Early onset


#1

Hello everyone,

I was diagnosed at the end of November after a DAT scan confirmed the neurologist's suspicions. In my late 30s with a job and a young family, I'm struggling a bit to know what it all means. Apart from stiffness and a bit of tremor in my left hand I feel pretty fine (tho exhausted) and don't know how fast things might change. The Parkinson's nurse was lovely but wasn't prepared to speculate on timelines, which is fair enough.

Currently taking selegiline (which sounds like something you'd dredge out of the bottom of a pond) and apparently we're aiming for the best quality of life for as long as possible. i tell people it could be much worse and I'm fine, but living day to day and not worrying about the future is a skill I'm going to have to work on.

J x

 


#2

hi dufflecoat

                    i was 36 when got dx i have a family & was a plumber ,they reckon i had pd for 5 yrs before i lived a very normal life for six years drinking ,holidays & partys with friends 17.5 stone ,finish work that was hard part everyone at work on your own so joined fitness centre got  a reason to get up! try not to lounge a round to much, you can talk to people who have had it for 20 yrs & just a bit stiff ,so my best advice is stay fit thats a big yes to pd & live life to the full , & try let small things not worry you so much try & be chilled as stress plays a big part of pd ! all the best .gus .. any q just ask lots of people here to help !


#3

Hey there, 

I'm late 30s. About to be a dad. 

I've had 'unexplained' symptoms for a few years now and even though I said PD from the start, three neuros said I don't have it! Anyway, just had a clear lumbar puncture and waiting on a DAT scan to prove that my symptoms are indeed PD. I'm the only person who has accepted it, apparently. Ha ha. My grandmother had it so I could tell from the start and I've a medical background. 

I've had physical symptoms for three years, right now I've a tremor internally which isn't 24/7, my left hand and arm tremor and spasm a lot but no one has noticed yet. My balance has recently taken a hit too and it's making me nauseous- but I'm getting used to it. My sense of smell is also less than perfect these days too. 

How is the selegilline in terms of side effects? I think I'd like to start on that one. 

Looking forward to hearing from you. 

H. x


#4

Hi H,

I also had unexplained tremor in left leg but not all the time, and was also aware i did things a lot slower. I was referred to neuro centre but i feel because my dad and his dad had tremor and never been Dx with Parkinson's they said i probably had Essential benign tremor and discharged me. Second referral had MRI but still no definitive answer and was discharged yet again. I had to fight for third referral even though my physio suggested that he felt something neuro going on, and luckily i received the DAT scan u are awaiting and this confirmed i had PD. I started of taking Azilect my consultant said it was better than selegiline and i also used to work in a pharmacy and know that Azilect is a lot dearer but has less side effects.

Azlilect Is the brand name for rasagiline and is 1mg tablet. Hope this helps and good luck.

Ollybex.  I