Newly-diagnosed

I had a PET-CT scan at a hospital in Tel Aviv last Thursday & received the results yesterday afternoon. There is a lot of technical jargon that I probably wouldn't understand even if it was in English, let alone Hebrew, but the summary is clear enough. It says (translated by me): "The FDOPA mapping supports the diagnosis of Parkinson's Disease (or Parkinson's Plus) with a two-sided [or "bilateral"] impairment to the striatum."



So, pending a return visit to the neurologist, it seems that her initial impression that I have PD was correct. I've got an appointment with her on July 25 but I am trying to have that moved up. (She will get a copy of the results automatically & can call me in at any time.)


I was talking the other day with someone here at work who I hadn't planned to tell when he got a look on his face & said, "What is that?" and pointed. My right thumb and index finger were twitching away & I hadn't even realized it. So I told him. On Monday, someone from Personnel at the head office will be coming to our office to talk all the rights we have as civil servants. When it comes time for Q&A, I will ask her if there are any special provisions for people with PD, and then watch the looks on everyone's faces.


I joined the Israel Parkinson's Association. I indicated that I would like to be in contact with a more veteran PD patient to talk about...everything.


My wife (of 36+ years, thank G-d), our boys (in their 20's) and their fiancee / ladyfriend have been very good. I keep telling them ('cause they keep asking) that I feel fine and neither feel nor consider myself sick.


I quoted Tolkien on my wife.


"The Road goes ever on and on,
Down from the door where it began.
Now far ahead the Road has gone,
And I must follow, if I can,
Pursuing it with eager feet,
Until it joins some larger way
Where many paths and errands meet.
And whither then? I cannot say. "


I told her that as log as we run together, I will run with eager feet. My having PD is just one more chapter in our story.


I am taking Psalm 118:24 as my mantra: "This is the day the LORD has made; let us rejoice and be glad on it." What day is the Psalmist talking about? Every day!


As always, I would be very grateful for any advice, words of wisdom, comments or reassurance.

Jill, thank you for your kind words.

Well...

I stopped by our HMO's clinic, right next to my office, where the neurologist is, to make sure she received a copy of the scan report. The secretary said someone had cancelled their appointment & that the neurologist could see me in 45 minutes (a lot earlier than July 25!).

She said that the scan had confirmed her initial diagnosis. She upped my meds (a carbo-levo combo) from half a pill twice a day to half a pill three times a day & gave me a referral to a physiotherapist. She told me to "keep moving" myself in general and my right hand in particular. I have to go to Tel Aviv again in mid-June to go to the sleep lab & not sleep there but to get a kit of electrodes & whatnot & sleep at home & then take them back to Tel Aviv (weather permitting we'll make a beach day out of it) the next day.

I bought a little rubber (?) ball to squeeze & a deck of cards to shuffle.

I must admit that today I did feel a bit overwhelmed. (Psalm 131 helped); I am hoping that someone from the Israel Parkinson's Association makes contact soon.

ZVBM

I am going to meet on Sunday with a personal trainer / dietician to talk diet (my wife & I are already plant-based vegans) and exercise. I have not heard back from the Israel Parkinson's Association but the local Parkinson's foundation in my USA hometown has a once-a-month virtual support group that I will join at its next meeting.

And I wrote a poem that I will post separately.

I had a nice talk with someone from the Israel Parkinson's Association. She will look for a mentor I can talk with, seek advice from, etc. We will probably have to talk via Zoom as there are no available members in my area.

I spoke yesterday with the personal trainer / dietician that my wife has been working out with for years. He has experience working with PD patients. We know each other very well. He said that the time to get started on getting fit & into shape is now, when I have 100% mobility and my PD is little more than an irritant. Whatever happens as the PD progresses, the load will b easier to bear if I am fit & healthy. My wife and are walkers (we have a large dog) but he says now that we know I have PD, we will have to dial my exercise routine up a notch. He will tailor an exercise regimen just for me and wants me to come to him for a one-hour session twice a week, for starters. Fine, no problem.

He said that my diet needs only a bit of fine-tuning but is otherwise pretty good already. He wants me to quit alcohol entirely; I can do that. I drink very little: A glass of wine with Friday night dinner, maybe a shot of whiskey after Saturday morning prayers (reminder: We're orthodox Jews) and a very occasional beer. We have two holidays a month apart in the spring when I will insist on having some wine but it will be 10 months before the first of these rolls around again. He also wants me to lay off refined oils of any kind (the oil in natural peanut butter or tehina is OK). We can do that too. We do not fry food in oil & I use oil only to bake with. I can find alternative oil-free recipes easily enough I suppose. He wants me to consume 2 tbsp of ground flax seeds daily (sprinkled over stuff, etc.) & says it should help with the constipation. Since I get up just after 05:00 most mornings (not on Saturdays & sometimes not on Friday), he would like me in bed by just after 22:00 even if I'm not asleep by then. The only thing that should keep me out of bed between 22:00 and 05:00 should be the occasional bit of work.

I am absolutely determined to make this work. I will NOT, through negligence, laziness or mule-headedness (no offense to mules), be a burden to my wife & our boys, no, no , no. I have the example of my late Mom to learn from, to learn what not to do. She passed away 7.5 years ago from congestive heart failure. She had diabetes (among other things) & was overweight, and did not take care of herself, on the contrary. In her last year, she had no quality of life. Neither did my Dad (now 92), who showed (I think) incredible devotion in taking care of her. She was very much a burden, much of it self-inflicted. I will NOT, NOT, NOT be like that.

Be well!

ZVBM