Welcome to our community forum. We hope you’ll feel at home here as you get to know our lovely group of people with Parkinson’s, carers, and family. If you are interested we have some helpful info on our website regarding YOPD. You can start here: Young onset Parkinson's | Parkinson's UK. Alternately, we have a free and confidential helpline staffed with friendly and knowledgable advisors who can offer assistance in a variety of ways. You can reach them on 0808 800 0303.
We hope this helps, and we offer our warmest welcome,
Hi rocknrollrobbie a very big welcome I am sure you will post lots of questions and suggestions to help all of us, From your title it makes me wonder if you grew up in the late50s or 60s. Again a warm welcome.
Hi my husband has just been diagnosed. He was told by phone by GP who is now chasing consultant to arrange meeting. I feel like we have just been dropped from high building. My husband has withdrawn and wont talk about it and I have no idea of what will happen next.
Sorry if this sounds like me moaning, I have my own bad health issues to deal with and know i will be the only one to continue to care for my husband. Have been doing it 24/7 for last 5 years. I just dont know how to cope, what to do, what to expect, Keep reading things but dont think they actually going in. I guess talking each day at a time is what i need to do.
Sorry I should be more worried about husband than me. Just need someone to tell me not alone.
We’re sorry to hear you and your husband are facing these challenges. The one thing we can guarantee you is that you are not alone. You’re sure to hear from the community soon on this point, but we would also direct you to this section of our website: Our support services | Parkinson's UK. You can also have a look around the site using the search function to find the answers to specific questions you may have. And if you’d like to speak with someone on the phone, do reach out to our free and confidential helpline on 0808 800 0303, and one of our advisors would be happy to lend an ear.
Hello J4
I could almost hear the panic in your post and clearly (it seems to me) you are both in total shock at the moment. Why wouldn’t you be, it’s a perfectly reasonable and very common reaction to what to many is a devastating and life changing diagnosis, which I can’t deny it is. That is probably the last thing you want to read. You will probably see it as confirming your worst fears. So I am asking you to read carefully what I write next because it is equally true. In a few months I will be ‘celebrating’ the 15th anniversary of my own diagnosis. I live happily alone, still get out and about - i am having a few days away soon and will be travelling to meet my friend on my own - I have only 2 hours help a week which I arranged privately just to smooth over a few issues mostly since I don’t drive any more and to help with the garden etc. Over that time I have made some adjustments but my story is as common as your reaction to your husband’s diagnosis and the shock it has caused. Literally hundreds live with it every day and many do exactly the same as me, just get on with life. Parkinson’s in most is very slow in it’s progression, there is time to adapt and adjust. You are both at the start of a long journey which, I don’t deny won’t bring challenges but that’s for later. All you have to do now is stop, draw breath and begin to get used to what has happened. Very little, if anything, will change immediately. You will know more when you see the Consultant. Most and I would agree, would advise you don’t go mad reading everything you can lay your hands on as you will probably get information overload and remember only the blackest of black stories which achieves nothing. Take it slow and steady finding out what you need to know as you go along.
I can’t tell you how long it will take both of you to adjust to this new and univited ‘guest’ in your lives, that’s a how long is a piece of string question, but you will. Parkinson’s is not the end of the world unless you choose to see it that way. Personally I see it as something I would gladly get rid of if I could, of course I would, but since i can’t it’s just a different turn in the road of my life; I still have a life and i shall make that the best life I can because as that shampoo ad said I’m worth it lol.
My best wishes to you both
Tot
J4 welcome you have had good advice from jason and tot, they are so right it is a very slow illness that comes along. i have had PD since 2010 and last couple of years it as tried to show me who is the boss, but yiu do have to try and put it in its place, going back to your hubby, my hubby is top of the class for his nursing skills but he his a man and I still think that they think like cave men, no matter what they never will accept that any thing is wrong with them, if truth be know it is us, the female ones who kept going, so moan as much as you like, get it off your chest, on the forum we all know what you are going though, also i have told this story many times, after coming out of the room after being told i had PD, a lady was given out leaflets for Parkinson’s uk. here she said take these with you (INTRO INTO PD) i picked up another one which was a bit more advanced, NO she said you do not want to read that one yet, how right she was. So j4 start at the beginning and just take each day as it comes, Any time you want to rant or just talk we are here, Do let us know how you get on,
Hi All,
My partner (51) was diagnosed just over 13 months ago with EOP. They said DAT Scan showed deterioration in both sides. He has tremor right hand, neuralgia type pains down arm and shoulder, and big REM movements. On trihexyphenadol and cocareldopa, and meds for urgent and frequent bladder. It’s been a shock (even though had tremor for about 5 years- we were initially told not Parkinson’s). Taking each day as it comes but this is first time either of us have reached out… thanks
Welcome to our community forum. Please have a look around. You’ll find serious, valuable advice and shared experiences from our lovely group, but also art, poetry, and plenty of humor.
Just so you’re aware, our website is your best resource for news, general information, and our wide variety of fundraising opportunities. You may find this section a good place to start: Newly diagnosed with Parkinson's | Parkinson's UK.
Added to this, we have a range of support services, including our free and confidential helpline on 0808 800 0303. Do feel encouraged to call and speak with one of our friendly advisors. They can assist with a range of services, some of which may surprise you.
We hope these resources can be a help as you get to know our community.
