PD and Loneliness

[Alock2020]

I've found that I'm much more isolated since I was diagnosed with PD. It limits my ability to get out and socialize, and possibly also makes me less attractive (stuttering, tremors, etc.). Does anyone else have this problem?

[ParkyVee]

Hi. Unfortunately, I feel this too. I’ve become a hermit because I now move it a snails pace, and my body does weird things and I just don’t generally feel like being out in public or around people because I’m riddled with anxiety about it all and don’t wish anyone to see me drool or see the tremors. It seems to be a very isolating disease. I am going to try to work on this and get out there when I have the energy… Maybe. For me it’s very hard to become motivated to do much of anything lately because I know that I will end up feeling wiped out but I hope that that can change, for both of us.

[gaga1958 in reply to ParkyVee]

there are drugs for drooling. don't let that deter you

[6daniparky]

Also my husband...😪

[jeffmayer]

INever thought I would say this but why don't you try an electric wheel chair it will give you so much more freedom I recently spent 3 weeks in hospital con fined to bed 24 7my back has been wrecked ever since couldnt walk or stand so a neighbour friend of mine who damaged his back said I have2 chairs why don't try one at first I said no way any way enough waffling basically change d my life I. Can even walk my dogs

[Restlessz]

I feel exactly the same but I am trying to go to the leisure centre where I manage to go swimming or walk in the pool as it's not too deep and it's a way of meeting people and socialising as I live alone and it improves my mood and generally I feel better for the exercise I've managed to do.Hope you find some activity to suit you and best wishes for the future.

[ForViolet in reply to Restlessz]

Yes, my HwD gets to socialize a little when he takes his early morning walk. He also has a big email list and keeps up with people that way. He doesn't go out much.

He visited (walking on street) another man recently who drooled when he talked. So, HwD told me the guy prob has Parkinson's. Often it's hard to understand what husband is saying because of the saliva. But he's one to not be embarrassed. He stays friendly.

[gaga1958 in reply to ForViolet]

there are drugs for drooling if he desires to take them

[ForViolet in reply to gaga1958]

I don't know if that stranger is interested in drugs for his drool.

Side effects would concern me. My husband's drool has diminished with thiamine.

[Lionore]

I’m in the same boat. I never know how I’m going on feel so it’s hard to commit to social events. I try to plan outings in the morning when my dopamine is high. I also avoid driving except locally. Starting PT again because my neck flexibility is compromised.

[pearlette]

try and choose a simle event where you have atleast 1 good friend prepared to come with you. When you get there be prepared to explain to anyone looking starngely at you (however polite and covert they are)

You will become a person whose courage they admire rather than that odd person ! I even had someone younger man fall in love with me. Sadly it did not last because I found he could not keep up with my energy levels.

I have somehow managed to continue to work. As a doctor , I dont hide my disability from my patients.

But I do remember avoiding going to sit down meals as the table height and compact spaces and soft seats that you sink into amking it very difficult to use cutlery.

The more I do the easier it becomes

[Marcia123]

I was not invited to my goddaughter’s wedding because of my Parkinson’s

[gaga1958 in reply to Marcia123]

that just plain ole sucks! I would be truly offended. So sorry that happened to you.

[ForViolet in reply to Marcia123]

Very weird on her part.

[eschneid in reply to Marcia123]

That is so wrong on their part. They should be ashamed. No gift!

[kaypeeoh]

Since the diagnosis I've lost my career, and my home and had to move 1000 miles. Now I don't like where I live and I don't know anyone here. I think depression has a lot to do with it. Once a week I go to a Tai Chi class. I'm planning to join a gym. My only advice is to look for group activities. Make that first step and see what happens. My doctor set up Tai Chi class for PD victims. The YMCA has step classes and spinning and dance classes and even volunteer trainers who understand PD and can help to help keep you motivated.

[BeedieBird]

Try to find a rock steady class or another PD exercise class if you can. It helps you to get out and you work out with others who are in the same or similar boat. I feel a social connection to everyone in my exercise class. If you can't go in person, try an online 'live' class where you can interact with others. Hang in there and don't give up!

[Sydney75]

This is common in chronic illness for both the patient and caregiver. Can you join a support group in your area? If you have decent mobility there are exercise groups for PD folks. I agree w/ the poster on the wheelchair, it is a big jump for many but gives back freedom. A good friend's husband has a type muscular dsytropy, most of his uncles were in wheelchairs (so he knew it was inevitable), yet he will not make the transition. His wife said he can't see the freedom he would have, would rather use two canes and stay home. Then covid came along and gave him more excuses to stay home. Wife plays tennis 4 days a week its her release.

Social engagement is important for our mental health, even if you do it online or take an online class. Many have anxiety about how they appear in public, with all the strange things I see today (walking around) remember we are just a blip in their memory.

[eschneid]

Join Marc's weekly Zoom with other shaky, drooling, twisting PD'ers-at least you'll have some contact with people..

[Jmellano]

alock2020, you r not alone, my bradykinesia, walking into things and dropping stuff, drooling, speech slurring and urge incontinence have all contributed to my isolation. Add that to anxiety and depression to get a formula for self isolation