Hi Tot thank you for that, we’ve had the OTs out they were very helpful. Provided grab handles near his bed & on toilet doors which have been a godsend. They are changing his meds to hopefully help with night sleeping. It’s all trial & error I believe. 
I will contact adult care 
Ok, so how do I actually create a post?
I can’t post an introduction. The Topic says I can’t create a post/topic. Is there a glossary of terms anywhere or a site map so I can see where I am and where I want to go?
I am getting very frustrated as I can’t seem to find where I am supposed to actually post my own Introduction. Help!
Hi @Eli,
I have responded to your query on the following thread:
I hope this helps.
Best wishes,
Reah
My name is Steve and I am 58 years old, working in retail for Tesco. I never had kids and live at home which is kind of the way I like it because I only fully relax in my own space. I have a history of anxiety and depression issues, but have noticed these becoming worse in recent years, and also began to notice tremors in my hands, firstly my left hand then both. I had a brain scan earlier this year which confirmed the consultants suspicions that I have PD. My left hand movements are slightly impaired but otherwise I am still physically able to do everything normally. The main adverse impacts appear to have been on my mental health thus far, mostly because I already had a pre-existing anxiety disorder.
My workplace has been very understanding and supportive, but aware that the years I am living right now are the best ones I have left, I have decided to cut my hours and get help from Universal Credit. I used to work all the hours I could get which was also not helping my mental health but now I aim to try and get by on about 25 hours a week.
My Parkinsons is now being addressed with medication as is my anxiety, the latter by dosage increases. The med for Parkinsons I have been given is Levodopa. For a time this seemed to cause serious mood swings and also increased levels of sexual interest, like being 18 again. But thankfully both these side affects have subsided again.
Well thats my story, apologies in advance for my tendency to be overly verbose. I am more used to politics forums, lol. And there you never use two words when ten will do.
Hi seb 7677 a big welcome to our site. yes I agree about you doing less hours at work life is to short, you might have read my post but when i found out that I had PD my hubby and I sat down and thought where do we go from here. I was around 63 each year we went on holiday with friends car was paid for house paid for no monnies worries. What did we want to do ??? Travel so we put the house on the market and gave the sons some money put some in trust for grandsons and said what we had left was ours. We had some great years been around the globe twice, still more to see but PD has now made its mark, So the moral of my story is think what you want to do?? ps we are now in an Anchour over 55s bungalow and still enjoying the small amount of money we have left. Keep posting on the site as their is a lot of advice from all of us.
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Very well put! I couldn’t agree more with your approach!
Hello, my name is Julian, 67. I live in North Lincolnshire. My Parkinson’s was confirmed in August 2022, I wasn’t surprised, I think I’d known for a few years. At the moment things are going along OK, the medication appears to be working, and I keep active, as much as I can. One delight is the love and support from family and friends.
Hi Julian56 Welcome a wee bit late but again welcome !! I am sure you will find lots of information to help you from all our Forum members. You can ask anything / I am sure some member some where will be in the same boat. Do keep posting Some times you may not get a reply for a while, Just keep looking.
Unfortunately UK Immigration are likely to refuse an applicant who will use but not contribute
to the NHS. Sorry to put it so starkly, but you will probably need to demonstrate you can afford to keep your mum and pay for private healthcare. Don’t chuck your money at a supposed immigration lawyer. Get advice free or at low cost from Immigration, Citizens Advice Bureau, Family Law Centres etc
Hi
I was diagnosed in September 2022 with early onset parkinsons
Hello Daffy76,
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,
Jason
Forum Moderator
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.
Hi J4,
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.
With our warmest welcome,
Jason
Forum Moderator
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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
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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