Yopd online meet up

Hi,

Im 44 male from Birmingham, married with a 6 year old boy just diagnosed last month which is pretty scary.

Still in denial phase. Told friends and family but not work and just started on madopar 3 weeks ago which i think is starting to work. I am an avid mountain biker, snowboarder, video gamer and Netflix/Disney + watcher. I work as an IT consultant (pretty boring I know).

Would love to meet similar people to hear about how you manage and any tips you have. I could not find a recent active yopd group in uk so far and everything seems to be in US. Message me if you would be interested to meet online and share experiences or invite me to your group if one dxists!

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Hi AAO,
Welcome to our forum community. You’re too right in wanting to share your experience with others going through YOPD. We would highly recommend reaching out to our advisory team. They are on 0808 800 0303, and this is a free and confidential service, staffed with truly wonderful people with a wealth of resources to share, including connecting you with groups in your area. We would also invite you to peruse our website, a resource in which many have found great value. You may wish to start here, an information section on YOPD.
We’re happy to have you here. Please have a look around. You might be surprised at what our lovely community has to offer.
Wishing you the best,
Jason
Forum Moderator

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Hiya! I’m 52 so youngish :smiley: diagnosed in Feb this year. Still working and mum to 2 teens so often no time to dwell on things. I think I took my diagnosis better earlier on but the reality has set in in the last couple of months and I have been struggling a bit. Work and family have been amazing though and I’m very fortunate to have great support around me

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That is amazing Vicki1008.
The fact that you have accepted this …, I have no doubt I will be banned if I state my true thoughts on PD, and are getting on with your life is stunning.
I feel exactly the same way.
I have it, there is basically bugger all I can do about it, so let us try to make the best of it.
One thing I learned long ago is that we should never regret the things we have done, they are in the past, we cannot change that now, but more importantly, regret the things you haven’t done.
Make a “bucket list”. of the things you want to do, it could be as simple as " going and having a glass champagne on a mountain top, or on the beach, going to a play at a theatre,… you know the things you "just didn’t have time for’.
And of course going to cities/countries you have always wanted to visit but never have.

:smiley:

I went through the stages of grief when I got diagnosed this year at 50. Disbelief, denial, anger but now I’ve come to accept it.
Now that I’m close to perfecting my medication I look back at how bad I was to see how good the meds can be.
Tips.
Obviously exercise is good to slow down the progression so that’s what drives me to the gym. I see it as medicine not exercise.
Find out when it’s best to take your medicine, it can be down to your lifestyle and it’s personal to you.

Have you tried the First Steps program run by parkinsons uk. It’s very good to meet other people in the same boat and they give you great advice.

Darren

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My advice to you AAO is to have DBS in the future as soon as possible. It changed my life so much for the better. I also have a young son. I was diagnosed at 37, my DBS was this year at 44. DBS was the best decision that I have ever made, it works so well for young people. Pills after some time will give you more and more side effects. Apomorphine pump didn’t work for me at all.

Hi AAO,

Welcome to the group. My husband who is 54 was diagnosed end of November 21,we too live in Birmingham, we are south Birmingham.
You are quite right there doesn’t seem to be any YOPD groups.
It is understandable that your diagnosis is scarey, very much the unknown. In time you will hopefully start to except your diagnosis and get in with your life. Seems like you are very active which is a great thing to help you along your journey.

Hi, YOPD chap here, diagnosed at 49 in 2019. It’s crap. But as someone once said: Live the life you’ve got.
There is a bunch of us YOPD people who used to meet on Zoom; for various reasons we got out of the habit but member @AnaElsa and I are trying to reboot it. We are having a YOPD Zoom on Thu 5 Jan at 8pm (UK time). Message me or @AnaElsa for the connection link. The idea is to link up, exchange introductions and ideas about keeping symptoms at bay and whatever else is on your mind. Hope to see you there!

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Hi Ana and Pcyc,

I live in Cape Town, South Africa and was diagnosed two and a half years ago now.
I do exercise, going to gym 2 to 3 times a week and cycle twice a week.
It really does help.
I find the tremors get worse when I am stresses or ‘angry’
I would like to join your group that is if you include people from outside the UK however 20:00 your time is 22:00 here.

Well we have just finished our YOPD Zoom session. Myself, @AnaElsa, @AAO and @Dhobbs joined together for just over an hour and chatted medication, exercise, children and alternative therapies amongst other things. It was deemed a success :grin: and so we have pencilled in the first Thursday of every month at 8pm to be a regular meeting time. Direct message me or @AnaElsa for the connection link for the February meeting on Thu 2 Feb at 8pm UK time. See you there!

Hi all, reminder meeting due next Thursday 2nd Feb, 2000, hope to see you there, others welcome to join, DM me of Pcyc for the connection link
take care

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I have it in my diary :+1:
Same details as before?

Hi as far as I know, see you Thursday, anyone else interested in joining feel free to DM for the connection link, take care :smiley:

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Hi thanks, note all the link has changed for tonight’s meeting. Please DM for the link if you don’t have it, sorry I can’t remember everyone’s user name to send it on
Ana :smiley:

Hello

I would love to join the YOPD meet up. I was diagnosed in September 2022 at the age of 44 and since diagnosis I have not spoken to anyone who is in a similar situation to myself. I’ve taken the diagnosis well however I’ve not really discussed my feelings about it with anyone. My neurologist is very matter of fact and I’ve only had one nurse appointment. I’ve read far too much online. The YOPD seems like an ideal place to hear everyone’s own experiences and share mine. I’m concerned what the future holds for my health and work so hearing how you are all dealing with your own journey would be really beneficial. I truly believe in the power of community.

Are any of you are in the East Sussex area?

I look toward to hearing from you

Geraint

Hello everyone,
I’m new here. I’m 44 y. o. I would like to join up to yopd zoom meetup.
You still have regullar meetings?
Sorry, my English is not great, but I would like to hear you all…
Martina

I would love to join a zoom meeting :slightly_smiling_face:
Im 44, dx 2 years and live in Cheshire.
How do i get on board?

Hi Martina,

Just go onto the site, and you will see a window showing you how to go about it

Hi all look out for the link from Pcyc, look forward to intros next week, take care all :smile:

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Hi all
We are meeting again on Zoom this month, Thu 6 April 8pm. DM me for the link.
I have sent the link to @AnaElsa @Geraint1978 @Martina - see you there!