I was diagnosed 3 years ago and remain active and capable on rasagiline and levadopa, (low doses). My partner and I are in our fifties and attend our local support group and find it helpful. We were wondering whether there are any other gay Parkinson's folk out there who we could get in touch with to exchange experiences ? We enjoy swimming, eating out, cinema, collecting, yoga, countryside, architecture, seaside, and live in Somerset. We look forward to hearing from you.
I saw your post. I have been recently diagnosed with early onset Parkinson's ( I am 37)
I am also gay, and living in Bristol, teaching Yoga.
Just joined this forum today in hope of info and support (both of which have been thin on the ground)
Thank you for your reply.
When I was first diagnosed I was in a state of some shock and denial, it was a lot to take in. But as time went on we were able to find quite a lot of information and support. The local Parkinson's Disease Nurse Specialist (PDNS) was very helpful and supportive. A big source of information was the book: "Understanding Parkinson's Disease" by Professor Tony Schapira published by Family Doctor Publications Limited in association with the British Medical Association isbn:1-903474-25-6 (no, we're not on commission !). We also found the quarterly magazine of Parkinson's UK; "The Parkinson" (annual subscription is very reasonable), a good source of information.
Same here not impressed with care or treatment received given a dx and a prescription and left to get on with it
My Neurologist did the same when he sent a letter to my gp starting with a opening comment of ' i saw this pleasant 47 yr old lady with her partner ' a male friend of mine who is gay went to appointment with me for moral support we had a good chuckle about it though
Thanks for the messages. I have still yet to receive any help from anyone despite many answer phone messages left and emails. It's discouraging as I thought there would be support.
I'm sorry to hear that you have not had good support after your diagnosis. There are several sources of support available. At least one of them is likely to be right for you. Talking to a Parkinson's Nurse Specialist is a good place to start. They don't exist everywhere (yet) but they are wonderful.
There are support groups all over the place including one in Bristol which includes a younger persons group. You can find contact details for your nearest group on this website (hit the link 'support for you' at top of the page). You can call the Parkinson's UK helpline team for advice about pretty much any aspect of life with Parkinson's. If there is a nurse specialist near you they can help put you in touch.
and of course you can ask anything on the forum.........
What style of yoga do you teach?
I hope that helps
I agree with EF.....get a specialist nurse if possible. They are magic.
I must be lucky, I have a brilliant consultant, who is very polite and extremely thorough, a wonderful specialist nurse, a great GP whom I can talk to without feeling a nuisance, he is always there for me and age concern have also been very helpful. Look on the wider net for ideas and advice if you are not getting the service you hoped for.
I personally ask my doctor to send me to Lancaster Infirmary for all my needs. I have never found them wanting. It is not the closest but I stick to what I know is best for me.
Nostromo, I'm 36, gay and about to be officially diagnosed. It feels even more daunting knowing that I don't have a partner/kids, a support network. Anyway, if you want to drop me a line, please do!
I've just joined the forum although I was diagnosed 4 years ago. I was not sure what sort of things people discussed and I didn't want to read things that would make me feel worse.
I too am gay, or more accurately bisexual.
You say you are about to be diagnosed officially. That seems odd that you may have found out "unofficially" which is not ideal.
I can understand you feeling so daunted but am not sure what I can say to alleviate this. All I do know is that there are many effective medications which are capable of controlling the symptoms and the sooner you are prescribed something the better.
Please let me know haw you get on.
Hi, happy new year to you all!
Hey Ian, thanks for the message. I was dianosed in sept at 37. I can relate to your feeling daunted, I don't much of a family support network either. Feel free to get in touch. Keep your chin up mister!
Hi MusicaL Chemist,
Happy new year!
Initially I was told I had MS, then after further tests I was told it was PD.
It's understandable you had reservations about the forum, I can relate. I have found the supportive messages helpful though. I plan to visit a support group soon. This will be a challenge as I have never been much of a joiner!
Cheers for your message.
hi nostromo i am not gay but i was told i have pd at 32yrs old now 42 ,but i have been told they have a really good young parkinsons support group in bristol.as it was the nearest to me ,but still to far live in weymouth.but you are very lucky as you have frenchay hospital which has top pd consultants,and movement nurses had my dbs opp there.
Cheers, yes I have got in contact with the group and plan to meet sometime soon. Thanks for the message. Hope all good with you.
yeh not bad ,just struggling through this cold weather aches & pains.hope all goes well for you.
cheers Gus....you too...spring is around the corner, so hopefully that will ease things for you.
feel like a slug at mo. cant wait for the snail
well, judging from all the snails in my garden it's just around the corner....or some time in March at least, Hang in there! Nice dog by the way, we had a cream lab when I was a kid.
CHEERS SHES AN OLD GIRL NOW 13 YRS, BY THE WAY HOW ARE YOU !
How does one write directly (privately send a message) to another on the site? I thought that was an option? Greetings All.