Hello, my name is Ron and I am 60 years of age and was diagnosed with Parkinson’s in September 2020. I am married and have two grown up adult boys. I am finding it a bit difficult to get my head around and come to terms with the diagnosis and the long term affect it will not only have on my life but my family too. I am therefore seeking out more and more information to try to understand this disease and hence why I have joined to forum to read and understand other peoples experiences and journeys as we navigate the rest of our life. I have been on Ropinirole now for a few months and my rigidity of the hands a cogwheel has improved slightly apart from the arthritic like pains in the joints of the hands. I am also on Sertraline for depression and I have read already that the two meds don’t mix very well and so I will be discussing this with both my GO and Neurologist as soon as I can for possible alternatives. My sleep is not good often I am wide awake and cannot seem to get any sleep pattern whatsoever, I have tried sleep aids to no real effect. Discussions with GP/Neurologist again me thinks!
I have tried CBD Oil and that has not helped me either. Whilst I do not have ant motor symptoms apart from the rigidity I an suffering from the hidden Parkinson’s symptoms people cannot see.
Anxiety
Depression
Constipation
Urinating a lot
Lethargy
Apathy
Withdrawn
Lack of motivation not wanting to socialise
Feeling so tired all the time
Fatigued
Broken or lack of sleep
Whole body restlessness, Itchy feeling where you have to keep moving
Nauseous from the medications
Painful joints especially the hands
Difficulty in finding the right words sometimes
Lack of attention where I drift off any given subject
Night time cramps of legs feet
Difficulties with retrieving information especially if I am shown a process or procedure at work unless I write it down as an aid to memory I would forget!!
Recently I have also been aware that I have dreams that I cannot remember but seem to act out and talk and sometimes move about that can wake me up, if not woken my wife tells me I was dreaming, talking and sometimes would kick out, fortunately I have not kicked or hit the wife ( Phew !! )
I have been put on blood pressure medication now as I have high blood pressure 
On the whole not great feeling lousy and sorry for the long post and if you have reached this far in the post, take the rest of the day off 
Thanks for reading, have a great day and keep up the battle.
Waiting for the day when we can all say goodbye to this disease.
Cheers everyone, Ron
Hello Ron 
I’ve got to grips with my sleeping problem. If I find myself awake in the middle of the night I go on Google Earth and have a look round somewhere peaceful (I was in the garden at Alton Towers last night) for up to an hour. I find that this counts as ‘sleep’ and I’m not tired.
Hemyock,
Norfolk345 hi Ron, I am replying to your post because I can relate directly to your situation. Same age, diagnosed 2 yrs ago with little in the way of outward symptoms apart from a right hand tremor and a slight shuffle.
Like you I get fatigued, irrational anxiety, not wanting to socialise and trouble putting words together coherently, as well as some of the others you mention. These hidden symptoms are more difficult for others to relate to and are subsequently less easy for us suffering to express in words.
I am currently on Madopar which seems to keep most things at bay, but I find it frustrating that the non physical symptoms tend to be less analysed and therefore more difficult to know whether they are responding to medication. On a daily basis symptoms can vary markedly and I often have good weeks or longer periods interspersed with short bad spells.
I guess I’m not being very helpful but sometimes it helps to know you’re not alone. Try to stay positive and remember there are those who are far worse off than us. All the best Steve
Hi @Norfolk345, 
Welcome to the forum.
I’m glad to see that you’ve already received responses from members of the community. Parkinson’s affects everyone differently and many of the symptoms that you’ve listed are common among people with Parkinson’s. We have a lot of information on this via the newly diagnosed section on the Parkinson’s UK forum along info on the various forms of support that is available to you.
You can find this section here: Newly diagnosed with Parkinson's | Parkinson's UK
With regard to your sleep issues; I would definitely recommend you speak to your GP about this, you are also welcome to give our free and confidential helpline a call. One of our friendly advisers would be more than happy to speak to you in more details about your symptoms and offer more help and support. Please give us a call on 0808 800 0303.
Best wishes,
Reah
Forum Admin
Hi Ron. I am 66 and have been diagnosed 12 years. I am one of those PWPs that has never had a tremor but I do get motor symptoms and rigidity. Out of the 19 non-motor symptoms you listed, I have 15 of them. I too live in Norfolk and can highly recommend the services of the neurology nursing team. I visit a clinic regularly (every 6 months until Covid hit) and they can address most of your concerns. Their proposed medical treatment changes are co-ordinated with your GP and consultant and their advice is encouraging. I remember my first visit - I burst into tears because I was so glad just to have a sympathetic ear. If you haven’t been referred to the nursing team, you would need to go through your GP. When I was diagnosed, no one mentioned these specialist nurses and I only found out about them through the PUK website. As the years have gone by, I have explored different therapies for the worst of my non-motor symptoms and some have worked and some haven’t. The most important changes I’ve made are to do vigorous exercise when you can manage it, keep moving as much as possible, rest during the day if that’s what your body is telling you and ask for help (either from a family member or a health care professional). I have never been to a local support group but it seems many PWPs get a lot out of them. I think joining the forum isn’t an easy step to take so “well done, you”! Best wishes.
Hi Ron
I am 55 and lived with the illness for 8 years, Parkinsons UK are a good website and you can receive their quartley newsletters, alot of the hidden symptons can be a side effect of the drugs and can be worse then the illness itself, have you read the leaflet on side effects, a good facebook group is called Start living Today pd, we share alsorts of things, funny things, just like to sound off things, experiences, etc. Do you have a PD community nurse who you can phone and chat too, get your GP to refer you to one asap, if you have one in your area. The more stressed worried or angry you get, it can make your symptons worse, exercise and eating healthy and regular and just try and relax abit more will help control things, certainly make a note of all things you are experiencing… Life just becomes difference with Parky, it doesnt end. A good book called So Ive got Parkinsons disease by Terry Rummins gives you an insight to the illness and is also a good read for family members, you will have good days and bad and if you over do it one day as you felt good it can take it out of you the next. Ask for a physio so they can give you exercises to do, I find the more I keep moving the less ridigit I become, find a hobby to keep your mind occupied so you are not transfix on the illness, that way you want notice it so much.
Find a local group in your area and join that and talk to others about your experiences, dont worry about what others think, just be you, tell them you have parkinsons, it give them more of an understanding, ask for help and do what you can do, when you can. On a lighter note, my boys are grown up 21 and 28, when I start shuffling down the hall way they say in a scarey voice " here comes mummy" I do laugh and thats all you can do. Remember the saying I may have parkinsons but it doesnt have me. Dont try to understand the illness, you want win, just try to live with it, and take each day as it comes, just abit of advice if you drive, dont forget to tell the DVLA and your insurance company. Good Luck
Hello Norfolk345 aka Ron!!
I hope you have found the replies so far of help, I particularly liked Lemon’s creative solution which I might well try myself sometime lol. Your reasoning for joining the forum I found interesting because to my mind it is rather unusual. I joined the forum a few years back and most when newly diagnosed, quite reasonably are looking for answers ie want to know what is going to happen to them etc. It’s my personal opinion that this is a question that almost has no answer, at least not one that is as clear as abc and more than once have I struggled to find a way to give a helpful reply. You say however that you are looking to understand Parkinson’s which gives me a far easier way to give my view without having to start by effectively saying ‘I can’t answer your question because only time will tell’ although that of course does apply. So before I bore you any further I will get on with it!
Please be clear this is my personal opinion and what I have found works for me. If it helps your understanding that’s great but equally if it doesn’t then that is equally valid. For me, the goal is to find a way to live with Old Parkie in as positive a way as you can, for as long as possible with as good a quality of life as you can get at any stage. Problem is everybody has to find their own path because as you will read time and again it is a very individual condition and creative solutions such as Lemon’s or the supportive words and encouragement of Hemyock and Jeanine or Reah signposting you to other resources all have their place but the actual or real ‘answer’ comes from you. For me I think that some of it depends on the type of person you are, in simple terms are you a glass half full half empty sort of person, do you battle to find answers where something drives you on such as anger or frustration, do you need to believe there will be a cure, that sort of thing. There are no right or wrong ways only what works for you.
For me and for a lot of reasons not all directly linked to my Parkinson’s but take into account my own life experiences etc., is to be positive about the situation I find myself. That doesn’t mean I want Parkinson’s any more than anyone else, of course I would rather not have it, but since I have and as things stand there is no cure, my starting point is to take that as a given and start from there. The only certainties I have are that my Parkinson’s will progress and that I don’t know how or when I therefore waste little time worrying about my uncertain future. My focus is on today and immediate future. I forward plan only as much as I need to keep life turning and have therefore done what I can so as not to be a burden on my family and then deal with the challenges Old Parkie throws up. It’s not infallible, I have my moments but by and large it works for me. It’s not easy and is easily misunderstood. Being positive demands that I be honest about what is happening, what I am feeling, accepting when I need the support of others, thinking creatively around any obstacle put in my path etc and I absolutely never give Parkinson’s star billing - I am Tot first. I happen to have Parkinson’s, it doesn’t have me.
Whenever I write a reply of this type, which is pretty often, I do wonder if it is very helpful. It has little in the way of concrete actions or answers and could be seen as nothing more than a theoretical argument. It is something that is not easy to explain and the best I can do to put it in a nutshell is to say that for me it is essential I keep a positive mindset a main component of which is a positive attitude. In December it will be 12 years since diagnosis. This approach has worked for me. I am doing ok and managing with very little assistance. It’s not for everyone.
Parkinson’s is a very complex, widely misunderstood condition with no cure. The answer as I see it is to seek information and advice as you will but that in the end the answer will depend on your view and attitude towards your Parkinson’s for you and the coping strategies that make sense to you.
This is a bit of a clumsy reply in part so hope you are able to extract the gist.
Best wishes
Tot
PS there is humour in your post, to me that’s a good sign even if black humour. It can be a powerful tool.
Hi Ron from a neighbor in Suffolk.
I am now 18 years into my relationship with the unwelcome visitor and have always tried to keep positive and not to let it get the better off me. I am married with two grown up daughters. My husband is wonderxxful and helps me say motivated to go cycling and walking… I am convinced keeping active us the key to being able to live a.near normal life. Don’t get me wrong,; I have very bad days when I can hardly walk and feel very low but I always bounce back.
You don’t appear to be taking any Levadopa which surprises me. I. Know many consultants delay prescribing this because it does eventually stop working but it does make a huge difference. I went onto sinimet after about 3 years and it was fine until this year when it started to become less reliable. I have changed to Stavelo and everything is fine now
I also take Madopar, resagaline, and ropinerole.
I used to have problems sleeping. A lot of doctors are reluctant to prescribe sleeping tablets but my consultant takes the view that they are part of my overall treatment and prescribed Zopiclone. I take half a tablet every night and sleep really well.and have no side effects. I would suggest you ask your consultant about this.
I think you have to accept ythat you may need a lot of medication to fight PD effectively
Good luck.
Janey
Forgot to say. I also have regular reflexology sessions which I think really help.
I also see my consultant privately which means I can see him whenever I want rather than set.twice yearly appointments. I also see the Parkinson’s.nurse twice a year. If you are in a position to go private I would thoroughly recommend it.emphasized text
Hey Steve thanks for the support
Always good to know we’re not alone
Sorry it’s taken so long to respond but had difficulty in accessing website for some reason I understand
Appreciated your time to respond thank you
I’ve been diagnosed 12 years and in that 12 years I’ve tried to find out just what Parkinsons uk actually does and all I can see is a con they don’t actually do much for people with Parkinsons and if you look at what they have given your money actually makes you laugh because to me it’s about people who think they no about Parkinsons who no nothing and go on there research site or ask them what they have put money into over the years and most of it is total nonsense we as people with Parkinsons want it to we’re it’s need like care and better consultants and consultants that listen and don’t think they no better than because why’ll they have a degree I think I no better as I’ve been to the actual school of Parkinsons for 12 years, don’t get me wrong there is some good ones but not that many. To many have a chip on there shoulder. And what gets me about the medical profession is if I was that bad at my job I’d lose it these people are never held accountable. Now to me if people are making complaints then it should be done by an independent body that come from working class people not the people who think working class are something to walk on. Anywhere back to my point as anyone been to these Parkinsons uk open days in there town. If you have ehat did you think did you ask questions at the stalls and just get a leaflet stuck u set your nose and came out and thought what a waste of time. Just what are they about to me it’s an absolute disgrace that all the money that is given for Parkinsons doesn’t go on to help people with Parkinsons it just employs people who think they no what people with Parkinsons need. Ask yourself this as anyone ever got in touch with you from Parkinsons uk and ever ask asked about your Parkinsons so what do the base there research on. You think people like would be a valuable asset to research having been only 44 when I was diagnosed but I’ve never had so much as a letter or any kind of support in 12 years. I’ve had to fight this disease on my own. This will be lucky to get up on the forum because they have blocked my comments before because they no it’s true what I say. How many people who nothing about Parkinsons but have a degree in talking rubbish would lose there jobs. So ask yourself what ad Parkinsons uk ever done
Hi @Ken2468, 
Thank you for sharing your thoughts with us.
I’m really sorry to hear that you’ve been dissatisfied with the work we have been doing to support people with Parkinson’s. I’m not sure how much this will alter your views, however, I just wanted to reassure you that we’re close to major breakthroughs. Funding the right research into the most promising treatments, we get closer to a cure every day.
Until then, we’re here for everyone affected by Parkinson’s. Fighting for fair treatment and better services. Making everyone see its real impact.
Guided by the Parkinson’s community, we’ve shaped our plan for 2020-2024 and I would encourage you to read our strategy here for more information on this.
We really appreciate your opinion/ feedback on our work as we are always looking at ways that we can improve as a charity. If you’d like to take this further, we have a dedicated feedback department that can address your comments, compliments and complaints:
- Email [email protected]
- Or call 020 7963 9324
Best wishes,
Reah
Well Ken parkisons UK must be some use to you otherwise you would not bother to still be a member and check out the forum.
I would imagine imagine Puk do a lot more than you realise. Setting up this forum for one where folk can chat to each other and advise each other too!
I’m not sure why your rant against Parkinson’s uk was sent as a reply to me but since I read it I will say the following.
In one sense I can understand where you are coming from as even though I’ve only been diagnosed 3 years there have been times when I have felt very alone, so you would have had at least 4x that. On the other hand there are a lot of good people out there trying to raise money for research and if they don’t have pd you can’t blame them for not understanding what you are going through. Before I was diagnosed my daughter worked for Pd uk as an events organiser and always tried her hardest along with many others some of whom as volunteers didn’t get paid. Just because you’ve had some bad experiences don’t categorise everyone in the same boat. Come on Ken you’re better than that
wow