Still Walking

Still Walking

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Friday, October 27, 2017

Visit of an Old Nuisence During the Week of My Clinic

Every three months I go to the ALS Clinic where a slew of Doctors and medical practicioners come to question and prod me. It is at Jefferson Hospital on Walnut Street. That is in Philadelphia in case you don't know. There is a parking garage a block away on 9th Street that belongs to the Neurology Division.

For some reason, perhaps related to my condition or perhaps related to an accident my wife had witht he car last month, I was very nervous about the drive. I don't know exactly why. I worked in the city for many years and we lived there in the University City area for a while. I have driven the city streets many, many times. In recent times I even delivered my friend Ronald to downtown when he stayed for a week.

I couldn't get a driver so I drove my wife and I there. We had no problems.

The photo was taken of Walnut Street from the examination room I was in while I waited between doctors. I just found it humorous to see a police vehicle that was a Smart Car.

For some reason, about a week before my appointment, an old adversary reappeared. My psoriasis

flared up something fierse. I have had this scourge since I was in junior high school, but in 2012 when I began taking Methodrexate for my arthritis it basically disappeared. They use the same medicine for treating psoriasis. It is also used in chemotherapy of cancer, but it stronger doses.

When I saw flared up, I mean expoded. I haven't had it this bad in 30 years. My whole body was covered and it itched something awful the first couple of days.I'm praying it will fad away soon.It's disgusting. The itching has generally calmed down to tolerable.

I was supposed to have an allergy test. I have been having problems with sinusitis. I generally got some sinus troubles each spring, but then it would clear up by summer. Last year it didn't clear up and was pretty miserable. That was when I was at the doctor's in June and he gave me the antibiotic causing me to have C. Diff and a couple hospital stays. The stuffed up head and runny nose and constant cough returned for an encore this spring and persisted all summer. It also made me very hard of hearing, so I finally went to an ear, nose, throat clinic.

At first they perscribed the same antibiotic that did me in a year ago. I refused to take it, so they gave
me a compound I mix in saline solution and squire up my nose. It goes up one nostril and comes out the other. It did help. I am not hacking or sneezing and my hearing improved. The doctor there also cleaned a lot wax out of my ears. I was given a hearing test and I do have some hearing loss, but frankly, I feel I'm hearing fine now. It was there an alergy test was suggested. However, when I came for it I couldn't take it. I didn't have enough clear skin to administer it upon. Instead I must get a blood test, which I keep forgetting to get.

Hard for me to get up and go these days because of the progression of the ALS. They say I'm doing well, but I have so much fatigue. It is difficult to keep my Blogs up, including this one, because of the fatigue. I am getting very tired already just typing this. Some of this is probably due to my breathing capacity. My FVC is at 48% and my NIF is -17.

FVC stands for forced vital capacity and NIF is negative inspiratory force. They are primary measures of respiratory muscle strength, capacity of air sucked in and then the ability to blow it out again.

Measure forced vital capacity (FVC) and negative inspiratory force (NIF) immediately and every two to six hours thereafter. FVC and NIF are primary parameters to measure respiratory muscle strength, especially in patients without obvious respiratory distress. They have a device for checking these and when i took the tests it sounded very pornagraphic. The Respiratory Doctor, a female, was cheering me on. The first phase is done three times and she stood over me yelling, "Suck, suck, suck." The second phase is also done three times and now she was shouting, "Blow, blow, blow". This time I had dropped in lung intake capacity from 53% to 48%. The NIF at -17 was higher than last time, but that also means my muscles ability to push air out has decreased. I said, "What happens when I reach -1, I die?" I have a sick sense of humor I guess.
Anyway, this decrease ability of my muscles to pull air in and push it out again is probably part of my increasing tireness. With this disease, most patients die from respiratory failure because the muscles, such as the diaphragm, become to weak to make the lungs work. My lungs are actually in very good shape.
The Physical Therapists do a lot of measuring of muscle strength in all parts of the extremities. They also check the walking gait. I'm still walking with just the aid of a walking stick, but the doctors want me to cut the distance I walk each morning by half. That morning walk is a long established routine with me, I really don't want to give that up. I have cut back some on the distance anyway, because my body tells me when I need to head to the car. I will contune to listen to my body.
I am getting more unsteady. My balance has declined. In fact, if I walked on a decline I might fall. (Joke!)
My weakest parts are my hands. It is why I make so many messes. They said I didn't have much less under the skin but bones and tendons. The thing I didn't care to hear and scares me the most is they told me if my hands get much weaker I will not be able to drive.
As far as diet, they were happy I weighed in at 188. To think, a year and half ago I weighted 165. I do not enjoy getting a belly, speaking of which, I did tacitly agree that I'd get the feeding tube after the holidays. I would go up to jefferson overnight and they would sent a edoscope kind of thing down my throat and then punch a hole through my stomach to outside and insert the tube. You get your nourishment with a syringe through the tube. They did say I could still eat what I liked as long as I could swallow without difficulty. So far I don't have any problem swallowing.I am still a bit leary.
I spent a long session with the Pallitive Doctor. That is a polite way of saying Doctor Death. She will oversee my comfort as I gradually fade into the Big Sleep. She is very nice. Her name is Doctor Parks and I found that ironic and humorous. The doctor who delived me into this world was a Doctor Parks and now the one who will escort me out is a Doctor Parks as well.
We discussed the Advanced Directive, or Living Will. I haven't done this yet. It is not easy. You are making life and death decisions for yourself as well as assigning some awesome responsibilities to somebody to make medical decisions for you when you can't. I decided my oldest daughter, Laurel, will be my agent and my next daughter, Noelle, will be her backup. 
I now have to tick off what artificial life supports I don't want. I already changed my mind on the feeding tube. I also told the Doctor I don't was a trechnomy. That is a burdenous thing. She told me most people choose against it.
There are some blocks to mark if you want organs donated. I want to check the one for donating my entire body. I think funerals are a waste of money. I need to find out how I manage to give myself away. What does it matter what they do with the body; I won't be home anyway. 

Tuesday, October 3, 2017

Hope is Gone?

She's been there as long as I have, perhaps longer. In the beginning we would nod it passing and then we would say hello. Finally we became friends. We come upon each other and talk while about the things in our lives. We often spoke of Jesus.

In the picture I am actually pointing to the spot where I first notice something was wrong with my limbs, subsequently identified as ALS. But look just to the left of the path at the large, flat rock. I call that "The Praying Rock".  You see, every morning, year 'round, she would hike up that path to sit on that rock and pray. She was always there at sunrise, facing into the rising light.

I use to call her 'The Cane Lady", because for the first few years I saw her she was carrying a cane. Now it is I with a cane and she doesn't use one anymore. Eventually, I discovered her name, Hope.

Hope has been missing from the rock and from the park going on three weeks now. I am concerned. She was always there, rain or shine, every morning. She lives in Wilmington in a not so great a neighborhood. She told me there was often gunfire in the night. The last time I spoke to her she said she was going to come to my Bible Study; she wanted to hear what I said about Jesus. Now Hope is gone.

I still have the spiritual hope, even though this summer has not been kind to me. The last two months have brought further progression. My walking is a battle between me and my weakening legs, but I keep on stepping out every morning at dawn. It is a three-legged effort these days, with my fine walking stick keeping me more or less upright.

Nothing getting prettier these days at all. My legs are a wasteland of what they once were,  There isn't much real muscle tone left. It is difficult to get up. The legs tend not to support when I am rising up. I have several times now got up on my feet only to fill right back down. Fortunately, when this has happened I have fallen back onto a sofa or overstuffed chair.

A couple weeks ago I took what might be my last tub bath, I enjoy bathing, but it has become exceedingly difficult to get my body out of the trough. I must hook a leg over the top, then try to push myself up with the other leg and my arms until my rump slides onto the tub rim. Usually once to this position I can stand by grabbing the sink and pulling. This time I struggled and struggled to get myself seated on the edge, but as soon as I managed it I simply slid backward back into the water.

My feet look terrible. They feel  disconnected to the rest of me and I can't really reach them anymore. Putting on socks is something of a magic trick and clipping my nails an impossibility.

When upright upon my feet my balance gets tricky. It is as though my feet are on platforms sloping backward, which causes me to often stagger along in the wrong direction and also making an effort not to tumble over.

At the end of May 2016, when I had my first sigh of something being wrong it was n odd feeling in my thighs. Over the last few weeks that feeling has come to dominate my arms. I still don't know how to describe it. First of all, it feels like my major bones aren't connect; that is, like my wrist bones and hands are floating on their own as well as my forearms seeming disconnected from my elbows and my upper arms not fastened into the shoulders as they should be. There is also this...what...current tingling through my flesh. That is what I can't describe, but it feels like something between a tingling and a numbness.

I notice my weakness more. Today I bought a package of toilet paper at the stone had had a very difficult time lifting it from the cart onto the cashier's counter, then afterward, putting it in my car truck. Finally, I couldn't quite lift into the house. I had to kick it over the threshold.

I arms have grown thinner.

I am not complaining. It could be worse. It is just so strange and to a degree, frustrating. I do not feel sick. This is part of the curse, because I feel as if I should be able to do everything I did before, but I can't. I can't walk all that far. I struggle to pick up what a child can often lift with ease. I drop a lot of things. I make messes. And I get tired.

Oh do I ever get tired. Any effort tends to wear me out, and I mean to the point of exhaustion. Fatigue is a constant companion with ALS. Here are suggestions from the ALS Association for handling fatigue:

  • Balancing rest and activity. Save your energy for things you enjoy doing.
  • If someone is available to assist you with mundane tasks like cleaning,
    accept the help.
  • Do not try to push through the fatigue – it will not make it easier the next
  • Use Assistive Devices such as tub chairs, back scrubbers, thick-handled
    eating utensils, etc. An Occupational Therapist can determine what
    assistive devices would be best for you.
  • Get a handicapped parking sticker. Your local department of motor
    vehicles and/or the ALS Chapter Social Worker has the form for this.
  • Try to establish a regular sleeping pattern.
  • Avoid stressful situations as much as possible. Stress is fatiguing. Find
    pleasant, relaxing activities that work for you and do them.
  • Organize/prioritize/plan ahead.
  • Use common sense. If you have trouble walking, don’t resist getting a
    motorized wheelchair. If you have difficulty speaking and are having company in the evening, save your voice for when you want to be able to speak as well as possible.

     That seventh item, avoid stressful situations, is a pip. How do I do that. These last couple months have been really stressful. I've been suffering from sinusitis. Last month my wife had a bad traffic accident that put the car in the collision center for two weeks. She was physically okay, but emotionally not so great. The car was also due for inspection. I took it in just a few days after we got it back and praise God it passed. But I worried about that. She is scheduled for knee surgery next month. And do to more doctors and the accident money has poured out.
Along with the fatigue is the breathing issue. I sleep each night with a respirator over my mouth and nose. This is supposed to help reduce the fatigue. My breathing has grown less string. I get out of breath much more easily.

My lifelong Friend, Ronald Tipton, set up a GoFundMe account in my name. I thank him for caring.
Also  with much gratitude, I thank those people who donated to it. What was received help us through the last two months, but the accident and other unexpected expenses quickly dissipated what was received. But I trust God to provide what must be provided. 

Thank you all.

Now just typing out this post has brought on a good bit of fatigue. I will close and see what next month brings.

And I do pray it brings Hope back.

Saturday, September 2, 2017

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.


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.


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 long as you can.


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.


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.

Tuesday, August 8, 2017

Moving Along: Glad to Be Period

My gosh, the months go by so fast. So far I've stayed on my feet. I can't always feel my feet and I sure can't clip my toenails without a great deal of trembling and fear, but I'm still walking. My friend, Ronald Tipton, called me today with a Blog about an ALS sufferer who is hiking the 600 mils of the Appalachian Trail. His name is Rick Marks  and I'm really wondering how he is managing this feat. (He is the man on the right in the photo.)

Walking that trail can be a challenge for a young and health guy, let alone a 55 year-old with Lou Gehrig Disease. I know I couldn't do it. This guy was diagnosis about 2 months before I was last year. He's lost his speech and his neck muscles won't hold his head up anymore, but his legs must be super-legs.

I've been a walker most of my life and I still go out at dawn every morning and take a hike, although a lot less far than had been my habit and on much less difficult terrain. I walk between 2 and 3 miles now and I know it is time to head for my car. I'm not panting yet, but I can feel my legs getting ready to give up. Admittedly, I am over 20 years older than Mr. Marks, but still walking was something I was pretty darn used to doing. And as you can see here on the right, I am only using one walking stick to keep me from toppling over.

Now, I don't have any ambitions to walk up or down the Appalachian Trail. I had far less demanding dreams. I simply wanted to walk the Northern Delaware Greenway from one end to the other. I have walked each phase of it, but never in one continuous hike. I still old out home, but not on my lonesome. I would like help along the way, some kind of companionship just to keep me safe, especially when we hit some of the gorilla trails in the Brandywine Creek State Park. My biggest obstacle is the same as when I was healthy. How do I walk the blasted thing and then get back? If I park my car at one end, what do I do at the other? I don't really want to hike back again.

I don't have the problems Mr. Marks has. I can speak pretty much as always and my neck is strong enough my head doesn't roll forward forcing me to wear a brace; not yet anyway. My progression is in my arms and legs. I am loosing strength in my limbs. It is limiting, but not totally debilitating. I just need more help to accomplish physical endeavors, and this includes gets caps off new bottles of water or juice. It is hard to convey the deterioration of my muscle structure month to month. It tends to be fairly subtle. My legs, though, which use to be pretty solid from all my years of walking are showing dips and odd ridges now. My shins are looking more boney, somewhat discolored and my calfs are getting down right ugly.

I fell in the bushes along side the house a couple weeks ago while trying to pick up some clipped off branches. That side yard s tricky because it is almost all embankment and I have a definite balance problem these days, but it wasn't my balance that did me in. My legs just gave out. If I'm walking now I can feel when the legs are about to say no mas! So again I wonder, how would I attempt a walk of any distance? Man, how does he do it?

My weight has held steady the last couple months. I weighted myself today and the needle danced
between 180 and 181 pounds. It is heavier than I want to be, but I weighted 180 pounds when I graduated high school, and a lot of people would love to maintain their teenage poundage. At 6 foot I am not considered over weight and frankly don't look particularly fat when dressed. If I am not happy about my Buhdda Belly, my doctors are. They want me to keep my weight up and urge me to eat cake and candy and milk shakes. I feel a bit like those kids Hansel and Greta being fattened up by the witch.

Actually, my back has smoothed out and looks slimmer than it did just a couple months ago. I appear to slimmed about the hips and the wrinkles that had sprouted along my buttocks have gone away, at least for now. Those heavy cords that had grown up over my kidneys (photo left) have also dissipated. I don't know if this is good news or not. Maybe by the end of September much of my back flesh will have fallen away and I'll look skeletal.

My breathing is a bit more strained, I suppose. In a lot of pictures I have my mouth open and my tongue peeking out. It is humiliating. I really should use my respirator more at night, but I don't because the sound keeps my wife awake.

I am still shy about asking for help, but have been getting it anyway. Some people just insist of being helpful people and I am grateful for their help. I really must get over not asking. At last clinic the doctors felt I was doing well and probably will beat those 2 to 5 year life expectancy odds. I don't think about that. I believe you just continue to live your life doing what you like and trust in The Lord for the rest.

Tuesday, July 18, 2017

Beyond the Clinic

I wrote yesterday about my visit to the ALS Clinic at Thomas Jefferson Hospital in Philadelphia. It wasn't a very pleasant day last Friday, thunderstorm early and rain off and on throughout the day. In the way the perfect weather to sit in an examination room for three and a half hours being interrogated, poked and prodded.

But the clinic is a medical thing and happens only every three months. Given what I have it is about the best the medical profession can give me.

Yet most of my life is in a world beyond the clinic, what of that?

The photograph on the left is the world beyond the clinic. I snapped it through the window of the exam room. It is Walnut Street between 8th and 9th. It was a dreary day, as you can probably tell, so I got a lot of reflection from the glass in my photo. That is the world beyond the clinic, so lets reflect on my life in it now.

I have what is described as "an untreatable, incurable, progressive, ultimately fatal disease". That sounds quite scary, like a blurb for a horror movie. Yet, having a fatal disease is rather liberating. What do I have left to fear?  The untreatable and incurable parts are a blessing in a way. There is nothing the doctors can do for me, so I am spared the intrusive tests and never-ending visits to ology specials of all stripes. I am beyond the medical worlds lineup of tortures.

A Facebook Friend died the past Sunday. I forget when we began communicating, but it has been years
and ever since I first was introduced to her she has suffered from cancer. She was regularly and often traveling from her Elverson, Pennsylvania home to her own clinic in Lancaster County"s Dutch Country. Believe me, she went far more often that every three months. Here she would receive her chemo treatment, if her blood test showed she was able to take it that day.

That is Margo on the right and the image is typical of almost all she posted. The smile was constantly there. She had no cure, but she was treatable and thus she endured a lot of inconvenience and pain. Her words were ever upbeat or encouraging and she share many things she found humorous or the joys she had in her family.

I've been spared that kind of inconvenience because my thing is not only incurable, it is untreatable. I hope I can show a smile to the world and be an encouragement that life is worth the effort of living it as she was.

That is not to say my life is without inconveniences and complications. On the left is part of the clinic summary.

Besides suggested equipment, there is the advice about looking for help on preparing meals. At the clinic they have been urging I seek more and more help with doing things like chores.

I have been a total failure at this advice. I struggle all the time with the idea of asking anyone for help.  I have asked occasionally, but it is hard for me to do. I know I will get weaker and my body will fail me eventually, but I have no idea what I will do when such a thing happens.

It has already become embarrassing. I tried cutting out backyard a couple days ago because it is turning into a jungle, but I only managed one-half before I was too tired to continue. The Coke Carton pictured on the right was something I couldn't lift out of the cart to put on
the checkout belt.

Even on my morning walks the fatigue is setting in earlier. I do have to walk with my stick most of the time to keep myself upright. I can manage for short distances and don't use any aid about the house, but outside even the shorter jaunts are calling for my cane.

It is growing more difficult caring for myself. Putting on pants is a chore and socks are a real challenge. It is almost impossible for me to cut my nails. I can't reach my toes and as strange as it may sound, I don't always have the strength to close the clippers over a fingernail.

I have procrastinated on doing a Living Will and Power of Attorney because I hate the thought of burdening anyone with those chores.

My fears are these. Not dying, of course, I know where I am going. I fear ever being sent into one of those Nursing homes and I fear being helplessly alone.

Stephen Hawking was asked what was the worse for him in his condition. He answered, "The loneliness. People don't know how to talk to me." To be honest, I can feel a loneliness creeping in upon me. I seem to be slipping farther away from other people and with it all comes the feeling I am of less use anymore.

At least I can still type and talk, although as strange as it may sound, even these are fatiguing.

Monday, July 17, 2017


It may seem longer since I last reported on my slippery slope called ALS. That is because usually I try to update my condition right around the beginning of each month; however, this month I had my 3-month clinic on the 14th, mid-month, so I waited to treat you to that. The picture on the left is what I stared at three and a half hours yesterday. So, no that is not me leaning against the wall. I haven't deteriorated that far yet, so if you are thinking of missing photos of my flesh, they are coming.

Friday was not a nice day, Thunderstorms early and late. I was fortunate not to have any rain
during my drive. It is hairy enough driving into Philadelphia from my place here in Delaware. My appointment was for 10:00 AM thus I missed the heavier rush hour madness going up I-95. But I didn't completely miss any drama.

Last times I traveled into the mouth of the city beast my directions took me off the interstate onto Callowhill Avenue where streets converged in a terrifying mishmash. I was almost hit a couple times in the merging last time (by jersey drivers, of course). But this time Google Maps gave me a simpler route, off of I-95 at exit 20, left onto Christopher Columbus Boulevard toward Penn's Landing, then left on Spruce to 9th Street, make a right and a couple of blocks north, bingo! Except...

Except I turned on an unmarked street that wasn't Spruce, which then deposited me back on I-95 and to make a long story short, I found myself lost in Center City and a lemming like migration of traffic.

Anyway, despite ricocheting around city hall, I made to Clinic on time.

Clinic is like being captive to a parade. My doctor actually came out to greet me and chat while I was in the big waiting room. Doctor Goran Rakecivik (pictured left) is a caring, nice man from Eastern Europe. He is ranked among the top three neurologists in Philadelphia. I feel I'm in good hands. He took me to the registration, something you have to do every time even though the Hospital oughta have all my info in their computers

He then turned my over to a young nurse (I guess) who escorted my to my home for the day. There she
took my vitals (Blood pressure 134/78). Nobody is going to bother much and a lot of trouble if you're all ready dead. She also weighed me, 182 pounds. I dropped a little since last time despite my newly acquired Buddha Belly. I hate this thing. I had worked so hard to get rid of any excess fat and now my stomach casts a shadow over everything. (Okay, Martha, let's run because here comes the smut...with the naughty bits blurred out, of course.) This picture illustrates how my spare tire has inflated, but it also shows how ugly my limbs are becoming, bumpy, pitted and discolored.

She nurse now left me, so drumroll, please, let the parade begin.

Let me explain the procedure. Over several hours I stay in this little room and various doctors, nurses and therapists come to me. They spend time questioning me and sometimes doing little tests. When one group (there are usually two at a time, but sometimes three and on a couple occasion just a single visitor.

The first thing day came as a trio, two Physical Therapists (both male) and one female named Gabs or Gabby. She was my Occupational Therapist.

As soon as the door was thrown open, one commented to the others
On my knees, how they had shrunk. Hard to see the ravages in these photos. The left leg shows the now deepening rut below my kneecap. You can see somewhat the indents where muscle has been lose in the picture on the right, mainly obvious in my right thigh.
Also, a disturbing aspect is my psoriasis is becoming more prominent lately.

The Physical Therapists spend a good bit of time with me this time. They asked a lot of questions about how I am doing at home. How am I on using the stair? Can I get into and out of bed okay? Actually getting out has not been as much a problem as getting in. I can sit on the edge and pretty much push myself to a standing position. The difficulty is getting a good balance once up. I tend to wobble and stagger like a slightly inebriated sailor on a rough rolling ship. Somehow I do manage to stay upright and make it to the bathroom door where the doorknob holds my hand and steadies me. It is getting down to sleep at night that really jars me. I have trouble lowering me body these days. I usually end up tumbling somewhat forward so my head lands on the bed back and then I fall with a thud to a seated position. This is annoying, but routine now.

They then do some moving my limbs about or asking me to push against their pressure. I have either grown much weaker (I have) or they got stronger. If this was arm wrestling I lost quickly each time. They watched me amble down the hallway and back to see my wobble. Finally one took out one of those little reflex hammers and beat me here and about.

The Occupational Therapist gave me a sticky thing to help with my grip. It feels yucky to hold, but it does seem to work. I was able to pull the inner seal off a new can of coffee this morning using it. She was also showing me pictures of raised toilet seats with handle bars. It was suggested, since I have a walker, that I get a tray that fits upon it so I can transport my cereal bowl from kitchen to living room without splashing the milk everywhere. I do make a lot of messes these days.

This is because my arms and hands are really going to skin and bone. My arm looks like the skinny head and neck of an ostrich. Yessir, my arms are caving in hear and there.

The other day I glanced at my arm and I could see these thick vessels running up along the one side. My arm looked like those bodybuilder arms after they have been pumping iron where the veins stick out so plainly.

But I realized this wasn't any muscle power; these veins were popping out because they had no where to hide in my disappearing flesh.

It is an anatomy lesson to watch my hands. The bones are so visible you can see all the mechanics of
the parts working. Even the palms are starting to show the bones within now, especially on my left hand. Look to the center of the palm and you can see my finger bones. The hands are becoming rather deformed, which is part of the reason I keep making messes. Also they are growing so weak I must ask others to open bottles for me.

My breathing scores were Forced Vital Erect 52%. My supine or NIF is now -20. It was-30 something three months ago. This means my muscles of the diaphragm have weakened. The Respiratory Therapist wanted me using my respirator more to strength those muscles. I tend not to use it because I feel its sound disturbs my wife's sleep.

I get fatigued quicker. Any activity can wear me out, which includes writing this post. I have more saliva, but still no major drooling, and thank God I can still talk.

Not all is disappearing of me. I already mentioned the growing Buddha Belly, but I am getting a couple rows of fat on my back above the kidneys and my bottom is growing all wrinkled. I am turning into a spindly limbed barrel of a body. But my Dietician  still wants me to put on the fat in place of missing muscle. Her parting words on Friday were to go get a milk shake.

Which I did.

Saturday, June 3, 2017

Buddha Belly

Unfortunately, that God is Buddha, so goes the joke.

Of course, Buddha isn't really a God; and perhaps he wasn't all that fat either. You look up images and idols of Buddha, Gautama Buddha, that is, and the representations don't show him as a jolly little fat man with a rotund stomach. Yet, this image of Buddha seems to persist here in the West.

Where does it come from?

Confusion and lack of knowledge, of course. This happy character that often asks one to rub his belly for luck isn't Buddha at all. He is Budai. He was a monk in China from around 907 to 923 AD. His name means "cloth sack", which he is usually depicted carrying. It is a magic bag filled with good things he hands out and it never empties. He is kind of a Far East Santa Claus. Since he is almost always shown smiling and jovial he got the nickname of "The Laughing Buddha" He also became sort of the common depiction in the Western World of Buddha. You'll see a lot of nicknacks and statues of Budai sold as Buddhas, and a lot of restaurants and bars bearing his mistaken name.

So what does all this have to do with me and ALS?

Well, it is because I have been told I should develop a "Buddha Belly", by which they really mean a "Budai Belly". It is we with ALS burn more calories than when we had muscles. We need to keep our body up to what most would view as an unhealthy weight. I read for a guy my height that is 220 pounds. I don't see that as so jolly. I've been there, done that, and didn't like it very much. When I was a skinny teenager I would read these books and the hero was always some dude 6 foot tall and weighted over 200 pounds. That became my desire, something that would hide my skinny chest and visible ribs. I was already 6 foot tall, I just needed the pounds and by the time I was 30 I had attained my goal, peaking out at 215 pounds.

I didn't like it very much. I gradually lost a bit and settled in around 190 pounds for most my so-called
adult life. I had gained something of a Buddha belly that proved stubborn about leaving. A couple of years ago I decided to get serious about it and I upped my exercise to almost fanatic level, ate healthy and avoided sugar and all that good tasting stuff. I dropped my weight down to 165 by spring of 2016 and I was very happy with that. Felt so light on my feet. That middle fat was pretty much gone. (I wasn't using that walking stick leaning in the background yet, either.)

Then at the end of May 2016 Amyotrophic Lateral Sclerosis struck.

Now it doesn't matter how much exercise or walking, with or without that stick, I do, my muscles aren't going to grow and be nice and defined or strong, either. They are wasting away and I have been told to eat all those things I had given up, milk shakes and ice cream and candy and snacks. I have been ordered to put on weight and keep it. I have been told I must grow a Buddha Belly. It is getting there as seen on the left.  I guess I am a long way from competing with a lot of the beer bellies I see out there in the world, but I fear it will continue to balloon outward.

I was to my Primary Physician for the regular 6-month checkup this week. I weighted in at 188 pounds, but that was with my shoes on, so lets say 185. Doctor is happy. I wasn't with that gain of 20 pounds in a year. Everything else was pretty healthy for a dying man. My blood pressure was 130 over 84. All the blood tests they called for were within the normal range, except Cholesterol, but it was only 5 points above the scale. My Creatinine was at 1.60, but that has been steady for the last three years. No one is particularly worried about it.

Probably to most I look kind of unchanged, but I notice what is happening to my body.

My arms are beginning to show the loss of flesh with deepening crevices. I have become really weak, with not a lot of lifting power. I mean, really ridiculous lack of strength. I picked up a 1 quart bottle of V-8 this week from the bottom shelf of my refrigerator and couldn't lift it waist high with only one hand. I have to ask other people to open new bottles of anything, including the V-8, for me.

Two days ago I dropped a plastic plate, supposedly unbreakable, but it broke. Yes, I am becoming more and more clumsy. My hands have deteriorated terribly this year. The loss of hand strength makes it extremely easy for me to drop things. Even keyboarding has become difficult.

My legs, surprisingly, don't show the pitting of the muscles as much, given it was a weakness in my legs that first singled me something was wrong. This is fairly common in a sense. There are two types of ALS, Familial and Sporadic. Familial is just as it sounds, passed down through the family. In Familial cases the weaknesses are more prevalent in the lower extremities.

I have Sporadic, the more common type. In this it is the arms and hands that suffered the most first. Nonetheless, I have to use a walking stick on my walks now.

Also, my breathing has become more labored. I'm not yet to the point of needing oxygen, but I do get out of puff quicker and more often than I did just a few months ago. I fatigue faster as well. This has limited the activities I can perform. I have been mowing our back yard, but just barely and I could tell this week that once summer heat comes I may not be able to do it at all. I have also been trimming some of our bushes, but I can only last perhaps 15-20 minutes before I feel nauseated and need to rest.

My biggest concern is the little woman. She was to her psychiatrist Wednesday (she suffers from Bipolar Disorder and I am her care taker), and her blood pressure was 198 over 126. They are saying it is stress and he suggested we do some traveling. This would be nice, but the health issues over the last year and a half have also left us pretty close to broke. There just isn't money to go off on trips. Frankly, I'm not sure where we go from here.

Maybe Budai has some magic in his sack for us.

Monday, May 1, 2017

Advice Your Doctor Probably Never Told You & Other Pecular ALS Moments

It is very strange this land of ALS. At least this early stage of it is. It's as though I was two entities now. There is a me who feels quite normal, at least in my mind. This me wakes up pretty much like it always has. I do some morning chores about the house until the sun comes up (I am an early riser and a morning person). Then barring horrendous weather, I take my sunrise walk as I have for years and years.

But it is then this other me pushes forward, this me who knows he isn't quite normal, the guy who walks with a stick. The other me, or is it the newer me, doesn't walk as fast or as far, doesn't do anything with speed at all. He drops things...a lot, and he spills and makes messes. Who does this clown think he is, anyway?

Has there been progression? Yes, there has, although I hate calling it progression. Progression seems to imply progress. This is more like regression. My walking is regressing back to the unsteadiness of my toddler time when I first learned the skill. I need the stick to keep me on course, or I wander off in odd tangents to my left or right. However, I am like a Weeble, I wobble but I don't fall down. May the Lord keep me upright, because like the toddler of days long past, if I go down, I don't get up so easily.

I went to clinic at Thomas Jefferson Hospital last month. I do this every three months. The worst part of the whole affair is the drive into Philadelphia. It probably shouldn't be.  I worked in Philly twenty of my early adult years, went to college there and lived in University City for a few years. I know the streets and their ways, and have driven them many times, but I suppose age is creeping over my nerves and I shutter now when I think about that drive.

Ha, my nerves! Good expression for my nerves are falling down on their job, aren't they. If my nerves were acting as they should, then my muscles wouldn't be weakening so and I could put the walking stick away again.

Anyway, clinic is an interesting time. I go  and watch the parade. Doctors and nurses and dietitians and nutritionists and psychiatrists and social workers and physical therapists and occupational therapists and speech therapists and other specialists come calling upon me throughout the day. I'm not under any real treatment because no actual treatment for ALS exists. These people take my vitals, tap and twist my body, ask me questions, give me some breathing tests, watch me walk and how my gait is changing, then give me advice on all things I might try. My last clinic lasted 4 hours. It is thorough. These are caring people looking after me and I appreciate them very much for doing what they do.

I have been sent a respirator and I am trying to use it more. It is a pain because you have to clean the mask and tube and filter every week. This is not hard to do, just a bit annoying. They brought me a nose
hose a couple weeks ago. This is plugged into one end of a tube which is plugged, in turn, into the respirator. It is supposed to free my face up so I can wear my glasses without interference from the month/nose piece on a mask. I found the nose hose even more problematic. It seems more uncomfortable, doesn't want to stay plugged against my nostrils and you must keep your mouth closed, which really cuts down on talking. If you open your mouth the air goes up your nose and right out the mouth and never goes to your lungs. Of no use is that. Thus to sleep in it, you put on a chin strap, a device I have failed to master. I have gone back to the full mask. It really doesn't bother me much and I can sleep with it on.

I was sent some exercises, but am a failure in habitually performing them. They are kind of boring. I miss my old regiment of rowing and using the machines at the Senior Center. I also have this odd tube I should breathe through twice a day for 15 minutes each. I keep forgetting to pop it in my mouth. Besides, it scares the cats.

They got me a leg brace called a toe lift. This is to keep my right foot toes from catching and tripping me. I really haven't had that kind of problem yet and the I can't drive with the brace. I would always be putting it on and off every time I go out and it is somewhat difficult to force into my shoe. I have yet to use it. I have also turned down the few medications they have prescribed. Most are for things that haven't grown to interference yet, like drooling. I am generating more saliva now, but mostly it only causes the edges of my lips to feel overly and constantly moist.

They had prescribed Riluzole and I began taking it after the January clinic. I stopped before the April clinic. It doesn't cure anything, but it is supposed to slow the progression. However, I was getting bad stomach upset at night, which was keeping me awake. I wondered if the medication was the culprit, so I ceased taking it and sure enough after a day there was no more of the stomach problems. I haven't tried it again. It says it might extend survival by two to three months. Are you serious? Two to three months more to live, why bother? Think about the end game to this disease and ask do you want two or three more months of it? I don't want to torture myself with a roiling stomach just to gain a couple months of living in paralysis.

They also said I should be walking with a stick even when moving about the house. I haven't gone to that yet either. I am not tripping or falling on my short shuffles through my rooms.

It is difficult to dress, but not to a point I need help doing it. Socks remain the hardest. Tying my shoes is a challenge. Getting my pants or shorts on to my legs is also an adventure, something of a comedy routine.

Taking a bath presents its own set of problems. Not really the bathing, except I can't quite reach my toes, something that makes nail clipping nearly impossible. Otherwise, I can get down in the tub and scrub myself and shampoo my hair (what's left of it). Getting out of the tub is another matter. It takes a bit of doing, pushing with my arms and my feet planted to the tub sides and getting the old caboose up and over the generally slippery tub side. The other day I wasn't certain I would make it, but the whole embarrassment that would come from having the fire company rescue me from my bath spurred me to super human effort. The thing was my arthritis had hit my right elbow with a good deal of pain and my right arm was near useless, so my usual pushing up with it was somewhat nil. Plus every time I attempted to swing a leg over the side I was hit with a cramp, this leg, then that leg, and back and forth.

They worry about my weight, not that I am too fat, but that I am too thin. When the nutritionist and
dietician did their visit, they were pleased my poundage was up to 185.  That is where it is today and I don't like it. At the start of 2016 I weighted 165 pounds and had worked hard to get down to that. I felt good and comfortable. I had accomplished this feat by not only my 5 mile or more walks every morning, but by hitting the gym three times a week and using a rowing machine at home. I had cut most sugar out of my diet, did not put any on my cereal or in my coffee, avoided cakes and candy, etc.

But now I look at myself and I am getting fat and dumpy. All that belly blubber I had eliminated is back. I am even getting fat rolls on my back, everything more apparent since my muscles are deteriorating. Exercise doesn't help. Nothing can build back my muscles and my diet is a magnet now to fat.

The dietician told me I need to keep gaining weight. I should be eating cake and candy, ice cream and milk shakes. I shouldn't skip any snacks. I needed to quaff down a lot of high calorie food. I turned to the nutritionist and asked, "Are you sure she's a doctor?"  I never had a doctor give me that advice. It has always been the opposite."

If my body is growing fat and flabby, my limbs are going the opposite direction and turning into sticks. Not so long ago I could show some muscle in my arms.

But now they are these bizarre pipes. I could pass for a living skeleton.

My legs used to be fairly decent looking, defined by all the walking I did.  But they are disappearing into shapeless appendages.

Last week I considered my life now. This disease is untreatable, incurable, progressive and ultimately fatal. Since is it untreatable, why do I feel I am being treated? I decided I wanted to live out my life doing the things I enjoyed doing, my walks and my writing anyway. I had been told not to push myself on the walks, but I can't help myself. I had been making it between one and two miles, but I started going a bit further each day and this last week I believe I got up to about 4 miles. Fine, I probably should have left it at my morning cleaning chores and my walk, but I trimmed a bunch of bushes and then I mowed the back yard. Good golly, Miss Molly, the grass was a foot high, it had to go. I did some other things.

But it depleted me. I was a mess by week's end, fatigued and worn. Not only that, but my psoriasis came flaring back with a vengeance. My skin has been relatively clear since I got on methotrexate in 2013. The medication was for my arthritis, but had the side effect of clearing up the patches and redness of psoriasis. I am hoping this latest flare up is from over stressing my body and only temporary. I don't need to be an alligator-skinned man again, especially a fat one.

I am a lousy patient, I know. There is a movie I enjoyed called, "The Straight Story". It is the true tale of one Earl Straight who became determined to visit his brother. Problem was he lived in Iowa and his brother lived in Wisconsin and Earl wasn't allow to drive any more. He made the trip on a riding mower. Along the way there was a nice man who offered him a lift, but Straight wanted to finish what he had started.

He told the guy, "You're a kind man talking to a stubborn man."

That's how I feel about all this advice I have been given. You all are kind people talking to a stubborn man."

Now we'll see where the next three months take me.