Thursday, July 7, 2011

Personal Update

I haven't made a personal entry for a while, so here goes. It's easy to forget to do this, and then I would not have a history recorded anywhere of what I'm going through. So this is partly for my own record-keeping as well as for the elucidation of any readers who might be curious.

In the last few weeks things have continued to progress (decline) in terms of the Parkinsonism. I have worse sleep, typically only about four or five hours a night. Tremors and loss of balance seem to be getting worse. Yesterday I did fall into a wall and hit my head. Just one example. Putting on shoes and stuff like that requires sitting down, although the most difficult thing I do in the day is brushing my hair and trying to put an elastic band around my ponytail. It can take 10 to 15 min. just to do that, and my arms begin to shake. It's very frustrating and I can't figure out how to do it. It's like maybe like aphasia, where someone is searching for a word -- they know the word that they can't find it.

The tremors are beginning to turn into fassiculations and moving up my legs. My thighs now have tremors. My feet are pretty uncontrollable and painful because of the nonstop movement. Torso and limb rigidity (with the exclusion of the left arm) is increasing as well and general stuckness -- all Parkinson's symptoms. Constipation seems to be a little bit better, possibly because I'm tanking up on vitamin C and magnesium oxide a bit more. Sitting in a chair at the computer for more than about 10 min. is agitating and causes rigidity to the point where I have to jump up out of the chair as best I can, which often means lifting myself by my arms, and walking around the room to loosen up my body so that I can sit down again and take a few more words or do some work.

The interesting thing is that I do not appear to have cogwheeling in my arm. That was determined in my last couple of appointments with doctors. I have begun noticing Edema in my right foot and ankle. Not sure if this is the result of the medication, but I have not change my medication regimen significantly recently. So I'm not sure what I can attribute that to. Perhaps some baclofen which I started as a potential means for reducing the muscle contractions in my feet. I am experimenting with reducing various meds in order to see if the edema reduces. I continue to exercise, by walking, occasional light jogging, and jumping on the mini trampoline every day. I also get into an inversion device and hang upside down for probably 15 min. per day.

I am finding it hard to stay on a protein-centric diet because I like fruit so much, but I purchased a bunch of frozen organic hamburger and chicken at Costco and I keep that available for supplementing my protein intake. I am juicing more with my Champion juicer. Everyday I am having some carrot juice with some spinach or hearts of Romaine or something like that and I throw in whey powder for protein as well as hemp protein powder and rice protein powder and a few other odds and ends. Garlic sometimes. Brain fog has been pretty bad, and driving is a bit more difficult, but I can still manage it.

I have been prescribed intravenous glutathione and phosphatidylcholine on a daily basis by my LLMD. I will begin that tomorrow. I will also continue on the intravenous Rocephin, oral azithromycin, and oral Mepron. I continue to lose weight. I'm about 126 pounds now, down 10 pounds from this time six months ago.

Arthritis in my left toes is beginning to become more painful. My doctor diagnosed it as arthritis last week. A trip to my eye doctor noted that I have the beginnings of cataract in my eyes. I am concerned that that might have been instigated by hyperbaric oxygen treatment. That is one of the known side effects of hyperbarics. I was warned about it but only in the case of somebody who already has cataracts. I probably should've had a baseline eye exam before beginning hyperbaric treatments. The ophthalmologist was surprised that a person at my age would have signs of cataracts, and wanted to have a complete list of my medications to analyze and look at possible side effects of cataract production. There may have been other contributing factors than the hyperbaric oxygen. I will report back when I know.

This skin around my port has gotten a rash again, so after two weeks I pulled the needle. I gave it four days to recover and now is fine so I will reinsert the needle and begin intravenous infusions again today. The procedure for infusion of the phosphatidylcholine and the glutathione is a little complicated requiring the use of the 30 mL syringe and dilution with 5% dextrose and water. I think I will let a professional show me how to do it properly.

Please forgive any typos here. I had to dictate this into my iPad. Speaking of which, I bought a new computer to replace my 10 year-old desktop. It's a Lenovo A700. Pretty cool all-in-one computer. It has a 23" touch screen, which is one reason I bought it. It's difficult enough to use the mouse and the keyboard, so touching things on the screen is a big plus. There's a whole raft of these computers available now and they all seem to have touch screens. HP makes them as do Gateway, Sony, MSI, and Asus. For under about $900 they pack a punch, and eliminate all those cables that go behind and under your desk. The Apple iMacs have prettier screens but cost about $1000 more. I almost went for the 27" iMac but opted for the versatility and cost savings of the Lenovo: built-in speech recognition, TV DVR recording, greater number and types of connections, wider variety of software. I even installed Mac OS X on it as well as Windows 7. Best of both worlds, plus touch!

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