Parkinsons

Author
Discussion

Dan_1981

Original Poster:

17,491 posts

204 months

Wednesday 7th December 2022
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Dad was diagnosed recently.

He's been slowing down physically for a while and has had a tremor in one arm / hand for quite a while - getting seen on the NHS was impossible and taking forever, they've eventually gone private and got a pretty much immediate diagnosis.

Prescribed Dopamine and advised he'll see an improvement in the next couple of weeks but not to expect miracles.

Understand there's no cure and it'll be a gradual decline but what are people's real world experiences?

boombang

551 posts

179 months

Wednesday 7th December 2022
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Sorry to hear that OP.

My father had Parkinsons, post death I've been questioning if it was undiagnosed Parkinsons Plus. Indeed his Parkinsons meant cancer was missed, which unfortunately he died from and very rapidly too.

Knowing what I do now my number one piece of advice is to keep tabs on behaviour, better still keep a diary and even better ask him to. Keeping a record of week by week helps track the illness, and an intraday diary can help follow response to medication (e.g. 09:00 took 1 Xmg tablet, 10:00 increased mobility, 14:00 hugely decreased mobility and felt very low, 17;00 took Xmg etc.)

Do be prepared for mood swings and big highs/lows off the drugs, the lows seemed lower than baseline looking back, and watching someone sitting slumped barely moving for an hour on the biggest lows was crushing.
Encourage exercise, as much as he can take without ramping up too hard. Something with co-ordination like cycling (even static bike) is really good. Anything like that massively boosts moods both short and long term.
Stop drink, stop anything that gives a false buzz and focus on anything natural.

mcelliott

8,852 posts

186 months

Wednesday 7th December 2022
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Have a good friend who was diagnosed about 12yrs ago, he's now 65, 6yrs ago we cycled across the Pyrenees from Atlantic coast to Med coast, he still bikes around 500km a week despite a very bad tremor, his speech has got progressively worse too, one thing he has got apart from huge physical strength is the most unbending mindset I have ever seen from anyone, his doctors are astonished at how he has kept the Parkinsons at bay.