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Original poster

Parkinson’s- family member at Christmas

21 replies

Tinselunderthetv · 21/12/2023 22:08

I’m hosting a close family member for Christmas, they have been diagnosed with Parkinson’s, I’ve come to realise that I also have this, I’m devastated, scared for my future and that of my DC. I diagnosed them and i was right. Fuck.

OP posts:
Horsemad · 21/12/2023 22:13

I'm sorry to hear your family member has Parkinson's, how do you know for sure you have it?

My Mum had it & it is a worry, wondering if the same will happen to me. 😕

Original poster
Tinselunderthetv · 21/12/2023 22:13

I googled symptoms way before their GP would entertain any discussion, I knew it, I called it, I was right.

i wanted to be wrong with them, I want to be wrong with me but I know that Im not

OP posts:
Horsemad · 21/12/2023 22:16

Are you displaying the same symptoms? My Mum was told there is no definitive test for PD.
Her consultant also told her he had some patients who he'd been seeing for over 20 years & their symptoms had not progressed in that time.
It affects people differently.

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Original poster
Tinselunderthetv · 21/12/2023 22:17

It’s more prevalent in men, 2/3 are men but In Women it’s also a thing.

drooping eye when tired, not able to stand still/stand - early symptoms from before you would know to look

OP posts:
Horsemad · 21/12/2023 22:19

Ah I see. They were not the symptoms my Mum displayed. She had a tremor but that in itself doesn't necessarily mean it's PD. There are lots of causes of tremors, unfortunately.

My Mum's Dad had it & although it isn't meant to be hereditary it does make one wonder. 😕

Original poster
Tinselunderthetv · 21/12/2023 22:19

I’m only 47, I can’t stand for long without shaking. My balance is fucked. My eyesight is awful. I tremor/vibrate in my sleep

OP posts:
Horsemad · 21/12/2023 22:20

What did your family member's consultant say when they were diagnosed?

Horsemad · 21/12/2023 22:20

Hmmm my Mum's tremor used to stop when she slept. That's common, apparently.

Horsemad · 21/12/2023 22:22

Are your core muscles decent? If not, start working on them. Maybe go to the gym, or use a PT if you can? This will help massively with balance.
Keeping mobile is key with PD, imo.

Original poster
Tinselunderthetv · 21/12/2023 22:23

For my relative The consultant is very passive, after first appointment, following diagnosis said that they would leave the door open, left it on them to ask to be seen, I made it happen after I nagged enough following huge deterioration

OP posts:
Crooklodge · 21/12/2023 22:27

The majority of Parkinson's is idiopathic, it's VERY rare to be genetic.

Original poster
Tinselunderthetv · 21/12/2023 22:28

I feel like the consultant for my relative isn’t good but I’m having to take their word for it and relative is passive to a fault/ or suffering apathy due to condition, genuinely think I’m not hearing what the consultant has to say

im scared for my future and that of my DC. I’m starting to be impacted by tremors and balance, I lean on surfaces/walls, hide my hands when talking with friends

OP posts:
Original poster
Tinselunderthetv · 21/12/2023 22:34

it’s not normal for a woman, not yet 50 to be unable to stand still for ten minutes without shakes.

OP posts:
SkaneTos · 21/12/2023 22:37

I am sorry to hear about your diagnosis, OP!
Is there treatment/medication available to you?

Tinkerbyebye · 21/12/2023 22:57

Have you actually been formally diagnosed by a consultant, your op sounds like you have just decided from Dr Google

HelpNeededBeforeIHaveABreakdown · 21/12/2023 23:01

Do your arms swing by your side when you walk? How is your sense of smell?

DyslexicPoster · 21/12/2023 23:01

DaT scan is one test for parkinsons

Maddy70 · 21/12/2023 23:12

If its any consolation. This could be an outing but ...my friend has advanced Parkinson and was very disabled by it. Horrible.

This year he has undergone experimental surgery and his life has completely changed. He is now "normal" in every way. (Albeit he had to "charge" himself up once a week )

He had his treatment in Barcelona.

It's been a miracle. He has his life back.

Original poster
Tinselunderthetv · 22/12/2023 23:24

To respond to some posts;

DaT scan is one tool, there isn’t a definitive test for for Parkinson’s.

Whilst Parkinson’s isn’t genetic if you have a family member with Parkinson’s then you are more likely to have it. It affects men more than women.

I arm swing but I’m military trained so I typically march, my smell is fine but so was my family member smell until 15 years before diagnosis.

OP posts:
Original poster
Tinselunderthetv · 22/12/2023 23:25

Please could I PM about Barcelona treatment? Was it deep brain stimulation?

OP posts:
ADifferentSong · 13/05/2025 18:00

I'm so sorry to hear of your family diagnosis. PD has run in my family through four generations and it impacted each person differently (it seems to be one in four for us). Late onset not to mention late diagnosis Parkinson's is far worse. My brother was the youngest to have it. It wasn't pleasant but it didn't affect him nearly as badly as my dad. Hopefully it will be the same for you 🤞🏻

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