Puckfarkinsons
puckfarkinsons.bsky.social
Puckfarkinsons
@puckfarkinsons.bsky.social
Sort of blogging about life with young onset Parkinson's disease (amongst other stuff)

www.puckfarkinsons.uk

Latest fundraising: https://www.givewheel.com/fundraising/5606/100-mile-grand-slam-thats-4-x-100-miles/
The fundraising link is in the bio.

One month until the dot watching starts.

Keep looking up.

(Doggy pic because she's gorgeous)
April 3, 2025 at 8:01 PM
without telling the medical community how this miracle has been achieved). Life with a chronic disease is hard enough without having to fight for help that is rightfully yours
April 3, 2025 at 8:01 PM
Which is why my fundraising now includes Parkinson's UK. With the current benefit regime, people with PD need support making a claim or dealing with reassessment. (because the DWP regularly thinks that Parkinson's is not degenerative and sufferers have got better
April 3, 2025 at 8:01 PM
I know by overdosing I can run (jog/walk) long distances but there's not much employment in that sphere. And there's no point in being a postman if your lack of dexterity means you can't handle letters or write a missed delivery card.
April 3, 2025 at 8:01 PM
I'm aware that my working life is drawing rapidly to an end. Between the "on" times for meds I'm resembling the tin man, and even when the meds are working any stress means my tremor goes into overdrive which renders me effectively useless.
April 3, 2025 at 8:01 PM
Cure Parkinson's aim is to make itself redundant by finding a cure (and while pursuing that aim, hopefully stop the disease at least). Parkinson's UK's aim is to make life for those with Parkinson's better.
April 3, 2025 at 8:01 PM
Also "low physical activity"??? I had a HIIT class in the morning and a Tri club turbo session in the evening - have I set the expectation bar too high for my watch? 🤣🤣🤣

57 days until the Thames Path 100.
March 7, 2025 at 9:18 AM
The link to the fundraising is in the bio - and starting now the timeline is going to be busier with the training selfies (lucky you!).
Don't stop looking up.

#parkinsons #puckfarkinsons #parkinsonsawareness #cureparkinsonstrust #parkinsonsuk #danceforpd
#parkinsonssucks
#parkinsonsdisease
January 28, 2025 at 1:53 PM
'm finding the training more demanding, and I'm more fatigued all the time - so I'm having to dig more to get through.
Don't get me wrong, I know that 6 years after diagnosis I'm in a place that is a lot better than a lot of other people with the disease - that's a pretty small crumb of comfort.
January 28, 2025 at 1:53 PM
That's not surprising as there's no stopping it - the meds just mask the symptoms. I've prepped a list of the changes, otherwise I'd never remember them all.
The progression is going to make this year's running challenge that bit harder (because 5 X 100 miles is easy, right? 🤪).
January 28, 2025 at 1:53 PM
€29.90 single? 18 hour trip.
😭
December 5, 2024 at 11:26 PM
So I'm changing my fuelling sweets and hopefully tasting the rainbow will help the meds to be more effective.

I'll keep chasing the rainbow...

#parkinsons #puckfarkinsons #parkinsonsawareness #cureparkinsonstrust #parkinsonsuk #danceforpd
#parkinsonssucks
#parkinsonsdisease
#teaandtrailspodcast
December 5, 2024 at 12:45 PM
Anyway, back to topic. The meds work best without protein in my stomach. I usually fuel my runs using jelly babies as I thought they were fat free but a recent episode of @teandtrails prompted me to look at Skittles - which have zero protein compared to the 3.5% in jelly babies.
December 5, 2024 at 12:45 PM
Overdosing the meds lets me run but nowhere near what I used to be able to do. However, sometimes, just for a fraction of time, when the meds hit the spot, I can run and forget that I have Parkinson's. And afterwards I do get slightly bitter at what has been lost.
December 5, 2024 at 12:45 PM
Since diagnosis, the medication does a pretty decent job of masking the symptoms. Although the meds have increased as the disease progresses. Still incurable.
December 5, 2024 at 12:45 PM
Definitely a way of finding inner peace with a German Wirehaired Pointer (ears set to take off position)
November 30, 2024 at 4:08 PM
The serious training starts just after Christmas for the fundraiser (link in bio). Due to Parkinson's I go part-time in the New Year which means a big drop in income. My Parkinson's isn't severe enough to qualify for help, but serious enough to impact on my work. I'll be exercising more instead.
November 24, 2024 at 9:24 PM
Saturday morning was spent battling Storm Bert as we jogged (mostly sideways) for 8 miles along the sunny south coast. Nice out.
November 24, 2024 at 9:24 PM