Do you feel that Parkinson’s is a lonely disease?Posted by mary-beth-skylis on August 21, 2023 at 12:37 pm
One of the challenging things about living with a disease like Parkinson’s is that it can be a lonely experience. Or you might have to explain yourself and the choices that you make.
Do you feel that Parkinson’s is a lonely disease?
MemberAugust 22, 2023 at 2:19 pm
I think many people think of Parkinson’s as “that disease where people’s hands shake and their limbs jerk;” they have no knowledge of symptoms such as anxiety, apathy, exhaustion, etc., which often cause more suffering than a trembling hand. My worst symptom is zero energy, and that’s not what people think of when they hear that you have Parkinson’s.
MemberAugust 29, 2023 at 11:11 am
I used to call it a fatigue attack but a better description is exhaustion. After I wake up I have about 2 normal hours. Then the fatigue hits and I feel like crap the rest of the day. At least I have a condition that sleep helps – can only think that’s lucky.
MemberAugust 22, 2023 at 7:35 pm
I was diagnosed in early 2020. I fortunately had recently retired and began volunteering as a local deejay. As a new arrival I didn’t have a preset crowd and I did have some family issues I wasn’t aware of. I know people and have made friends, I also have some conflicts that make more angravating. All in all, my own pd is mostly tolerable even as my mobility diminishes. I isolate myself some but all in all ive made my way using his friends and Parkinson’s volunteers and support groups. I’m not sure how classic my case is. Every PD case is different and we always have to cope with life’s challenges whatever they may be.
MemberAugust 22, 2023 at 11:15 pm
YES! To nearly everyone outside of our household I am perfectly normal, except that I fly into rants once in a while. I used to have a pretty good filter, now my wife has that job —when she is around. But nobody else ever sees me when the meds are off. They have no clue that it takes five minutes to get out of bed in the morning (in fact, even the Occupational Therapist at the PD clinic couldn’t grasp that one) or why I will suddenly jump up and leave a meeting on a race to the bathroom (speed walking because I can no longer run). Or why I am so slow at everything I do. Even I struggle with that one — I still estimate jobs as I would have in the pre-PD days — and instead of being low by a factor of three I am off by a factor of ten. People at church wonder why I never volunteer to set up chairs or help someone move anymore. BECAUSE I LOOK SO DA## NORMAL!!
Nobody, not even my wife, knows what I am going through, but she is as well informed as I can persuade her to be. It’s not the big stuff, it’s not fear of dying — it’s the little things— brushing my teeth in the morning, getting dressed, driving and constantly having to remember that I do not judge distance or speed of approaching cars well, dealing with constipation, forcing myself to walk normally when my brain is saying “it’s okay to shuffle, nobody will notice you dragging your foot, you don’t have to hide that tremor… .”
And all that time other people are thinking “What is wrong with that guy.” When I get a chance to explain, the usual response is “I never would have known,” and they wouldn’t have known because to them PD is an old man with a tremor, and I am not old enough, yet.
MemberAugust 31, 2023 at 7:19 pm
I can totally relate to your reply. You definitely feel alone because no one really gets what you’re going through, especially for non motor symptoms. My meds used to control most of my symptoms fairly well, however, recently I seem to have more off time when my legs just won’t walk the way they should (yes they seem to say it’s okay to shuffle) and the hot flashes and muscle aches start in again. The back pain is the worst. I’ve tried so many things to alleviate it and your friends try to give you advice, but they just don’t get that the root cause is something that can’t be fixed. The fatigue is bad in the afternoon, and my husband gets annoyed with me when I nap but he just doesn’t get it. I still work full-time as an elementary school teacher, and before my symptoms got bad I was also a part time fitness instructor for over 30 years. (Now the 6000+ steps I get during my school day is all I can handle for exercise). I don’t look like I have a disease, except when the meds start wearing off and then I worry that people will think I’m drunk or wonder why I don’t stand up straight. I’ve always been the one taking care of everyone else, and I just hope that if I stay active it will help me do my normal activities for as long as possible. I could go on forever but I know those of you reading this understand.
MemberAugust 23, 2023 at 1:14 pm
Yes I feel it is a lonely disease because you can never come out and admit it to someone unless you are aware that they may have it too. When I was first diagnosed, I tried to reach out to others so we cud connect but no one is ready to come out and openly admit it…that they have it also. But I have the support of my family and friends and this really helps. Thank goodness, we have places like this one where we can express ourselves.
MemberAugust 23, 2023 at 9:32 pm
Yip — I guess if I’m honest I’d have to say it has been somewhat a lonely existence for me (and if it wasn’t for my whanau and my spouse I’d likely end up a hermit).
It difficult for me to answer this excellent question precisely. As a Spectrumite, friendships have always been a challenge. I’ve been a certain type of recluse most of my life. Furthermore, as a therapist in small Aussie / NZ communities over the past 18 years (I’ve since retired), keeping clients separate from friendship came with it’s own special challenges. I’ve known many business acquaintances during my lifetime. But since my PD diagnosis, maintaining connections even with casual acquaintances holds it’s own set of hurdles.
There aren’t many support groups in New Plymouth. The Parkinson’s Nurse (employed by our local Health Board) tries her best to hold occasional hui, with the intent of bringing all the local Parkies together. But I’ve yet to connect with many — only one person has extended a hand of friendship — since attending these local events.
MemberAugust 29, 2023 at 3:01 pm
Yes. All the responses here ring true. People don’t know/can’t see all that’s happening and how horrible I feel on the inside or what I look like when meds aren’t working. Remaining positive while persevering through it all is full time work.
MemberAugust 29, 2023 at 3:22 pm
Yes, I went to one “supposedly” Neurologist who told me he had to read a book on Parkinson‘s and then told me on my next visit I should see his PA. I have learned to explain my tremors before we go out with people.
I have learned one has to ask their neurologist about some conditions that are occurring such as dry eye , dizzeyness , sleeping during the day instead of night, drinking a glass of wine, as they act like they haven’t heard of the problem.
MemberAugust 29, 2023 at 6:23 pm
YES!!!!! While it is my wife who has been diagnosed with it, it is both of us who live with it. Even trying to explain what we go through together here feels lonely. We have friends who know but are loosing them one by one because they are afraid of what it means (can’t explain that). And more and more we just stay home, by ourselves.
MemberAugust 30, 2023 at 1:47 am
Yes you can’t explain your disease process to someone who doesn’t have PD. They don’t understand how you can switch from one personality to another without cause. I have had many friends and family tell me that I don’t look like I have PD. What does PD look like? The only commonality between Parkies is we all look different, everything else is different among us all.
MemberAugust 31, 2023 at 7:34 am
Definitely a lonely journey. All my friends and family know I have PD. When they see me, everyone says “Gee you look well”. Of course I always say “yes I’m doing well. I work at it.” They have no idea how much work goes into trying to manage medications, when you can eat, when you can’t eat, the very many ‘off’ days where I sit home too exhausted to do anything, the constipation and incontinence management, the concentration required just to try to walk normally, exercises to keep the muscles flexible and thinking with a brain that works like a slow internet connection etc etc. It is no good trying to explain all this and I’m sure they don’t want to hear it. So yes it is a lonely journey.
MemberAugust 31, 2023 at 9:29 am
It certainly can be but with the advent of the internet people and advice become so much more accessible. I was diagnosed in 1975 and went well over 20 years without knowing anyone else with Parkinson’s even existed let alone someone as young as I was.
One problem is the perception and impact we think our condition has on others and as consequence the embarrassment and sadly shame people feel when out in public .
Never ever be embarrassed about being authentically you in public and never be ashamed to ask for or accept help from complete strangers. It’s a win-win for everyone. People get an enormous sense of well-being helping others and we get the help we need (:)
MemberAugust 31, 2023 at 11:01 am
I take care of my 86 year old mother who was diagnosed with a form of Parkinsonism. They can’t seem to tell us which one. She worked up until COVID when she was sent home no thus it all began. People can’t seem to see the drastic changes with the balance, anxiety, depression, apathy, tiredness, shuffling and major dystonia, etc. My husband and I take care of her and she lives with us. Only a few (maybe 3) grandkids come to see her. They expect her to be the same but at 86 I can’t tell the difference with the age or the disease. She absolutely doesn’t want to go ANYWHERE, so that means we don’t go anywhere either. It is a very lonely disease and depressing.
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