Hi!
I’ve just become a Volunteer working with Parkinson’s UK.
I’m trying to find out if there is enough need for a LGBTQI+ Parkinson’s or neurological conditions network / group, covering the UK’s North East and Cumbria.
I’d love to find out if there’s anyone in this group (wherever you live), who’s LGBTQI+, and to get your thoughts about a possible new network / group.
Looking forward to hearing from you.
Regards
John (he/him)
Hi John, you’re the first post I am replying to diagnosed Tuesday after apparently incorrect FND diagnosis 2021 and loads questions obviously that brought me here as a queer man in my late 50’s. Are there such groups in London? I would imagine so?
Thanks
Mark
Hello Kram1 and John. I am a gay woman living in Lincolnshire. I have been diagnosed with FND after my previous neurologist beleived I had cerebral ataxia. However, my current neuro thinks I have developed a parkinson’s syndrome. I have been referred for DAT scan since last November and am not likely to get an appointment for a while.
I feel in complete limbo with my symptoms progressing. May I ask what changed for you to change the diagnosis?
Anyway, I hope you get the help and answers you are looking for.
Jan
Hi Mark and Jan
It sounds like you’ve both been through a tough time. It can take a while to understand and accept that you’ve got a serious medical condition. And then to be told it’s something else must really suck. I found the First Steps programme incredibly useful. It’s an online programme for people recently diagnosed with Parkinson’s and their family, friends and carers. Jan, if you’re interested, you’d need to check to see if they accept people who may have a Parkinson’s syndrome.
The LGBTQI+ online group I’m helping to establish has a focus for the North East. We’re definitely not excluding anyone because they live elsewhere, so you’d both be very welcome. I can’t find anything that points to a similar group in the UK, and according to Parkinson’s UK, the new LGBTQI+ group is currently unique in the UK. There are the usual local Parkinson’s UK local groups across the country which are designed to be inclusive and open to all affected by Parkinson’s.
Most of the initial promotion is happening in the North East, and it’s been posted nationally on the Parkinson’s UK website:
The first meeting is on 3 June, 2023.
If either of you are interested, please contact Linny (details on above page).
Kind regards
John
Hi Jan, I first noticed my left arm lost motion running in September 2020 and following year made it to Croydon University Hospital that was the earliest face to face I could get that led to FND diagnosis Feb 2022. I then got re-referred to local St Georges looking for help to cope with FND since there was progression now restricting walking and they this week diagnosed Parkinsons that was a shock since I was told giving up work could cure me, a hope now removed. The change was stiffness in my left arm and probably other stuff, still waiting on letter, but I am awaiting MRI he said was only to reassure me new diagnosis is correct. Now, living on first floor thinking need to move and all sorts of other things wanting community wherever I am, family etc so lots confusing thoughts right now, telling work etc. I hope you have FND and that hope still since I am getting used to what feels like a whole new identity and world now. Good to get your reply and hope that somewhat answers it? Mark
so helpful John, thank you, and followed up both those, bit of a week for me so practical things putting in touch really help
Hi Mark, thank you for coming back to me.
I certainly recognise what you are saying. I lost my arm swing a long time ago. My left side is most affected with much stiffness and rigidity together with slowness of movement. My mobilty has got to the point where it is difficult to walk more than a 100yards without fatigue. Plus other PD symptoms. It has slowly progressed which is not usually the case withnFND.
My neuro wants me to have the DATSCAN to help with diagnosis. I know you can have both.
At the end of the day I would like a definitive diagnosis. I already have Neupro patches but there may be a better treatment regime dependent on their findings.
I do hope you find your answers and I agree it is a lot to come to terms with.
Let me know how you get on and stay positive.
Jan
will do and thanks, good to talk to others going through similar things and worse, stay strong and living for today, Mark
had the Datscan that confirmed left sided weakness and dyskinesea I’ve known for a long time now is due to right sided reduced uptake within the nigrostriatal pathways bilaterally, more marked on the right supporting Parkinson’s diagnosis. In a way I preferred the FND diagnosis that kept me in a bubble thinking it could all go away, but it’s good to know the truth. I am remarkably able, can still run when I get it together to, riding bike carrying camping gear when I want to albeit more difficult. Hope you have a positive experience in November. Its good to concentrate on doing as much as we can when we can, Mark
This is just to flag the the LGBTQIA+ group mentioned above is now running and is for people all over the country. We have online meetings every other month. Some of the meetings are just for members to chat and others will have a guest speaker. The next meeting will be in April. If anyone is interested in joining the group please let me know!
