Newly diagnosed husband (age 36)


#1
Hello, My husband has just been newly diagnosed with Parkinsons at the age of 36. At the moment he just has a slow arm (can't really type at a normal speed, arm hangs when he walks, and tiredness). We are a mixture of devastated, shocked, and trying to help each other.
He will have a neuropschological test in 2 weeks time and start on L-Dopa to see if he responds. If he does, it will be the final clincher for the diagnosis, though the neurologist has already told us that he has Parkinson's. (He's had MRIs and all kinds of other tests done to eliminate pretty much everything else) Whether he will stay on l-dopa after the test period i just don't know.

Our biggest challenge is work - my husband is just about to finish a PhD after which he planned to launch his career - and now he has Parkinsons. I have been on extended mummy break, and was just starting to look for a job. We have been advised to think very carefully about our career choices - build in as much flexibility as possible. No stressful jobs, and ones where we could possibly even take off long periods for me to either care for him or for him to recuperate. Part time work would be good. We also have a small and very energetic daughter, who will need time and care.

We do not live in the UK, but i am from the UK, and found the local groups, well frankly, cr*p so far. I hope you will allow me to join as a sort of expat... It is also plausible that we would move to the UK, as it would be good to have family and friends around once things start to progress with the Parkinson's.

I have started to tell some friends who live in the UK, and they were astonished that we were given a diagnosis of Parkinsons, a bit of a chat, a brochure that we were told was quite general and not all relevant for young onset parkinsons, handshake, and out on street in cold light of day. We didn't even make it home before breaking down and well, we were, and to some extent still are a bit of a mess. Actually, i'd already started crying in the doctor's office. So, big shiny bonus point to the NHS, who i hear from several people immediately give you some sort of counselling to deal with the shock of the diagnosis of a chronic illness. smile (have always been fan of NHS, i know its not perfect, but i've lived in 4 first world countries, and i still think its the best of the 4 i've tried!).

I hope i haven't written too much already... Thanks for reading.

#2
Hi - I'm new to the forum but not new to PD. Just a handful of years ago my diagnosis was very much like yours. I was aged about 39 at time of first symptoms. My mild lack of dexterity in one hand was instantly and correctly identified by my GP as 'some sort of parkinsonism'.
Diagnosis was for most practical purposes confirmed by eliminating all the other options. It was over a year before I had a second opinion that reinforced the diagnosis and a further period of nearly a year before starting meds.
My son was two at the start of this story - my daughter, now 5, was a twinkle in my eye. PD has been slow progressing for me, so much so that even most of my close friends new nothing about PD until 18 months ago.
I recognise so much about your situation - and I hope my story gives some encouragement.
You have done one thing much better than I did - you have come to this forum immediately. I stuck my head in the sand for years when I should have been here.

#3
hi there

i know how you feel. i was diagnosed 6 weeks ago here in jakarta, given madopar and shown the door. i got home and cried like never before. zero support groups here, so this forum has been a life line in feeling not alone. the madopar seems to be working, the rigidity in my right hand is better, and my gait seems to be steadying. i hadto drive all over jakarta today to get more madopar, its in short supply, another aggravation.

but no use feeling miserable, i want to make my days count for more. easier said than done of course. exercise helps me a lot, trying yoga again, reading about brain plasticity (where the brain heals and adapts itself), will try meditation, positive thinking, mental imaging, whatever i can to keep my quality of life. hope your husband and you find new inner strength!

take care

#4
Thanks both of you for taking the time to write. We are doing much better now, and are ready to "fight"... Feel calmer for being better informed and having heard so many positive stories.
Jakarta - i'm glad the medications are helping and i hope you find a regular supply. I'm glad you also find help on the forum, especially as you seem to have very little support in your area.
Thanks again both of you.

#5
hi germanda
ive been diagnosed with pd,given a perscription told a pd nurse would be in touch not and see a gp ffor stronger tablets in 4 week and shown the door.

on the plus side i took my lad swimming,did 6 lengths and right are really hurt managed to do another 10 but trying to get up steps felt like everest.feet cramping i tripped on the top step and nearly fell.

but i will try again next week.