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.