Paul D Lefebvre
Forum Replies Created
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Toni and Allie, Thank you so much for your insightful articulation of this problem. I commend you both for the way you have dealt with it; and you will probably have to from time to time. ~ I too experience this problem, mostly from our eldest son. I know he means well, and is trying to be sure I’m included and not neglected. But I’m conscious of how often I’ve had to decline his offers (he’s a very good cook and likes -like his mother- to feed people). But Allie, I’ve had the same notion about being dopamine depleted, and that that is difficult for others to comprehend. Our other four children seem to allow me more space, and that is true of our adult friends as well, though some of them are pretty quick to offer suggestions about what I may enjoy. But they usually don’t persist. ~ I am a natural-born introvert so I am also (cautiously) making the best of this social isolation we are finding ourselves in; it allows me time to recoup somewhat. Thank you both for starting this conversation.
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Tina, Thank You for sharing your experience here on this forum, as it’s one more story that puts PD in perspective and helps some of us see the condition in a new light. Your description of internal tremors was good for me to hear; I most often include internal tremors when talking about PD, but I’m not aware of hearing others talk about such tremors.
Your writing at length so cohesively articulates the condition well. You could be called the Metaphor Queen with your descriptiveness. It’s impressive that you can write at such length. Your side story of other affliction is what helps put your PD struggle in perspective.
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Caroline, Russell and others, Thanks for continuing this conversation focused on trying to get the meds and dosage right. It does indeed seem like an endless guessing game, but a game the symptoms compel us to undertake. My immediate hope is that discussions such as this will help us better resolve our individual conditions. Maybe for the longer term it will help researchers come up with better, more effective, treatments.
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Garrett, it was good to see your question here as I have been considering something similar. I was diagnosed 7.5 years ago in Aug 2012; it has taken met all this time to get to this question (and I’m really not there yet). I take two tabs (100/25 Sinemet) at 6am, 2 tabs at 9am, 1&1/2 at 12:30pm, 1&1/2 at 4:30 pm; none after that til morning at 6am. I go to bed at 9pm, sleep well til midnight, then sleep very poorly -if at all- til getting up at 4:45am to prep for my 6am meds. I recently think I have begun to notice some tremor in the night time and that brought me to think about C/L-CR. I also have plenty of anxiety in the night to keep me awake. But my concern is that I have read -and I think my neuro said- that carbadopa/levadopa promotes dyskinesia and eventually becomes inefficacious. I’d hate to lose whatever benefit I still get from the Sinemet. But if it is tremors disrupting my sleep, and if C/L-CR would alleviate that, I’d sure like to get better sleep. So I’m in a quandary about adding on more medication. I suppose I should have a visit with the neuro and try to get a more definite suggestion.
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Symptoms of bradykinesia (not known to me as that at the time) got my attention on the racquetball court (a playing opponent thought it peculiar that I didn’t respond to the ball coming at me) and prompted me to get an assessment with the neurology dept of my health care clinic. It was at that assessment that my tremor was spotted and identified as such, and from that time it has grown in prominence. But even now, seven years later, there are lots of times when I don’t have it. When I go into an “off” period I definitely have a tremor, and it shows.
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Hi Jean. No, I don’t believe my symptoms worsen with the cold weather (its very cold here today and tomorrow). The progression of my symptoms is something that frustrates me; some days I think there is progression in one symptom or another, but then I really don’t know. It’s only by focusing on my condition over time that I can see those symptoms worsen.
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Hi Everyone, My life long (76 years) home is Minneapolis, Minnesota. I spent about 8 years away while in the Navy (met and married my wife in Derry, Ireland).
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Yes, yet another voice to the foot problem. I was diagnosed with PD in August 2012. I can’t recall when my foot neuropathy became a problem, but it seems to me it has been since the diagnosis and it is my sense that it is becoming progressively more intense. I do not claim this problem as painful; more as a nuisance. I have the constant sensation that the sole of my foot is made of thin leather or strong paper, but when I check it, it’s quite smooth. I believe I get more comfort being without socks. I also get the sensation that my shoe has a lot of sand in it, but no, it’s empty. This neuropathy affects both feet, but is most intense in the right one (my PD is mostly on my right side.) ~ Whether or not this is a symptom of PD I don’t know, but when I have occasion to consider my PD symptoms I just lump this one in with the rest. ~ It will probably not be a surprise to hear that I also experience dystonia with that right foot; this is much more of a nuisance, and more painful than the neuropathy. Because of my concern for the possibility of side effects I am not seeking medication for these two conditions; I’ll just continue with Sinemet for as long as that is effective.
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The research trials report found in Parkinson’s News Today makes this vaccine an interesting prospect for at least stopping the PD progression. Like the prospects for gut microbiome treatment, stopping PD progression would be very welcome. ~~ As for trying it, I would seriously consider it if it came as trial to my local PD clinic.
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This is an interesting -on gut metabolites- theory and seems a positive possibility toward at least halting PD progression. Even if it would not produce a cure, stopping the progression would be very welcome.
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In addition to my complaints of bothersome PD symptoms as I wrote above, there is one insidious effect that really bugs me: my focus on myself. It’s a good thing when I have others around to distract my focus.
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In retrospect my symptoms began in the summer of 2006. Eventually, the impact on my movement ability, as well as the increase in tremors and the change in my handwriting, moved my to get an evaluation and I was diagnosed in August 2012. I began immediately to read what I could find on the disease, and that included several writings that talked about the growing ineffectiveness and adverse effects of levodopa/carbidopa over time. So I resisted medication. But after 18 months, I realized that especially the tremors were becoming unbearable. I went in for another evaluation and came away with a Rx for Sinemet. I have had one increase in the dosage, and am now at 7 pills/day.
I only know the risk of Sinemet from what I’ve read; I don’t believe it has yet had an adverse effect on me. On the contrary, I do know that my symptomatic tremors (internal and external) seem to respond well to the medication. I supplement the medication with physical activity (forcing myself to move) at the gym (YMCA), bike riding and outdoor chores (cutting the grass, shovelling snow, etc).
Despite the positive response to medication, I do sense the predictable progression of the disease.
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I think the answer to this question depends on: 1) what you think the cause of PD is, and, 2) one’s cynicism, and, 3) one’s economic theory.
Given how complicated is the question of cause, I believe it may easily -if ever- be more than ten years before that question is answered. And it seems likely to me that PD is one of those conditions that cannot be “cured”. Ever.
As for cynicism, our experience with the Big Pharma shows us that humankind needs law and order leverage   -dependent societal support- to get Pharma to do the right thing.
The economic theory in place now supports the owner making as much money as they can; buyer beware.
It would be quite a political battle to off-set the cynicism, much less the economic order.
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Jean, you seem to be very intentional about dealing with your most bothersome symptoms. I guess the combination of the symptoms against the demand realities of our lives, dictates that we be intentional; no more taking life for granted.
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In Minneapolis the winter has begun with just a few flurries of snow, but it is cold! I’m old enough to not have to like winter weather anymore, and I don’t. But I know Minnesota is my home and here I’ll stay. Our other three seasons are nice enough to compensate for the winter. What has me worried is that the past two winters I’ve been more and more restricted in the outside work I can do: shoveling snow. That’s become a job we now have to hire out.
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Ally, Thanks for asking. My symptoms are not getting better, and, indeed, seem to be ganging up on me. I just told my wife this morning, ‘I’m fed-up with this condition’; I’m ready for it to be done. Knowing what I think I do about this disease, I know that it “being done” is not a prospect. I have not changed my perspective on the issue of focus on myself; it’s really tiresome, and results in nothing positive. In the meantime, if you also have PD I wish you well.
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Greetings Greg. Bravo! to you. It sounds as though you have just continued to be active doing the things you like. That annoyance with the tremor’s affect on the throttle control reminds me that I experience a similar situation: my right foot is subject to dyskinesia and often enough when I’m driving the car will lurch from my footwork on the gas pedal. ~~ I don’t have any experience with DBS and have thought that I won’t consider it, for now. Good luck with that; I hope it woks out well for you.
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That “I am no longer the athlete I used to be” is a very difficult admission, even -or, especially- to our self. It dissolves some of the glue of pride that held us together over years of living and aging. Even if a person was never an athlete, to say “I cannot do the things I used to do; things that made me Me, showed my accomplishment”, is a bummer of one’s pride of Self. ~~ But you’re right, Jean, we do need to be flexible and remember those bits of glue, of pride, were inculcated in us at a time when they fit the Self. PD working its way in upon us really creates a whole other Self, and we need to find (be flexible) other ways of being that support our value. ~~ At least that’s what I think.
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I have read similar about intensity and frequency, and I get the same results you do. My working theory now is that I will work hard enough to get a good sweat to ensure I’ve pumped some new oxygen through my body, and then be done.
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You’re right, thee are a lot of potential meds coming to market it seems, or at least coming in to research. They all have the “may …” caveat.
I have pretty much decided that I will stick with tried-and-true Sinemet as long as it works. I would weigh carefully recommendations from the neurologist I see. As for a pursuit of other medications, I am open to clinical trial studies that might be suggested by MJFox, or the Parkinson’s clinic I attend.
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Yes. I often wonder about the value of exercise, for instance, especially when it leaves me depleted. But then I wonder -both out loud, and to myself- ‘what would I be like without it’? ~~ It’s good to hear that you are not now bothered by internal tremors. That’s a relief whatever the cause.
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My most bothersome PD symptoms seem to be a combination of symptoms that I experience all together, or at times, separately. They include: imbalance, tremor, physical weakness, slowness of movement, slowness of thought, altogether wrapped up in apathy. This combination comes on when I am about to undertake an activity, especially one that I have resisted.
If I can proceed on to whatever the project is, the apathy usually melts away. But the condition of this combination makes me slow and awkward, and challenges my endurance. The quality of my work is compromised, and completion is not guaranteed.  Just before sitting down to this question, I completed vacuuming the house, one of my responsibilities. I did it with little trouble. But I don’t mind that chore. Sitting down this question, I was looking forward to it, so I am only bothered by slowness. But if the project is stressful, when I finish, I often feel depleted, unbalanced, tremoring and brain-locked.
In order to begin a project in this resisting condition, I find it necessary to explicitly tell myself ahead of time that I’m going to do it, and then bite the bullet, and go at it.
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This may be a time in my life when better discipline would serve me well; help me to let certain routines go. But I also know that I am an entrenched INTP personality (in the Myers-Briggs system), and that my routines serve to support my openness to options (some say, procrastination) which, in turn, seems to preclude discipline of the sort that would get me going. But I do have a strong desire to overcome the apathy.
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No, I no longer play racquetball. I did try twice within about 18 months – 2 years after the diagnosis. I was a complete bumbler on the court, and had such pain later, that I have not returned. ~Â For me, the thing that separated PD from aging as racquetball hinderance (no pun intended), is that several of the group members were almost as old as me, and most are still playing. Quality is relative to the group as long as the group stays together. For me, camaraderie and the game were what I enjoyed, and miss the most.