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A MyParkinsonsTeam Member asked a question 💭
Stendal, IN

How can I explain to my husband there are days when I just don't feel good. I am shaky inside, just want to lay in my recliner with my eyes closed and not do anything. He wants to go out to eat. He does not drive and I would be the one driving and I just am not feeling like going out. Since Parkinson has so many different affects on everyone he feels that I should be showing some symptoms like the tremors which are controlled with the meds. Thanks for letting me vent. One of those days when I… read more

July 11
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Answer Summary

Members came together around the question of how to explain 'invisible' Parkinson's symptoms to a spouse, with many sharing that fatigue,... Read more

Members came together around the question of how to explain 'invisible' Parkinson's symptoms to a spouse, with many sharing that fatigue, inner shakiness, and low energy are very real non-motor symptoms that others cannot always see. Several members offered helpful strategies, including researching B vitamins, trying antidepressants for apathy, managing stress through nature walks and the Serenity Prayer, and following Parkinson's influencers online for support and communication tips. A recurring theme was the emotional weight of feeling misunderstood by loved ones, paired with deep community solidarity and encouragement to rest without guilt.

A MyParkinsonsTeam Member

Beautiful post. On my way to a doctor appt, I watched the sun coming up. I felt blessed that I could see it!!!

We all need to rest. I've noticed if I'm busy one day, I'm worthless. Do what you have to, to have better days. For me. It's being in nature.

July 14
A MyParkinsonsTeam Member

This situation troubled me for years as I could not find a relationship between what I did the day before and why I was tired. I have had PD since 2021 and researched an amazing amount.
I found I could work 1 hour in the garden 8:00-9:00am and later misc work in house for 2 hours and no problems. Then I read about the worse thing for Parkinson's is
STRESS.
This does not mean after a calamity but after a series of small stressful things. I cannot find what I am looking for and after an hour a minor stress, my wife reviews all that is wrong with politics and I find myself stressed these all add up. Something very little like playing cards for 3 hours will make me need a nap.
What drives me crazy is when other people say you are stressing for no reason.
AHH This is both aggravating and adds more stress.
I try to focus on the Serenity Prayer
The Serenity Prayer

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

This and a good nap everyday not for the rest but for a chance to destress

Wishing you all the peace we deserve

July 14
A MyParkinsonsTeam Member

Hi Cheryl I know exactly what you are talking about when someone doesn't see the tremor O they think you are fine people do not understand what we go through with parkinsons and we a can tell them umpteen times and it still goes back to the tremor Like for instance I have no tremor all day and when I go shopping or go out socialising meet people they say O you look great and here it is (You would never know you have parkinson )now if I had a penny for everytime I here that I'd be a rich woman So Cheryl you are not alone you have me venting aswell !! PS As I said I don't have the tremor all day I get like a spasm down my feft side at night same time every night you could set your watch by it and I get the tremor inside my body and when the medication is wearing off I get pains in my legs stiffness cramps and so on So Cheryl that's my story and the end of my vent for today If anyone would like to ask me a question on it I will answer no problem at all you are all very welcome.All the best
Therese Byrne ☘️ 🇮🇪

July 12
A MyParkinsonsTeam Member

Well, let him know from me that this is a very real non-motor symptom!! It is soo debilitating somedays eating and/or personal hygiene is just too much effort and this leads to another very real non-motor symptom, apathy ... these two non-motor symptoms take time, effort and patience to get a grip-on ... it's taken me every bit of 5 years to sorta control, with vitamins and antidepressants (I didn't have real depression and was not wanting more drugs but it got tragic enough to give in and try them .... took me 4 different ones to find my match, we're all different and wellbutrin was my magic pill)!!!
You need to remind yourself, like I do, this PD and the meds that go with it are very taxing on our bodies ... it devours most the vitamins, minerals and nutrients out of bodies, leaving us literally "Tapped-Out"!!!
So with that said, the fatigue busting vitamins you need to research are Bs: B1 (big helper), B6 (PD robs your body of this fast) and B12 (universal energy vitamin) ... this is by no means a complete list and of course you never take our advice, you research and consult with your medical team!!!
Last piece of advice would be to follow PD influencers on socials, they make us feel not soo alone by having issues like this in common and some give great advice, quick list: ParkDoc, an actual neurologist which has awesome advice on all things PD; Ester "shakinginmyboots", early onset PD that worked in medical industry with a pharmacist husband, she just keeps it real with all symptoms, motor or non-motor and all the meds related to the issues; and a professional, high maintenance lady that discusses fatigue and social life often, I'm gonna look her name up then edit if I find it but until then her last name is Parkhurst and gives great conversational advice to communicate to loved ones, friends, colleagues, etc...
Take care and best wishes!!!

July 11
MyParkinsonsTeam

Venting is absolutely welcome — and what you're describing is so real and so valid. Parkinson's is much more than what people can see from the outside, and that can make it genuinely hard for loved ones to understand.

One of the trickiest parts of Parkinson's is that symptoms vary so much from person to person and even day Show Full Answer

Venting is absolutely welcome — and what you're describing is so real and so valid. Parkinson's is much more than what people can see from the outside, and that can make it genuinely hard for loved ones to understand.

One of the trickiest parts of Parkinson's is that symptoms vary so much from person to person and even day to day. As one MyParkinsonsTeam member put it, "Every day is unpredictable as far as what symptoms I'll get and the intensity of them." Internal shakiness, exhaustion, and that "I just can't" feeling are very real Parkinson's symptoms — they just aren't always visible. Fatigue with Parkinson's can feel like an extreme exhaustion that makes even simple movement feel impossible, and it can hit hard even on days when tremors are well controlled by medication.

Here are some ways to help your husband understand:

- Use "I" statements — "I feel completely drained today and I'm not safe to drive" is clear and honest without needing to justify yourself
- Explain the invisible symptoms — internal tremors, fatigue, and low energy are real Parkinson's symptoms even when nothing shows on the outside
- Remind him symptoms shift daily — a good day yesterday doesn't guarantee a good day today
- Suggest an alternative — maybe offer to order in together instead, so he still feels included Rest when your body asks for it. Tomorrow really can be better — and listening to your body today helps make that possible. 💛

July 11

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