•sensitive• Does anyone have Parkinson’s?

[ninjahamster]

And can you tell me your early symptoms please?

I don't have it myself but a very close friend does. Her main symptoms have been extreme slowness of movement and excessive sleeping. No shakingg.

Thank you x

A close relative had it. Constipation was a very early sign because gut motility can be affected.

Thank you

My dad’s first symptom was being unable to remove a single bank note from his wallet. A combination of tremor and lack of fine motor skills in one hand

My Mother - she felt like her feet were sticking to the floor .

She didn't have the same symptoms as her Father . He had the tremor and "pillrolling" finger movement .

Making me think I should get myself checked as I sometimes find my gait a bit wobbly , going off at an angle if I;m in an open space . Ok in a hall or corridor .

Are you worried you may have it @ninjahamster?

I don’t but a relative does. First symptoms appeared to become a slight tremor in one hand and an inability to see pleasure in things and not wanting to do nice things. We’ve since realised that it probably was due to the lack of dopamine. Why bother to make the effort to do an activity if your brain isn’t going to reward you with all of that lovely dopamine?

However, it’s not all bad. They’ve had a diagnosis, a couple of small reasonable adjustments at work and they are now wearing the Beechband on the advice of their Parkinson’s Nurse. I don’t know if it’s a coincidence but they are suddenly planning evenings and days out, seem happier in themselves (less moaning) and they even look a better colour. Other people have commented on how much better they seem.

Speech therapy avd physio have helped as well obviously and they are quite religious in their approach to the physio so that is good.

First symptoms for my dad were low mood, vivid dreams and constipation. He had also had kidney stones a couple of years earlier and apparently there is a strong link between kidney problems and Parkinson’s.

The symptom that led to diagnosis was what he thought was a frozen shoulder and loss of arm mobility.

The shuffling steps and rolling gait came later, he never had much of a tremor.

For my Dad, constipation and virtually no sense of smell. My mum first realised that he might have Parkinson's when she asked him to pass the salt and he his hand has a tremor. The constipation and lack of sense of smell started many many years - maybe more than 10 - before the incident with the tremor.

My partner has PD. First symptoms were a tremor, reduced movements and a stoop. His balance is also very precarious. I think his sense of smell is affected too.

Looking back, there were signs for fil.
Complete loss of smell (he didn't tell us)
Then loss of tact filter 🙄
Then gait changes, moving much slower
Voice changes (hoarseness)

My granny’s first symptom looking back was fatigue.

My dad developed tiny writing and anosmia a few years before other symptoms began (trouble getting out of chair, freezing). No shaking. Would walk with straight hands by his side

A close friend has it but it can be really complex when it it’s Parkinson’s dementia. The issues we noticed (other friends didn’t) was a reluctance to get involved with everything - very passive until something sparked annoyance and then rude and beligerent. Lack of confidence and little interaction with us.

Gait is extremely stiff. Some shaking and lack of fine motor skills. Falling asleep is common and lack of any conversation is noticeable. We think help was sought way too late and medication is having no effect at all. Falls are therefore a huge daily hazzard and living conditions haven’t been addressed. No ground floor cloakroom. No shower - just one over a bath. No prep for future living and it’s concerned us a great deal. We have tried to make suggestions but it’s not easy!

What I would say is that I know early medication can really help. Don’t leave it too late! Get house alterations if needed. Just make life easier!

Yes I do. Heat intolerance on a GRAND scale. I’m typing this as I’m sat in front of a fan in October! I have a fan blowing year-round and everyone knows me as the sweaty faced woman 🫣 This one is probably the most impactful of all my symptoms as it means I can’t wear make up or do any DIY work in the house as I’m hot and quite literally dripping in sweat within 2/3 mins. I can’t go into town shopping for example as I’m red hot before I even get from the car to the first shop.
Also, my bladder has all but given up normal operation. It doesn’t empty fully each time, I feel like I need to wee 24 hours a day (yep that’s as uncomfortable as it sounds and you never get used to it) and when I do go, I have to manually squeeze my muscles around my bladder in order to empty it. I’m seeing Urology next month to be put on a Catheter and I cannot fucking wait. I’m counting down to it like sodding Christmas. 11 years I’ve needed a wee for with zero relief, 11 years!
Tremors, obviously, but only in my hands and arms and it began by only occurring after exertion, however now it’s a lot more frequent. Also I often press keys I don’t mean to press when typing or my fingers tap on something I didn’t intend to tap on! Very annoying when you’re browsing online shops!
Very occasional eye ‘fizziness’ which is my own descriptor for what I think they call blurred vision, even though that to me is slightly different; It really does look like the world suddenly went all fizzy.
Oh and acute stiffness, omg. I’m on a transdermal slow release patch for pain which helps tremendously with the stiffness but without it - I’m like a 90yr old (no offence to any 90yr olds) and that’s genuinely no exaggeration, I can barely walk. Of course in the beginning it wasn’t as bad as it is now which can be said for all of the above tbh.

Oh and extreme fatigue…. I forgot to mention that as I already have chronic fatigue syndrome and have done since I was 13 (now 41), so it’s something I’ve always battled; It’s just so much worse now. A major contributor to my not being able to work, sadly.

As others have said, very early symptoms (10 years+ before diagnosis) can include loss of smell and constipation. My dad had these symptoms.

I don’t have it, but my father’s early symptoms were a noticeable change in his gait (it became quite shuffling and his stride was shorter) and he started to do some things very slowly. I remember watching him serve himself some fruit salad from a bowl on the table and thinking ‘Why is he moving at the speed of a snail?’

He never had tremors/shakes even 20 years later at the most advanced stage of his illness.

Thank you so much everyone, it’s been really helpful.

@TeddySchnauzer I hope having the catheter will make things more comfortable for you....remember to drink lots.

So my symptoms are:

high wbc
high neutrophils
Tremor in hands which is really bad after activity eg hoovering.
constipation
Boiling hot ALL the time, have to have doors and windows open.
hallucinations
depression
anxiety
struggle to write, my hand just doesn’t seem to work.
Constant fatigue
Waking lots in the night
blurred vision
poor balance

Does this sounds like signs?

Extremely weak, 9 years in tremors, odd sweats at times, muscles aches.
Hate it all

Some of those are associated with Parkinson’s yes, although people suffering with Parkinson’s sometimes tend to have a lower white blood cell count.

Whatever is causing the symptoms though, you need to see your GP urgently.

My “D”M assumed my DF had Parkinson’s and pushed for a diagnosis. It was actually non-hodgkin’s lymphoma, which could have been treated if it was picked up earlier.

Have you tried the Beechband ? @Nsky62?

I know I sound like I’m getting commission from them but no, I’m just amazed at the positive results seen by my relative. They’re having work colleagues and friends comment on the difference.

I have 2 beech bands somewhat helpful