YOPD and London


#1

Hi everyone,

I'd be interested to hear how many folks on here are YOPD, and also YOPD and in/near London?

I'm 34 and in south east London. I emailed the SLYPN about a month ago but didn't get a response, but wondered if it might be nice to find something whether its here or meeting? But I realised I really have no idea how many of us there are!?

Best,

T


#2
HI, Can't honestly say new to forum as visited when I was first diagnosed (at 45 , seven years ago) !!! My name comes from my fondness for elephants; more that Parky's is often "my elephant in the room". My family are tired of me mentioning it. but somedays it is so huge there is no light and somedays so small it troubles no one. Anyway, in a good place. Even though am on significant meds, and have had DBS x 2 and have had no significant outcome.

#3

Hi t_g

The SLYPN is an active group. You can find their website at: http://slypn.org.uk/. Do try to contact them again. If you have any problems, write to us @web@parkinsons.org.uk

Hope it helps

And welcome back PACHYDERMSRUS!

Ezinda


#4

Thank you Ezinda - I have made contact now!

Best wishes,

T


#5

Hi t_g.

I'm interested in the SLYPN. What do they get up to and where are they?

Can anyone tell me the age bracket for young onset? I'm 52 years young!

Faith


#6

Hi Faith

Links for further details about the SLYPN is in my post above. On this website, we use the term early onset to mean people who were diagnosed before the age of 40. But, check with the group anyway. They may have different criteria.

Ezinda


#7
Hi t_g I'm 38 diagnosed at 36. Not from London, I'm in Manchester, but thought I'd say hello. I asked a similar question to hunt out us youngsters a few months back. We appear to be all in hiding on here. So how are you? Are you on meds yet? How are you coping after the diagnosis? I'm still trying to find the best combination of meds for me, but I'm struggling on. Would be great to hear more from you.

#8

hi i was dx at 34 now 43 hope your  ok!


#9

Hi everyone!

I'm not doing too bad thanks ta - still finding it hard to get used to the diagnosis and telling people about it (it was less than four months ago), but generally managing to stay reasonably chipper! I'm away doing a job that I thought I might not be able to do when I first found out, but it's turning out ok far so has help build back a bit of confidence. Lucky that thats an option I guess.

I've been on Azilect for about 12 weeks, and I think it has made a small improvement, but hard to tell. I can't see my neuro until the new year, but am interested to see what they recommend meds-wise. What meds are you on?

Am intending to go along to a SLYPN event once I'm back home next year.

Best wishes,

T


#10
Hello guys, I am 38, was diagnosed a couple of months ago. How you all getting on? Anyone work in city?