where I live now, in the progression. Progression is the part where you do as long as you can do. Progression is where you better be adjustable.

So, where am I this one-year-plus since the E string went flat?

My legs and arms have gotten weaker. I still do a morning walk with the support of my trusty walking stick. I walk short, really short, distances without any aid, but if I start wandering off far without that stick I am in trouble. I will get off-kilter and look drunk. I might fall. I do not want to fall.

If I fall I may not rise to my feet because my arms have gotten too weak to push me up. I can pull myself up if there is something to grasp. I can't carry anything of much weight.

I also drop a lot of things because of my hands atrophying along with the arthritis. When I sit or get in bed I do not lower myself gently. At some point I just drop, kerplunk. Getting into bed, or out of a bathtub for that matter, is pretty funny to behold. Sadly, I may even be beyond able to take a bath. Showers are scary due to weakness of leg and unsure balance.

Fasciculations can be fascinating. These are muscle twitches. I was looking at my thigh last night and there was a lot of jitterbugging going on under the skin.

I am getting many more muscle cramps now. They hurt. I get them everywhere and anywhere, I had them in my fingers earlier as I tried to type this piece. Had to stop for a while.

Been lucky so far. I can still talk. I can still swallow. I can still breathe, but I get winded quicker. I have a respirator I use at night while asleep. It is supposed to help strength my diaphragm. Most people with ALS die of respiratory failure.

DEATH

Which brings us to that term, "Ultimately death". You can say that about us all, can't you? They say the average life expectancy is 2 to 5 years after diagnosis. I don't think about death. I believe in Jesus as Savior; I know where I am going. I don't fear that ultimate. I'm still shooting for 100.

You know, I have a double whammy. I've been my wife's caretaker for years. She has Type II Bipolar Disorder. Sometimes I wonder which is worse, her disorder or mine. I say her's. It is a horrible thing that affects her mind. I just have a deteriorating body. My brain, my eyes, my sexual equipment, my inner organs all are unaffected. I am cognizant of what is going on with me. I would not want the horrors of Bipolar on top of this.

Anyway, here we are. Much lies ahead. Pray for us.

Man With a Stick

Why this title? My Doctor wanted me to use my walking stick. This photo was on an early morning walk December 14 and I did take my stick with me. I have to admit I am having trouble getting use to is. I walk awkwardly, but I can still walk, so I still don't feel I need the aid. I also hated to carry anything when on a hike. It does seem to make my pace a bit faster, but it hasn't extended my range. For a person use to covering 5 miles or more on these daily jaunts it comes as a shock to tire out at 2 miles or even less. There were times in the past when I would feel some fatigue after several miles, but I could always push on through it and go a bit further, and never had a fear I wouldn't have the energy to make it back to my car. But when I reach 2 miles now I know that is it. If I am not close to where my car is parked I would be in trouble.

This limitation to walking, as well as other forms of exercise, isn't the only thing I struggle to get use to. Another is the Handicap Placard. A little over a week ago I was sent the application all fixed with the doctor's statement of need. Last week I went to the DMV and got the placard to hang on my mirror that allows me to park in the Handicap Spaces. I have used it twice now and I have a guilty feeling when I do. It is true I have some difficulty pulling myself out of the car and getting my balance, but I can hobble along once up. My walking isn't real pretty, though. I am bent and slow and shuffle some. There are times when I get off course for some reason and stagger off to the side. Sometimes I even unvoluntarily step backward a couple of paces, an odd sensation. The Social Worker tells me I should not feel this guilt and she is right. I do have a definite weakness in my legs, and my arms as well, which makes carrying things difficult. My handicap is legitament. I think of how many people I have seen with Placards that pull into handicap spaces, bound out of their vehicle and practically skip into the store or restaurant.

Last night I attended my first support group meeting. I almost missed it. My wife and I drove over to the church where it was to meet and arrived about fifteen minutes early. The meeting was to start at 7:00 PM. It was dark outside this time of year as expected. What wasn't expected was the church being dark inside. We pulled into the drive through the parking lots and not a single light was glowing inside this church. The place looked deserted and locked up. There were two cars parked on a side lot. I decided to pull down beside them, but had some difficulty finding how you got into that section. When I did and we pulled down by them, they were both empty.

It was very eerie. My wife felt uncomfortable there. We waited about to 7, then I left and drove down to another church just down and across the street. There were some people inside, but it was definitely not the meeting place. The other church had the proper name and this had a different name. We left and headed home and the church was still dark as we passed.

We had not received any messages that the meeting had been cancelled for some reason, so when we got home I went directly to the phone and called the person in charge of the meeting. She answer and said they were at the church. I said I would come back, and did, but my wife choose not to return with me.

There were not many there, four counting myself, but this made it nice in a way for this newcomer. We could talk intimately. There was the facilitator from the ALS Association, a student nurse attending University of Delaware and a lady with a Scotish accent. She had been attending these meeting for a few years with her husband, but he had recently died from ALS so she came for the support such circumstance call for.

I found her husband shared my voice, which is that it grows weaker as the day passes. I wake up and my volume and strength is almost normal, but by the end of the day it is close to a harsh whisper. Her husband lived 10 years after his diagnosis and they mentioned another usual member of the group who was in his 20th year. I told them this was what I need, that 20 year stretch. You see, a few months ago I swore I was going to out live my dad. He died at age 94. I am 75, so I need at least 20 years to beat his record by a year. I had thought then, well, if I am going to make 95 I might as well pick up five more years and make 100. Steven Hawkings has lived with ALS for 53 years, so maybe I can make that 100 yet.

Its funny, when my friends and I were teenagers we sometimes speculated on how we would die. It seemed something so far away in the future it didn't scare us to speak of the how. I had said I wanted to be very old and just walking along one day when every organ in my body just gave up and I fell dead instantly. Others wanted to someday lie down, go to sleep and never wake up, peaceful and painful deaths. We didn't want to have anything where our brain was not functioning.

I pretty much know how I am going to die. This is a incurable, untreatable, fatal disease I have. It is a wasting disease. My muscles will weaken and atrophy. I may lose my voice altogether. I could reach a point where I can't swallow and breathing could become difficult. In fact, that is usually the method the Grim Reaper utilizes to take you out with this disease, respirtory failure.

The irony is that your inner organs aren't affected by it. They keep functioning. The problem with breathing is the muscles that force air in and out weaken and can't do their duty anymore. The brain isn't affected either, so my mind should be fine. That though may not be such a blessing. I will be aware of all that is happening to me.

When my mother died at age 92, back in 2012, as a result of a stroke, her mind was crystal clear. Her body had failed her and she couldn't use her left side and she couldn't swallow and had a feeding tube, but her mind was clear up until the final hours. The hospice nurse had to flee to the hallway where she broke down crying. She said this was rough because most of those patients she had treated mind's were lost to sinility and dementia and they weren't aware, but my mother was conginant of everything. The nurse couldn't deal with that.

I think I can, I think I can.