12; 9/8 Saturday 9:45am.
So, on Tuesday the 4th I had another blood draw to test for the coagulant factor. The yield was ok, and I proceeded to the next, and much longer, appointment on Thursday, Sept 6. All of these appointments in the period of time are to assess my body for fitness to the clinical trial of preladenant. On Thursday the nurse encountered problems with their EKG machine, and so, repeated the process three times. Eventually they got a reading they felt was reliable, but it indicated some sort of anomaly. At this point the exam was halted, and I was referred back to my primary internist for further review. (I thought, ‘Oh no’. The clinic I’ve chosen as my “primary care provider” is a teaching clinic so my “primary” rotates in and then out, necessitating explanations. I suppose it to be good for me as well as good for their professional development. But ...) ~ The Struthers neurologist was able to get me an appointment almost right away on the 6th. At the primary care clinic (Creekside) the new resident -Dr, Matthew Gordon- took my story and explanation for urgency of this procedure. He promptly me got me hooked up to another EKG machine; the result was a confirmation of a small anomaly. He then, with interim consult, referred me for a stress test on Friday the 7th at Methodist Hospital. ~ Contrary to my expectations, the stress test was both thorough and exhausting (I was told that it is more so for those who exercise regularly). ~ So later yesterday, I received a call from the internist telling me that the results of the stress test were normal and that I should be ok for the parameters required by the clinical trial (there was no accounting for the anomaly shown by the EKG -just a verbal shrug- and I didn’t pursue the question).~~
I spoke by phone with Anna’s sister Julia yesterday when she called to talk with Anna, who was out shopping. Julia asked about my condition and situation, and after I updated her, she talked about her present experience of depression, which is now improving with the use of an antidepressant. But she spoke also of awareness of forgetfulness (at the end of our conversation she seemed to forget that she had called to talk with Anna). But that conversation did make me think. ~
One feature of the PD diagnosis process and the clinical trial exams is the recurring question(s) of suicide pertaining to an assessment for depression. My usual response is to (pretty much truthfully) deny such considerations, knowing they lead to alarm. But, ... After my conversation with Julia, I recalled my own fluctuation of feelings in the aftermath of the stress tests. I had gone to the Park-Nicollet Clinic in hope of setting-up an online account for “My Chart”. (I was thwarted). Enroute from my car to and through the clinic I found myself feeling wobbly in my walk and a bit disoriented, and not yet knowing the results of the stress test, thinking that all this procedure may be a bit much considering that there really is no cure. Then those depression related questions came back to me, and for a moment, I felt that I could be depressed about my own prospects; no recovery, just a downward, costly maintenance. As I headed home I did realize how good I felt about the moderate weather and the sunshine. Depression passed. ~
But then, what occurred to me further on from Julia’s call, is how the clinic, in monitoring me (us), keeps the question ever-present in my (our) mind(s), and hence, the ever-present notion of the possibility of depression and suicide. ~ Later yesterday, reading about Preladenant, it dawned on me that PD is the result, partially, of loss of dopamine. So is depression. Partially. So, I realize, it may be incumbent upon them -the clinic- to ask about depression and suicide, and that with this PD comes the vulnerability to that condition as well. And so, it is incumbent upon me to keep alert.
12; 9/14 Friday. UpNorth. 11:40am.
Oh, how time goes by, especially when you’re busy with things to do, or just have things to do. I’m struck by the date today -how its now the middle of September already. Seems like we were so recently observing the mellow entry of Autumn with the transition from August to September, and now we’re in the middle of September. In any case, its a beautiful day today; currently at 62degrees, sunny and calm.
I have a number of things to do today including cutting a small portion of the lot, and getting some plants from home (day lillies, a tiger lily, siberian iris, and an amur maple) transplanted. I’d also like to re-start working on the walking sticks. And we’ve spent a good part of this morning already in going to the Y for our workouts. And, of course, I wanted to do exactly what I’m doing at this very moment. And this I’m doing here in the “New Phase” journal as I feel compelled to track the development and treatment of my PD. So that comes next, and before I go to the yard in this beautiful weather. But first before anything else, another pot of coffee, please.~~~
Ok, coffee’s making. ~ Yesterday I finally -after further exam- began the medicinal regime of the clinical trial for Preladenant. Because its a double-blind kind of trial I don’t know what I’m taking at the moment. But, of course, and just as I feared, I get the “feeling(s)” of a difference. Last night already, I thought I detected that the tremor condition was much reduced, though not absent entirely. And I sense that this morning as well. But of course, that’s what I was hoping to feel. But I also “feel” a different sense in my head; I might describe it as “more alertness”, or “something going on in there”. But, again, perhaps this is just what I was hoping for, and am bringing about psychologically. To my way of thinking, if it is the case that I’m “bringing about” these sensations by hopeful thinking, they won’t be sustained over time. Though I have no idea how much time is necessary for such a measure. But then, I suppose that the purpose of those many follow-up clinic visits I’ll be making, and all their questionnaires. In the meantime, I feel fine, prompted also by the combination of my morning workout, and this fine Autumnal day. ~~ Now its time for a bite to eat, then on to the yard and garden chores.
12; 9/17 Monday. UpNorth. 3:40pm.
Last Friday, a night and a day almost, after I began the medication trial, I wrote that I thought I felt better, felt the tremors diminished. I was wrong. It must have been hopeful thinking. For today -indeed, during the course of the weekend- the tremors are as lively as ever. Still, I did do my routine workout to exhaustion. But that reminds me to say that after having been off Ibuprophen for a couple of weeks, yesterday, Sunday, I succumbed to the pain in my body -joint and muscular- and returned to two tablets (400mg) in the morning. Now those I know are working.
12; 10/11 Thursday. UpNorth.
2:pm. I had another clinic appointment Tuesday for the med trials. The nurse pointed out that its been a month already. As they ask how I’m doing -its always the same questions so as to be consistent- I have to say, ‘I suppose I’m doing ok, for I really don’t know what to expect’. Unless the purpose of the medication is simply to stop the progression of the disease (and in that regard, too, I don’t know what to expect), I’d say that I don’t think its getting worse (yet?). But its not getting any better either. I suspect I’m in the placebo phase.
What has been nice is that Jacqueline (I believe, but wasn’t told) organized a long weekend visit by herself and Dan, and Sara from Sioux Falls, during which Conor took a day off, and Paul had off Columbus Day. Further, she organized a family portrait setting at our home, taken by Michael Crouser’s brother, Pete, also a photographer. Many of the shots came out well. 
Jacqueline and Dan left on Tuesday mid-morning, and I had my appointment late morning. Then we came up to the lake yesterday, on Wednesday morning. That afternoon we raked pine needles as we waited for the repair guys to come fix the door. This morning I went out -it was a cold 39degrees- and blew the needles from the roofs of the house and garage. In my own good time, at my own good pace, I can still do stuff.
13; 3/8 Friday afternoon (4:30pm) UpNorth; Pandora (Electronica)
We did go to the Brainerd “Y” this morning, then to the new cosmetology school for a haircut (they’re inexpensive and we offer our heads for their learning). I haven’t journaled yet today, nor done my writing exercise, so... I’ve come here to begin to rethink that notion that “I won’t be defined by (age, Parkinson’s Disease, arthritis, diminishing sight,or whatever)”. I’m beginning to think that’s silly denial. Its as though, in my case, none of those things affect, or effect, how I approach matters of interest in my life.
It is true that my personality (INTP) predisposes me to many attributes of my behavior. I am, indeed introverted (and like that preference); I like to consider information and options privately, and I like considering options and resources before committing. And I am, for sure, guided thoughtful reasoning, even if my logic isn’t always complete. And true enough, exercising my preferences, probably slows me down. But such exercises don’t make my vision blurry, my joints ache, or my walking and movements slow, stiff, shaky, wobbly and wooden. My personality preference supported my playing of racquetball, photography, and essay writing. My physical condition militates against all three.
But on the up side, racquetball is really the only thing I had to completely quit. And even at that, there are many guys who were not able to play with enjoyment until age sixty-nine. I had much enjoyment and satisfaction playing through the years, not to mention the camaraderie and friendships that developed. I am very grateful for my racquetball experience. And now I still get much pleasure from my physical exercise routine at the “Y”; pleasure from the pain. And as the Winter passes away I will still ride bike. I have not given up photography; indeed, thanks to Anna and Jacqueline I have two new digital cameras to get used to. And as for essaying, well, I never did follow-through on that with the determination required. But instead, I have pursued journaling with some regularity, and that’s right next to the personal essay in genre-speak. And with the tools I have in this Mini and the Google and MS products, I still can fire-up a desire to essay. If I want to. But there are hurdles. There is real discomfort and pain. Cautionary movement.
(13; 3/9) I guess that with this entry -begun yesterday but unfinished- I was crying and complaining; pitying myself. Well, I back to finish off this entry by accepting that that is indeed how I feel now and then, but that I do realize its up to me to continue to make the necessary efforts required of whatever I want to undertake. And, yes, we all age into limitations that we must accept and move on. So, on this conclusion I’m going now to my essay folder and pick out an unfinished draft, or maybe even start anew, and just hope that my typing skill will still improve as I go. Bye.
13; 3/3 Sunday evening at home.
I have another med trial clinic appointment on the 15th of this month. That will mark the midpoint of the trial, and the time when the medication will be switched to whatever I’m not getting now (recall that this is a double-blind study). As to my condition now, I’m not sure exactly; and that, in part, is why I want to do these journal entries; hoping that the process of writing will help me better know and express how I am.
I do know that I am tired of it. But I can’t really say that I am any worse than five months ago. With some exceptions. I do drool more readily know; this has become something I must be steadily on guard against. And my walking has become -at least I sense- more wobbly. But I can’t say my speech is any worse -and, it may have improved, and I don’t sense the tremors any worse than 5-6 months ago. I do think, though, that I have a more pronounced sense of my brain being “loose” in my head when I am jarred or moving too swiftly. And also, I am very aware of sleepiness overcoming me, especially as I read; though, not to put me to sleep for an hour or more as the doctor inquires about, but rather 5-10 minutes satisfies and refreshes.
In an effort to “get my mind around” this condition I’ve done a bit more reading here regarding the Lewy bodies produced by the alpha-synuclein intraneuronal inclusion proteins that destroy and fill the dopamine-producing neuro cells. Also, here I’ve read of how those proteins aggregate. There seems to be no stopping the process, and no going back. Just a bit depressing; but not, depression. Yet.
For, on the other hand, I have been able to continue my physical exercise workouts (gross muscular and aerobic) at the “Y”, and even increase them a bit. (A few weeks ago, after watching the guys play racquetball on a Wednesday, I was so enthused that I went on my own the following day, and just knocked the ball around the court for about forty-five minutes. That evening and the next day I was, once again, so sore in my muscles and joints, that I recalled then what it was that supported me leaving the game behind. (But I will say that, on my own, I didn’t hit the ball too badly). So my gross movement ability is somewhat encouraging.
Yet my handwriting gets evermore worse; thankfully, I have my HP Mini and Google. I am now looking forward to the better weather of Spring and Summer. I received for my birthday two new cameras, one, a slightly used Nikon (P60) that Jacqueline brought up for me, and, unbeknownst to her, a Canon that I had set my sights on and Anna bought for me. Having puttered around the house with them I now look forward to getting out on my bike and around the city to see what I can do to justify these cameras. They both have a stability feature!
And then, there is the yard and garden. I do look forward to these works. This year I’m going to again give a try at the Canna plants. I like their leaf and flower. Saving the tubers over the Winter has always been the problem. But now I’m borrowing an idea from Chuck, racquetball player, that calls for a small light bulb in an insulated box in the garage. O, Winter does get long (even though I use the weather of Winter to justify my time indoors).
And so it is, the PD symptoms persist, and perhaps some increase; I’m tired of the symptoms, but also getting used to them. I can still do what’s necessary; can still do much of what I like, and some of what I don’t like.
13; 3/19 Tuesday afternoon (3:30pm) Home.
I had my mid-way (through the medication study trial of one year length) exam on last Friday, 15 March. To Anna’s question as to what he thought, the doc could only say that it appears to him that the disease is progressing. Otherwise, I’m in acceptable health.
Journaling is for me both a means of expression, and a way to work things out. And this comes importantly now in light of my Parkinson’s condition which I, too, sense is progressing in intensity.
Caveat: When my father was in the dying process from his cancer condition, I recall calling my sisters who lived out of state to forewarn them of his imminent death so that they could come home before he died if they wished, or could. He didn’t die just then, he hung on for several months. When my mother was in a similar condition, I was more restrained but still premature.
Now, first and foremost, I find the prevalence and intensity of the tremors is increasing, as is the realization that this disease is both incurable and progressive. There’s no going back, no getting better. Additionally, my gait is becoming more wobbly, and even my walk about the house or wherever I am is becoming more “wooden”, more shuffling. A bit more drooling. Also I am aware that the tremor now seems to be pervading my inner body as well; it makes me feel as though I’m shaking with cold or excitement, which I am not. And, I think, I’m getting more bothered by what I describe as my “gyroscope being off kilt”; a balance issue. Finally, for the past couple of weeks I’ve noticed what I think of as slight pressure headaches that come and go. In addition to the conditions of PD, my arthritis is not getting any less; I’m feeling those aches evermore, and my muscles seem to get sore and exhausted more easily.
I do continue my workout routine -my regimen- at the “Y” with a persistent vigor, and I am looking forward to better weather for biking. When I bike, it is my plan now to go on somewhat longer excursions about the city with my cameras. And, of course, there is the gardening to anticipate. (This year I am going to try once again to grow Canna; the trick is saving their tubers over the Winter, but I now have a plan for that.)
I just learned a few minutes ago by a call from ParkNicollet Dermatology clinic that the mole that was extracted from my back on the 14th and sent for testing has been determined to be benign.
13; 3/20 Wednesday evening (8:30pm) Home.
Fleeting incidents of headaches and pressure again today. But a good workout at the Y left me feeling reinvigorated. On the issue of balance/gyro, it occurred to me today that it seems as if the gyro itself in my head is off-kilt, loose or wobbly.
13; 3/22 Friday morning (7:15am) Home.
And then, just like that, this morning I feel great. Wouldn’t know there was any condition ‘cept for a bit of arthritis. I woke at 5:30a.m. knowing I wouldn’t get back to sleep, so I rose feeling refreshed. And, I woke with anticipation that the weather today is forecast to rise above 32 and stay there for a string of days. Well, here’s to a good day.
13; 3/23 Saturday morning (9:15) Home.
Just to note quickly that a few days ago, as I sat in my reading chair, I noticed a muscle twitch. Then again last evening I noticed it again, but what came to mind was that its a spasm, and then I realized that I was sitting watching TV and that I had noticed it several times recently but not paid attention to it. But what brought it to mind worth mentioning here, is that its only been in right m. tricipitis brachii (or maybe the bicep).
13; 4/1 Monday morning (9:50) Home.
On Friday the 29th, when I had my most recent medical/study review, I felt especially good, and felt the same a day later on Saturday. But yesterday (Easter) and last night were a different story. By the time I crawled into bed shortly after 9pm I could just as well have been dieing -and felt better. The day began at 5am as I got ready, then took, Paul; and his family to the airport at 5:45 for their flight to Washington, DC. When I returned I hurriedly showered to be ready for 7am Sunrise Services Mass. Following that I launched into making my breakfast (Anna had not wanted pancakes as would be usual, and so made her own), followed by quiet comfort with coffee and the newspaper. There seemed no need for lunch, but I did have a carrot and half a peanut butter sandwich. Then, just after 1pm, I realised that I had forgotten to take my two morning pills. After some deliberation about the matter with Anna, I determined that I could -and did- take them then. It was sometime after that, that I began to feel a bit extra wobbly and off-kilt; the gyro was off again. I did bike (to get some exercise and air) to Paul’s house to put out his trash bin. After that came a pork roast dinner followed by two servings of tiara masu. No alcohol then or Friday; one beer on Saturday night. Then came bedtime and what seemed like a full night of dreaming -me, who never notices dreams. And the theme was a confusion of medications, one that would surely lead to suicide. My conclusion is that it was all a result of some combination medication being taken late, and too much food. This morning -back on schedule, and with a lighter diet in mind for the day (and a workout this afternoon)- I feel fine again.
