Page 3 | •sensitive• Does anyone have Parkinson’s?

ninjahamster · 2025-10-24T21:21:17+00:00

And can you tell me your early symptoms please?

OhDear111 · 21/11/2025 08:07

Yes. In uk! No one really knows how bad services are until you experience it! However I do think people need to consider spending their own money. My DM had to pay for her care in her home as she had savings. Our friends should be doing the same but don’t want to and they have a lot more money!

IbizaToTheNorfolkBroads · 21/11/2025 08:14

DDad’s was the tremor, highly noticeable because he was a model maker.

Pennina · 21/11/2025 08:47

My DH has Parkinson’s - early 60s. Initial symptoms: hand tremor that had worsened to the point it couldn’t be ignored any longer, loss of arm swing one side, some blankness of expression, fatigue, cramps, bad tempered (probably due to all the above poor sod!), bit shuffly when tired. But medication helping and he is getting on with his life and not stopping doing things. He has remained stable for last 18 months.

BunnyRuddington · 21/11/2025 18:34

Pennina · 21/11/2025 08:47

My DH has Parkinson’s - early 60s. Initial symptoms: hand tremor that had worsened to the point it couldn’t be ignored any longer, loss of arm swing one side, some blankness of expression, fatigue, cramps, bad tempered (probably due to all the above poor sod!), bit shuffly when tired. But medication helping and he is getting on with his life and not stopping doing things. He has remained stable for last 18 months.

I’m glad he’s been stable for so long. Ive saud this before, so you’ve probably seen it already but do look at the BeechBand.

BeechBand | Parkinson’s UK Tech Guide

A wearable device that uses vibrations to help reduce anxiety along with other motor and non-motor Parkinson's symptoms.

https://techguide.parkinsons.org.uk/catalogue/beech-band

BunnyRuddington · 21/11/2025 18:35

OhDear111 · 21/11/2025 08:04

@BunnyRuddington Thanks for your response. They have just rented a stair lift and purchased a wheelchair. So some improvements made. Appointment with Parkinson’s Nurse - April 2026. That’s ridiculous in my view. Sleep apnea is now a huge issue and nights are disturbed for many reasons. Our friend is falling asleep all the time - in the middle of meals.

I’ve suggested contacting the local Parkinson’s Charity but there’s a huge reluctance to do this. No idea why. They also have plenty of money so could afford help in the home. At least with getting up and washing. They won’t spend what they need to. We don’t understand this either.

No one has assessed their home. They are currently trying to assess this but way too late!

GP is taking more bloods for analysis but the NHS is very disjointed when there’s multiple things wrong. Friends wife says nhs records aren’t updated so each dr doesn’t know full picture. Everything has to be repeated. Our friends are staunch supporters of the nhs but now feel very let down. Access to services seems limited to those without careers living with them in their view.

Some of the earlier posters queried if the poster listing a long list of symptoms had Parkinson’s. Many issues on the list ARE associated with Parkinson’s. Not everyone gets all of them but the list isn’t wrong or necessarily suggesting something else.

I think inertia is fairly common with Parkinson’s though? Hard to cope wiyh but they literally don’t seem capable of improving the situation for themselves

OhDear111 · 21/11/2025 19:02

@BunnyRuddington They are both huge believers in the nhs but haven’t realized it’s changed. They’ve had issues with Diabetes and medication too. I was amazed diabetes nurse did not refer for dementia/parkinsons - after they returned to face to face. Remote was a huge disaster! Anyway, this sorry story will be continued - sadly.

AstonUniversityPotholeDepartment · 21/11/2025 19:54

OhDear111

When you say your friend is using a bottle, I hope you mean he has bought or been supplied with a proper urinary bottle?
https://www.mobilityworld.co.uk/products/homecraft-urine-bottles-male

Has he been referred to the sleep clinic about his sleep apnea?

Homecraft Urine Bottles - Male - Mobility World UK

Integral handles and heat sterilisation come standard with both Homecraft Urine Bottles for men, ensuring safe waste disposal. A low-spill adaptor is - Mobility World UK

https://www.mobilityworld.co.uk/products/homecraft-urine-bottles-male

CakeFace1234 · 21/11/2025 20:18

Relative - tremor, less expressive face, loss of smell, vivid dreams, stoop.

Not heard of the Beechband. For those how know about this, does this help with tremor or is it more for mood.

BunnyRuddington · 21/11/2025 22:37

CakeFace1234 · 21/11/2025 20:18

Relative - tremor, less expressive face, loss of smell, vivid dreams, stoop.

Not heard of the Beechband. For those how know about this, does this help with tremor or is it more for mood.

We saw DBIL last weekend and hadn’t seen him in a couple of weeks. He seems less tired, more positive, says that his tremors have reduced avd he even seems to have a better colour to his face.

None of the improvements are significant but they are enough for people he knows to comment.

OhDear111 · 23/11/2025 21:18

@AstonUniversityPotholeDepartment There are some things I’m not enquiring into further. No idea what sort of bottle! Yes. I think sleep apnoea is under review.