I mentioned this to my wife not long ago saying my cheeks were sunken. She claimed she couldn't see this, but my friend, Ronald, noticed right away as we connected on FaceTime. Not that this particularly bothers me. I just don't want to see my bottom four teeth pultruding out over my upper lip as Stephen Hawking's teeth did.
The reason I m posting again is that last Friday (May 3, 2019) I was back to the ALS Clinic in Philadelphia. Actually, I hadn't been to clinic for a while. I was originally scheduled way back in February, but I canceled that one because I didn't want to chance driving into Philadelphia in bad weather. I then changed the date again until March, then April, , but the hospital rescheduled me to the May date.
At least I figured I escaped any snow or ice, but it still proved a miserable date for he drive up I-95.
The weather people had claimed all week that Friday would be nice, warm and dry, so I dressed in an outfit of shorts and T-shirt. This proved less than an ideal choice. The morning was in the 50s, gray and drizzly. Fortunately for me that exam room wasn't cold.
If you have forgotten how this clinic works, there are doctors of differing disciplines that parade through over a three hour period to question, prod and test me. All they are doing is measuring me against my prior clinics to see if the ALS has progressed. There is no treatment they can give me, no cure, just my progress report and off-hand advice.
I know the disease has progressed because I know my body. I've lived closely with it for a long time. It will be 78 years in June. I can tell I have weakened, that I grow fatigued quicker and I drop things more, and there is less and less physical chores I can do. But I am still around for them to thump and thud. When I was first told what I had I read that the usual life expency was two years. I've beat that. It has been three years at this point. This is why I resist what the doctors tell me to do because I am not ready to be turned into an invalid quite yet.
So let's look at some of the tests and the advice.
You can see her holding one test instrument. In her plastic bag is the other. I am not sure if both are called Spirometers or not.
The one she is holding works thus. You take in a huge breath, then wrap your lips over this thing and blow as hard and long as you can.
The other instrument is similar, except this time you exhale all the air in you, pop it in your mouth and suck as hard as you can. You do each test three times. I don't know what anyone standing outside the door is thinking as she roots you on for each test, shouting, "Blow, blow blow"; then "suck, suck, suck."
Oh the most uncomfortable things about this is the great nose clamp she puts on your nose. Also,
when you blow there is no feeling of resistance. It is a very strange feeling.
On the first test I was the same as last time, but on the second I was below last time, so I think this means I can not suck in as much air as before. She again is pushing I use my Trilogy Ventilator more, and I promise I will try.
Others who came in either asked questions. The Dietician was happy because my weight had stayed consistent at 178 pounds. I wasn't. Three years ago I weighted 160 pounds and had worked very hard to get down to that. I had also build up up muscles back then. Now I can't do anything to build up my muscles, but I can keep my weight up and develop a "Buddha Belly".
Two social workers talked with me. They will follow up and see what kind of help Lois and I can get. Lois wasn't thrilled with this, but we need some kind of help.
Near the end came the Physical Therapist, Occupational Therapist and I am not certain about the other guy. I didn't see the speech therapist this time around. It is these Therapists I resist. I don't know why the rush to turn me into an invalid, that status could come later. This trio do a lot of pressing and pushing of my arms, hands, legs and feet.. The one does a bunch of tapping with his little hammer as well. They seem to have not found a lot of change in my strength, yet they want to alter me a lot.
It is also more difficult to maneuver steps with it. I am more likely to trip on the walker and fall than anything.
Then they said I should continue my walks, but only on the paved paths. What fun is that? I am irked enough I had to stop walking in Brandywine Creek State Park because I can't do the hills and trails there; I can't see not walking up along the meadows at Bellevue, and of course I wouldn't be able to do that with a walker.
I failed the push test. In this one of them places their hands on my chest and I am to press against them, then they release and I stumble forward. They do the same with my back. I told him on release I might have ended up out in the hall when he released. Whoops, should not have said that, although it was blatantly obvious. He pointed out if he had did these presses with Gabby (the other therapist) she would have only taken one step in each case and been in balance.
They said the last time I was at clinic I told them I had fallen three times. I don't think so. Unfortunately, I had told about the two falls I had this year. Now they began talking of putting me in leg braces. I have one leg brace that was foisted upon way back in the beginning and I've never used it. It was called a toe-lift brace, but I am lifting my toes so far, not dragging hem.
The worst of all was when the main guy suggested I take a Senior Supplementary Driving Test. I
Now one of the final things I did Friday was join in ALS research. Every time I go now they will take urine and my blood. As much as I hate needles, I'm willing to do it. I also signed the paperwork to donate my body to the research department. There are things they can only examined on the deceased, such as biopsies of the spinal cord and the brain. If I can help them find the cause or cure, great. I'll be done with my body anyway. Better they have it than it get buried somewhere and my family get stuck with funeral costs.
Now to go on and still try to out live my dad. He died at age 94. I still think I can beat that.