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What would you like non-Parkinson’s patients to know?
Living with a disease like Parkinson’s can be really tough to describe. Without constant communication, it’s fairly easy to be misunderstood or misinterpreted. I often wonder if there are things that my Dad isn’t telling me about how Parkinson’s is impacting him. What would you like to tell people without Parkinson’s? Are there things that you wish were better understood about the disease?
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15 Replies
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In my case (eopd), the non-motor symptoms (rigidity, nerve pain, fatigue, etc.) are more challenging than the motor symptoms (tremor, balance). It takes so much effort to conjure up energy to tackle any task, laborious or social. When my tremor is noticeable, it doesn’t bother me- I don’t feel embarrassed or awkward. But when my brain wants to get up, tackle the day, have fun with my family or whatever, and my body is saying “nope,” it can be a little disheartening. Instead of becoming frustrated, I’m learning to look at PD as the faithful companion who will never leave my side. I’ll work with whatever it’ll give me, as long as I can maintain my spirit of perseverance for when it’s not giving me much to work with! And that’s where the non-solicited encouragement/flexibility of those around me comes into play.
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Everyday is a guessing game for me. I am never sure that what I want to do will be accomplished. You learn to live with what PD will offer you at a given time. Sometimes it just takes more time. Other times I have lost the skill to perform. Simple things like taking a walk, attaching a lure to my fishing pole. One day I will have no problem with these easy task. The next day, I will have a difficult time. Having PD, you live with unpredictability
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In the past I always felt that I had to defend myself when referring to symptoms of Parkinson’s that were exceptionally challenging… WE HAVE TO REMIND OURSELVES THAT THE DISEASE IS NOT OUR FAULT AND THAT THE SYMPTOMS ARE HAPPENING TO US.
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I completely agree with the three comments above! I think it is very important for others to understand the variability of PD. Each person’s journey is different, and for that one person we focus on, the journey for that person is also extremely variable. One day (or hour!) may be very different from the next. I choose to consider PD my adventure. I never quite know what is in store for me. That can be positive as well as negative; if I am having a bad day, I know that tomorrow may well be wonderful. The non-motor symptoms give me more trouble than the ones that are visible, so I think I would want someone who does not have PD to believe us when we say we can’t do something on any given day, even if we were able to do that yesterday and may again be able to do that tomorrow. I am blessed with family members who understand that, making it much easier for me to take each day as it comes.
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I agree with all of the above placing heavy emphasis on the observation that it just takes longer to do everything and skill-demanding tasks are constantly in a re-learning mode. I may accomplish a task one moment and then have trouble 1hr later doing exactly the same thing. It’s easy to lose any optimistic outlook if tends like these get more frequent and there is a noticeable deterioration. Those around us should be aware of increasing levels of frustration and anxiety precsisely because of the demands we place on ourselves. They also should realize that we are not the same person that we were 3,5 or 10 yrs ago. This is a hard fact for even me to accept especially when my achievement level/ expectations are so high.
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We had some family over this weekend that we haven’t seen since Covid started. My sister-in-law and her husband both saw me sitting and said, “You look fine,” but they didn’t ask me one question about my PD during three days. I wanted to share what is going on. Their children, who are adults, never asked about it either, even though I was walking with my cane slowly and carefully. I would like people who care about me to ask about my PD. Maybe they are afraid to or they don’t know how. I’m not sure if I should start talking about it unless someone asks . . .
But I would tell non-Parkinson’s patients my main motor problem is walking and balance–it started two years before I was diagnosed with PD (last year). Lightheadedness compounded it, but that seems better now, perhaps since taking Carbidopa-levodopa. In the morning after I take my first pill, my speech changes: I have trouble saying multisyllabic words for two hours. This upset me at first because I used to stutter badly as a boy. I also am prone to depression and have found that I can’t tolerate antidepressants. My brain is different now–I can no longer even drink a full beer or glass of wine because it makes my balance/walking much worse. Marsha, a friend in my local PD support group, says we can “learn to work around Parkinson’s.” This has become a mantra for me. I am trying to work around Parkinson’s.
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I apologize for adding a few more thoughts. I like how Marlene frames PD as an adventure. This is positive. For a while I thought I was doomed with PD–but I let that negativity go. I’ve determined that PD is amazingly variable. One man in my support group, who has a tremor in his right hand, bikes 20 miles a day. When I mow the lawn for an hour, I can barely move for the rest of the day; yet I have no tremor. I live on a bay of Lake Michigan but don’t have the energy to kayak–I’m holding out hope I will.
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Such excellent replies. I agree with all of them. I really appreciate Marlene’s reply as I can relate to what she wrote. It’s hard when people don’t understand you can do something one day or one moment and not the next. And a lot of people around me just don’t understand that and/or they seem skeptical, like I’m making it up.
The only thing I’d add is cognitive problems. Mine come and go. One moment I’m fine but it seems if I do too much mental activity (and sometimes not) I suddenly become confused and/or forgetful or I can’t comprehend what I’ve read, etc. When that happens I need complete quiet and to lie down. This is one of the biggest surprises for me so far.
Unpredictability of abilities and symptoms day to day and moment to moment seems to be the most predictable thing about this disease. And I’m having a bad brain day, so I hope this makes sense.
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First, our increasng klutziness (knocking over water glasses, slipping on the pavement, missing the chair on the way down and ending up on the floor, etc.) are not due to carelessness or ignorance, or lack trying to avoid an accident. A PD patient’s brain is just not working at 100%. It takes a miracle of interconnected sensors, brain control centers, eye-body coordinatio, and so on, to walk straight and do other “ordinary” balance tasks, but the information channels between brain and muscles is faulty. Please note that we feel much more humiliated by our own inability to put the dishes in the dishwasher quietly than anyone else who is saying in a scolding voice, “Can’t you be more careful??!!”
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The thing that seems to be on the top of my list lately is memory. I wish people understood that I don’t miss appointments, meetings, commitments, etc. because I don’t care. I just can’t remember them. Writing them down is only a small help. My Alexa keeps reminding me and I still forget. I seem almost “normal” to most people and so they don’t know why I can’t remember. Next on my list is the draining fatigue but I’ll dwell on that another day.
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As others have already said, I’d want non-PD people to know that how we look isn’t necessarily how we feel. I might look “normal” to most non-PD people, and that can be problematic when I’m having trouble speaking and can’t find the right words, or when I can’t remember the name of something or someone or can’t recall how I know them. Memory problems are definitely an issue for me, and while it’s great to be able to look online for the word I can’t think of or other things I can’t recall, I can’t do that when I’m in a one-on-one conversation. I do well for the most part because I stick to a daily routine and schedule. If someone were to take me out of that, I would not do as well. It’s one of the main reasons I don’t travel anymore. Looking at me from the outside, someone probably wouldn’t understand why I don’t travel or do certain other things, but it’s only because of my routine that I still look relatively “normal,” and I’d want non-PD people to understand that.
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If you are living with PD (I am loath to say “suffering from”) you probably recognize the not so subtle suggestion in the responses that the non-motor symptoms of PD are often the most devastating part of being a club member. I still cringe when family members and friends say “…but you look so good.” Yes, I too have motor symptoms, but Sinemet is a formidable ally in the struggle with most of them. For most of the motor symptoms I can tolerate the situation by finding workarounds or thinking my way through a situation (e.g. how to button a shirt) or setting up modest, achievable goals (working in the garden in 15 minute sessions). Since everyone who knows my condition recognizes the characteristic motor issues of PD, I need only do things slowly to indicate the reality. But the sleep disturbances, absence of restorative sleep (Occasionally I need 12 hours of sound sleep only to wake up exhausted), fatigue, brain fog, anxiety, depression, voice changes (which have made me difficult to understand), etc. are far more the thieves of life which are not visible to others. When I am asked how I feel, I respond with my immediate sense but always add the caveat that the non-motor symptoms are the true torture. I then provide a litany of those symptoms. I also add the fact that the social withdrawal which is also a reality of this condition is more due to the non-motor symptoms.
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So true, R. Bonanno, and well stated! I’d also add mood fluctuations, digestive issues, constipation, cognitive problems, and so forth to the mix (my mix, at least). The non-motor challenges are often so much more of a hurdle for us than the visible motor ones.
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<p style=”text-align: left;”>To everyone on this thread: thank you for sharing the challenges you face. The first 7 years since being diagnosed, my symptoms were, for the most part, noticeable only to me. When the tremor in my right foot became a bit pronounced, Sinemet worked magic. For the past year, my symptoms have been gaining me and now I have, at most, a few hours of “normal “ activity before the extreme fatigue, pain and the slight tremor in my right foot is now a jackhammer involving my whole leg. Trying new medications (Nourianz & Rytary) have had no effect. I am fortunate to live in an area with outstanding medical services, but so far, I continue to deteriorate at a rapid pace. Perhaps the next step will be DBS. Any feedback, anyone?</p>
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My reactions are totally different to R Bonanno.
When someone asks me how I am, I actually smile/try to smile depending on the day, and say ” not too badly thanks, how are you feeling?”
I realize that when someone says ‘how are you’ it is just a way of saying hello. They actually may be concerned but it is not their fault or problem that I have PD. It is certainly not my fault but it is my problem, and I really don’t want to burden them with my hassles, that is, not if I want them to remain my friends. I know they care, and that’s what counts.
Clive
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