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 My husband has withdrawn and wont talk about it and I have no idea of what will happen next.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.
Good afternoon KelviinS … I am 70 years old & was diagnosed with Parkinson’s in June 2023. I tried 2 other Parkinson’s drugs which did not work for me. I was then prescribed Sinemet which I have tolerated very well. I started on 1 pill a day for a week. Then 1 pill twice a day for a week. Then 1 pill 3 times a day for a week.
Then 2 pills 3 times a day, which is where I am now. My Parkinson’s Nurse said start with the minimum dose & let your body get used to it gradually.
Hi, I’m a 47-year-old man from Pennsylvania, USA who has had some distressing symptoms for years and sought a referral to neurology last year for possible tremors, right-sided stiffness, and incoordination/balance issues. I was put on a dopamine agonist, and as part of my normal research into every new health condition, drug, etc, I did a lot of searching about it and at some point found my way to this thread:
I read probably 250 posts in (skimming and ignoring some) the first time and another 50 the second, and I registered for an account here mainly to say that there is a HUGE amount of very valuable information in that thread despite the arguing and fighting that needs to be ignored. Some people asked very useful and important questions, in describing Obsessive Compulsive Disorders (OCD) / Impulse Control Disorders (ICD), others shared important (and often painful!) experiences, all in the name of helping others, new people like me, understand.
I registered here to tell you all that it helped me to understand, and to say thank you to EVERYONE who participated and put that out there for me to find years later.
I would like to share what I learned about myself in return, maybe it can help someone else understand something. I found the beginnings of an ICD / OCD in myself, and it was so simple and benign it would be completely unrecognizable as such without what I learned in that thread.
I am into cycling. I don’t have a diagnosis yet, but it’s headed in that direction and I do know that adding more exercise to my life is good idea, so I’m trying to pick up a mountain biking habit this year. I also probably have ADHD and do hobbies with a lot of gusto at the start, so it’s not weird that I picked up several cheap used bikes or ended up with a few more bikes than intended. It’s not weird that I bought and sold a couple that I had no intention of riding, it’s not weird that I’ve built and rebuilt 20ish over the last three months, and it’s not weird that there are currently 6 bikes (not all mine) between my dining room and living room (you’ll just have to trust me on that).
Still, something about all it felt off to me and I honestly asked people close to me a couple of times if they thought anything was strange. My normal friends of course all said yes but all of my bike friends thought it was pretty normal for me. I didn’t spend extra money we don’t have, it didn’t get excessive (by our standards), I wasn’t doing anything unusual like just collecting them instead of riding, etc. As a distraction while I figure out some pretty scare health concerns, it seems really positive and people encourage me to lean into it. I mostly have, but in the back of my mind, I kept thinking something was off.
I read through that thread again a week ago and the idea that ‘everyone develops an ICD / OCD, it’s just a matter of genetics/dose’ has been ringing in my head and I was glad to stop it yesterday at the doctor visit. That might have changed my attitude towards it a little, or maybe it just percolated in the back of my mind long enough, but I was talking to my wife about it afterwards, and it suddenly just clicked for me.
Do you know what IS weird? Standing there and just staring at a bike I built and admiring it for more than an hour. Sure, I’ll stand back and admire a bike I’ve built, but I’ve never done THAT before, and I did it with EVERY SINGLE BIKE, some multiple times over days, sometimes for two or more hours at a time. I stayed up later than I wanted a couple of times, especially with a new build, and I even started just planning to be up late if I was going to finish a bike in the evening.
It gets even weirder! On some level, I knew it wasn’t normal to just stand there and stare at a pretty bike, so I even had a cover story in case someone asked (“I’m thinking of rebuilding it into something else and considering options”). More than once, I moved a bike from the dining room, where someone was using the computer, to the empty living room so I could stand there and stare at it without anyone noticing.
I want to point out that on some level, I knew this was weird, and I went straight to hiding it and being ready to lie about it if anyone asked me about it. And this is all while I was seemingly extra concerned about the idea of developing an OCD / ICD and being extra vigilant and seriously considering the right area in my life. When I told my wife, my therapist, my doctor, and my friend about my bike hobby to get their take on things, I wasn’t being deceptive when I left out my new staring/admiring habit, I just didn’t think of it.
Suddenly I understand how compulsions and impulses arise in people with these drugs and are so hard to detect. I started on .5mg ropinirole at the start of August and titrated up to 3x a day. It was increased to 1mg 3x a day in October. I’m not sure when I made up my cover story, but I know I started staring at the very first bike I built at the end of September. I even remarked to my wife that it was so pretty I couldn’t stop looking at it!
I would like to call out easy it is to discuss this for me because it is all so benign. I would like to recognize anyone reading this whose thing isn’t so benign and say I don’t think it’s your fault. These drugs can make you do strange things right from the start.
I’m not sure what I’d stare at when I stop building bikes next month and move onto a new hobby and I’m not super interested in finding out so I’m stopping this drug and won’t be starting another DA.
Anyway, that is my story and I felt compelled to share it here where I found the most useful information. I’m not really participating in forums, so if anyone ever wants to copy/paste into relevant discussion threads about DAs, please do so!
Welcome to our community forum, and thank you for sharing your story. You are most certainly right in that obsessive behaviors can be difficult to talk about, and your “benign” appreciation of your bike collection, as it were, is a curious and light-hearted presentation of the discussion which might enable others to feel more comfortable sharing their stories.
You say you do not participate in forums, so we will thank you once again for your candid and positive story, and just quickly let you know that our community is here if you do wish to engage, and our helpline, on 0808 800 0303, is ready to help with any questions you may have, or in fact if you just need someone to listen.
Hello mattre and welcome to the UK forum.
I’m glad you found some useful information etc and you then went on to write a most interesting piece about your own experiences. I remember at my very first meeting with my consultant he asked if I thought I had a compulsive personality - not a question I was expecting, but he explained why. If I remember rightly at the time I said something like ‘not particularly’ but I now think everyone has the potential to be compulsive or impulsive it depends where you fall on the continuum and whether you are able to keep it in check. For some like us, medication can be an unwelcome factor in making any tendency you have worse and, along with much else about Parkinson’s, it is not a well known or well understood factor.
I was interested to read of your response and your use of the word weird. If you look at a dictionary definition of this you get words like very strange, unusual, unexpected or not natural. However I also found this quote ‘People often get called weird when they make a lot of social mistakes. They’re seen as strange because their behavior is not what others are expecting. People may also assume somone’s social errors are symptoms of a more core oddness. (Succeed socially.com) Either way it seems to be more of a social construct rather than something concrete so, as you have found, when talking to different groups of people you get different responses. Rather than seeing it as weird, some may see you as being a bit eccentric and if you look at the dictionary definition of that you get similar words. Also if you think in historical terms many of our great developments would probably not have happened if some individuals weren’t able to think and see things in a totally new and different way. I realise that this is not the point of what you wrote but it is an interesting aside to see if as a social construct and one you cannot be altogether open about,
For me reading your response I just thought you are very aware of what you are doing and in your mind it is weird but in actual fact you are not hurting anybody, you are not spending money you don’t have and so on and whilst I can understand why you need a cover story and so on, in your case if someone suggests to you it’s odd behaviour you could just explain it was caused by the side effects of the medication - use it as an opportunity to educate if you like. It is of course quite different if you are for example, gambling away large amounts of money and risking everything that is important to you while at the same time so many don’t see it as being medication related and I personally think there is a huge stigma attached to people perceived as not being able to control whatever the issue is. People don’t think neurological condition they see a person who made bad decisions. We are often very quick to judge and up to a point we have to - we couldn’t function if we didn’t have some kind of shorthand to understand the world we live in.
I am no expert. I am basically writing off the top of my head what thoughts your piece prompted in me so I hope you will take what I have written with that in mind. Please do heed jason’s reply, we are here if you change your mind and want to post again.
In the meantime thank you for a thought provoking piece on a very serious and difficult area of Parkinson’s
Best wishes
Tot