Hello Adewrigs and welcome to the forum.
On reading your post two things immediately came to mind but I wasn’t sure which way round to put them because in a way they are linked, First it was that your family history will give you some understanding of the condition that many do not have when newly diagnosed, indeed you wrote that it was something you were watching out for. The second is that you now have a formal diagnosis of Parkinson’s yourself. There is a subtle but nonetheless distinct difference between having some knowledge and understanding of Parkinson’s and having it yourself. While you will undoubtedly recognise some elements that you may experience as similar to those of your relatives, it doesn’t mean you will react in the same way or that they will have the same impact. What you are is a unique individual whose experience of Parkinson’s will be uniquely yours.
You have only had your diagnosis a short time and like many at that stage your brain goes into overdrive with all sorts of conflicting thoughts and emotions as you try to find out what your future may look like or indeed if you can see any future for yourself. at all. In one way or another we’ve all been where you are now and have come out the other side, and you may not believe it at the moment but so will you… It takes time, I can’t say how long because it’s your time.line and will take as long as it takes. Medication is often a bit trial and error to find the routine that suits you and it does take time to get used to the diagnosis but it is good that you are already aware of some things, notably the loss of your career. It sounds to me as if your work was important to you and that you were good at what you did which gave you a certain status that was important to you as a person. That may not be wholly accurate of course as I know nothing of what your work entailed but I suspect you will see some truth in that somewhere. What you are experiencing is similar to a bereavement, a grief process common in the early days when life has dealt you a hammer blow and the life you saw for your future seems to be no more, it feels like everything will be different. Up to a point that is true, Parkinson’s is life changing but in most it is slow moving and there is time to change and adapt in such a way you can still have a quality of life and a life of worth in which you will be able to make a positive contribution. I know this is not a lot of help in terms of practicalities but my feeling is the conflict in your brain is the big issue for you being pulled every which way with no concrete answers. Give it time, don’t be so hard on yourself, and don’t try to sort out everything at once. As things get sorted, as you get used to the diagnosis and find ways to cope and manage that which seems too much just now you will start to come into a calmer patch and when the time is right for you join us all on the forum who survived the early days, lived to tell the tale and learnt that Parkinson’s is not a one way street down to a black hole unless you choose it to be - and I don’t believe that will be your choice.
Tot
Hi, I’m 62 years old, male and I felt there were issues back in April 2022. I was out and about, I was cold and felt a tremor. I initially ignored it and put it down to being cold and shivering. It appeared that I could control it. A few weeks later found the tremor again and went to see the GP. We had a frank discussion and I voiced my concerns and what it might be i.e. PD and my GP was non-committal, only to be expected. One of my concerns was the tremor is in my left arm and being left-handed it was a worry. She did put me on a referral to a neurologist but I had not heard anything for 3 months or so. I recognised the increase in tremor activity, poor sleep patterns, mild stiffness, constipation so went back to the GP. Saw a different doctor who escalated the Neuro referral. Got to see a consultant neurologist in late October, referred for a Dat scan, completed in early December and a planned follow up in early Feb '23. Also prescribed Sinemat 3x a day. Felt the meeting was great. I took my wife with me which helped a lot. By coincidence I watched the documentary with Jeremy Paxman which personally I found interesting and helped when I saw the consultant.
Feeling OK but suffering with postural dizziness and poor hand writing later in the day and of course the tremor. Otherwise work is OK, memory seems fine. Getting vivid dreams that are causing a few issues at home, why are they always violent?? Going to start a daily journal, well most days I hope. Not sure if or how it will benefit me or others but at least I can record my thoughts etc.
Glad I’ve found this forum and will be looking back regularly for information and shared experiences if I can.
KeithB
Hi Keith, my husband(65) is 6years into his diagnosis. Vivid dreams have been a big part of his symptoms . They often involved a lot of shouting and pushing and arms flaying around which was troublesome( to me !) Lately they have involved a lot of laughing which is much less bothersome ! We are retired so its easier to navigate all that PD is throwing our way, its not easy, but on good days we look for the 'bright side of life '. This forum helps us both. Best wishes to you in 2023.
Hello My name is Jane I am 59. It was almost overnight that I noticed a change when my Left hand curled into a stiff claw. I had suffered with pins and needles, tingling and numbness in both hands for quite a long time. I hoped it would go away but after 4 months decided to see the GP. This was in 2021 as you know it was difficult to see a doctor at that time (still is!)
Initially the GP thought I had a trapped nerve in my neck, the ring finger stiffens, locks then snaps a bit like Trigger Finger though apparently it’s the wrong finger. So 3 X-rays, 3 MRI’s, Stroke Assessment no diagnosis. In February 2022 my Left leg then started to play up. Walking was difficult and painful, my knee would lock and go into a cramp and gave way one day resulting in me on the deck! GP thought I’d had a stroke. The Cardiologist didn’t think I’d had a stroke but referred me to a Neurologist who ordered a plethora of tests, blood, urine, MRI, EMG, SPECT scan.I was told my case is Unusual, I took that to mean they didn’t know what the problem was. However my father had CJD and his father had PD so this made me ‘interesting’. Orthopaedic Consultant didn’t think I had a trapped nerve in my neck so discharged me but referred me to Hand Therapy, this is 14 months since the first symptom began. So I don’t produce Dopamine, I have been prescribed Sinemet and Baclofen though the Neurologist didn’t think it would help as She wasn’t convinced I had PD. However, I am much more like the old me My thoughts are clearer, my mood is brighter and my motivation and energy have increased. The leg pain and restlessness ( sorry forgot to mention this) is more under control though not cured. I am still waiting for some of the test results and a 2nd Opinion next week. I’ve had one hand therapy session and so the exercises keep me busy. It was a relief to have a diagnosis even if it isn’t definitive. I want to do what I can for as long as I can. I still work for myself as a Colon Hydrotherapist and live with my husband who has been absolutely wonderful looking after me. We laugh when he has to get me out of my coat or top when I get stuck. He’s not well either but we muddle along. I think this forum could be a great help and support. Sorry for the long ramble it’s the first time I’ve written about me.
Hi @Jane04, 
A warm welcome to the forum. 
It sounds like you’ve had quite the journey with your health and trying to get a diagnosis; unfortunately, this is quite common for people with Parkinson’s. Thank you for sharing your story and joining our community - we are happy to have you onboard. 
We have a great community of members here who I’m sure you’ll be hearing from at some point, however, in the meantime, please feel free to explore the forum and join in on any conversations that relate to you. You can also visit the Parkinson’s UK website for more information on Parkinson’s that I’m sure will be helpful to you.
Best wishes,
Reah
Forum Admin
Hi, I’m Sheena and my 86yr old dad was diagnosed on April 3rd this year.
Its been a very difficult 10 months for him, me and my family.
My mum died suddenly Aug 30th last year aged 88. My parents had been together since they were teenagers. Everyone, including mum and dad himself, thought he’d be the first to go, so it was utter shock. Mums funeral was on sept 21st. I found my middle sister (she was fostering her 5yr old g/daughter) very ill in bed on 27th sept and we had to make the decision to switch off her life support and she died on 8th oct. Her boyfriend and I looked after the little one until a new placement was found (fabulous new family). On top of all this i was getting abusive texts from my passed sisters daughter (I’ll say no more on that subject) and looking after my dad too.
I live in Wales, and what i thought would be a few weeks away from home to sort everything out, has turned into 10 months so far and ongoing, sleeping on a settee in my dads house. My dad lives in Staffordshire.
Other family live in Devon and either work or are too ill to come up and give me a break.
I’ve found that because i live in Wales, i can’t get much support, because dad is in England. I can’t move him close to me, as he’s only known his house, my mum was born here, and i don’t blame him for not moving.
I haven’t worked for the last 4 years due to health and mental issues.
I feel so sorry for dad, and i feel guilty because I’ve managed to arrange a caravan for him and my older sister (she lives in Devon, and is ‘ill’) to stay in, which is also close to where she lives, while i go home for a week.
My dad doesn’t seem to want to help himself in anyway. He’d be quite happy to sit and be fed. I know he’s depressed and grieving, but he won’t do anything for himself. I’ve tried to teach him how to use a microwave, encouraged him to make himself cuppa’s etc, but he just won’t try. He a frequent faller, a lot of them due to him doing silly things, like taking off his trouser braces before he gets to the bathroom, resulting in trousers around his ankles.
These things i used to chuckle at, but now, they irk me. He’s still mentally aware.
I feel i’m one step away from a breakdown. I haven’t been able to grieve, as my brain tells me I’ve got to be strong for dad. I’m not coping well at all, especially the last 3 weeks or so.
Sorry for the ‘woe is me’ post. I just needed to be heard i think.
Thankyou for listening.
Hello Sheena, and welcome to our community forum.
We’re very sorry to hear of the current challenges facing you and your father. While you are sure to hear from our community members soon, we can assure you in the meantime that you are not alone in your feelings. We would encourage you to reach out to our free and confidential helpline on 0808 800 0303, as they offer a variety of assistances and can in particular help you find resources in your area. Please don’t hesitate to reach out to them. As our community can attest, the advisory team are wonderful and ready to lend an ear and a hand.
With our warmest welcome,
Jason
Forum Moderator
Hi All,
I was officially diagnosed with Parkinsons disease in March 2019. In retrospect I have had symptoms since 2017. I havent been on this website for quite a while as most postings are from spouses/carers write about how challenging it is to put up with people with P.D. their partners being lazy, mood swings, lethargic, bad tempered etc Al doom and gloom. Part of having P.D. is having all of these symptoms which are outside of the sufferers control and it is not intentional.Since finding out I had P.D. I have gone through the stages of grief. But just to let people know the Anxiety can be crippling I Hate being a passenger in a car, You cannot get motivated to do exercise, its not being lazy its all part of the disease. Until I had P.D. myself I had absolutely NO IDEA the detrimental and often soul-destroying effect it can have on your mental health and sheer frustration when you lose lots of abilities that most people take for granted. I sometimes wish in a nice way you could programme peoples brains to show non -sufferers how to live with the condition just for a day. Even now I feel guilty and ashamed about telling people I have the disease, even giving a fake name on this website, so please I know its frustrating but you would give more time and patience if the one you loved had terminal cancer. I know you dont die of P.D. But it messes with your personality sometimes. Often the only thing that keeps me on an even keel is working as a staff nurse for the N.H.S and caring for people with P.D. and M.N.D. and thanking God I dont have the latter. If only people had the same amount of input that diabetics have , I wish there was s specialist Parkinsons disease nurse at G.P,s that you could ask questions to inbetween having 6monthly or annual check ups with your Neurologist, or up to date research data. I find it very lonely at times, working full time having someone to talk to and compare notes. I suppose I am a bit in denial being very keen reading literature on how the Microbiome affects peoples health and the gut/brain link and how peoples symptoms have been improved with specialist diet.
Thank you for listening to me rant. Dont forget to be Kind if anyone you know has P.D. they often cant help being nasty, paranoid etc sometimes Heres hoping for a cure for this disease very soon, just because some peoples symptoms arent always noticeable does not mean they are not struggling inside. x
Hello my name is Bella1 it’s the first time for me on here, it’s my husband that has pd he’s in his second year but looking back he had symptoms for a good few years . We’ve been married for 40 years and it’s heart wrenching to see him have to relay on me for most things example cutting his food up , personal hygiene, ext but we plod on
Hi Belle,
We just wanted to take a moment to welcome you to our community forum. In addition to the wisdom and experience shared by our members, you will find just a lovely group of caring people. While we do not minimize the challenges you and your husband are facing, we can assure you that you are not alone.
Please have a look at this section of our website, for carers: Caring for someone with Parkinson's | Parkinson's UK. And do not hesitate to reach out to our helpline, as they offer helpful resources (including local support) for carers as well as people with Parkinson’s. You can reach them on 0808 800 0303, and the call is free and confidential.
Wishing you the best along with our warmest welcome,
Jason
Forum Moderator
Hello Amelia37
I have just caught up with your post of some three weeks ago and can completely understand why you have written as you have. I also have Parkinson’s, I was diagnosed in 2009 and in December I would have had the diagnosis 14 years.
There is a lot of truth in what you write on all counts. It is true many posts are from carers struggling to cope with someone who has Parkinson’s and it can feel like they ‘forget’ that it is not the person with Parkinson’s being difficult rather than a consequence of having the condition.
It is equally true that living with Parkinson’s can be everything you say it is and to say otherwise would simply not be true. Over the time I have been contributing to the forum and as I have frequently said, everyone has to find their own way to live with Parkinson’s and there as many different ways of doing that as there are people who have it. Your post gives a very graphic account of one way of living with Parkinson’s. It’s what I call battling all the way and if that’s what you need to do then that’s fine. I make no criticism of that at all.
My own way is very different to yours. I decided that once I had my formal diagnosis I would be open about it. I prefer people to know rather than make inaccurate guesses. Parkinson’s is not a well understood condition but by telling people I have it I may be helping some people to understand it a little better and it also means I have more control over how people interact with me - others take their cue from me and family and friends are well used to that.
The second way my way differs from you is I very early on accepted Parkinson’s as part of me. It’s a fact. As things stand there is no cure. Fact. So why waste energy fighting something I can’t change. That doesn’t mean I’ve given up or given in to it, rather I challenge the obstacles it throws in my path. As I have said many times, I never give it star billing - I am Tot first and I happen to have Parkinson’s. I don’t waste a lot of time and energy lamenting what I have lost but instead concentrate on what I can do and have and I look for ways to do things differently rather than not do them at all. Most important of all is to stay positive and I work hard to maintain this - shutting out the strong, bossy and overbearing Parkinson’s brain in favour of the quiet strength of my non Parkinson’s brain.
Don’t get me wrong, I have my moments of course I do, if there was a way to get rid of Parkinson’s I would take it like a shot, no coping strategy comes with a 100% guarantee and given the unknown future we all face my positivity may not last the course. It has served me well for nearly 14 years however, I live very much in the present and believe it or not am quite happy with my lot. I also believe that in living with Parkinson’s as I do and being open about it is the strongest contribution I can make to educating others whatever their connection with Parkinson’s or even if they have no connection at all - maybe, just maybe it will mean some people will do as you wish (quote)
Dont forget to be Kind if anyone you know has P.D. they often cant help being nasty, paranoid etc sometimes Heres hoping for a cure for this disease very soon, just because some peoples symptoms arent always noticeable does not mean they are not struggling inside. x (unquote)
As I said Amelia37, this is in no way a criticism of how you live with your Parkinson’s, I just thought you might be interested in hearing an alternative that is very different to your own
Best wishes
Tot
Hello Belle1
Just thought I would add my welcome to Jason.mod’s. It is hard to watch someone you care about struggle but after 40 years you will know each other very well and I hope that helps. The forum is here 24/7 come back whenever you need or just to say hello and let us know how it’s going.
Best wishes to you and your husband.
Tot
Hi Tot,
I am new to the forum and read your post with great interest, I agree with your coping strategies but find it difficult to remain positive and become motivated.
I was diagnosed in 2021 but now realise that I had symptoms some years beforehand. Sadly my wife left me a couple of months before my diagnosis, she had suspected that I had Parkinson’s for a while. As you can imagine I was devastated and still am. I’ve been on my own for over two years now and find it a very lonely existence to be honest.
I joined a local Parkinson’s group where we have a chat and do exercises, its a nice break for a couple of hours.
I suffer with a tremor in my left arm along with painful muscle spasms. I also suffer with anxiety even doing the smallest tasks such as shopping. I have completely lost all motivation to do anything and have depression for which I’m taking medication.
Some days are better than others of course but none are really good.
I’m looking forward to reading more post on the forum.
Best wishes
Hi, I’m Podd. I got diagnosed with Parkinson’s about 6 months ago. I retrospect I’ve probably had it for far longer without realising. Still trying to come to terms with it, the unpredictable slowness and fatigue particularly. The medications help but I’m stll trying to find the right balance. A similar experience to everyone on this forum I would guess.
Hi. I’m new to the forum but have had PD for quite a while now. I was diagnosed in 2014 at the age of 32. I wasn’t expecting it at all so it took a long time for me to accept the diagnosis.
For the first few years the medication worked really well at controlling my symptoms. Recently things have become more difficult as I have started having more off periods and side effects from the medication.
In the past few months things have been tough as I really had to deal with having PD - up until then I had been trying to carry on as if nothing was wrong. I hadn’t told anyone at work about my diagnosis but it reached the point where I needed to as I was struggling to get through the day at work and the stress I was putting myself under was making things worse.
My main problems are slowness, rigidity and sleep (I am usually unable to sleep for more than a few hours at a time). I sometimes get dystonia and dyskinesia - these have only started this year. I think the main issue I have at the moment is just how much things fluctuate from day to day & throughout the day.
At the moment I’m trying to increase the amount of exercise I do and reduce stress in my life to try to manage my symptoms as best I can. I’m also looking at the next steps in treatment (probably DBS).
I’m hoping this forum will help me connect with others who are in a similar situation.
Best wishes to you all!
Hi Paul,
Happy New year. I too found it difficult to tell anyone at work. apart from being in denial I felt almost ashamed of having Parkinsons, I went through the stages of grief when first diagnosed and have only told a few people at work, although I am sure human nature being what it is a lot of people know. please carry on with exercise wish I had before my symptoms had worsened, research has shown that it can prevent symptoms worsening and can sometimes reverse them for short periods.
My main problem at present is severe anxiety when being a passenger in a car, I am ok on public transport, so am in process of contacting talking therapies to help control this, wishing you the best of luck with DBS.
with best wishes
Ann
Hi Tot,
thank you for your words of wisdom, on reflection I was going through an angry stage when I posted my thoughts and feelings. My neurologist whom I trusted has retired and his replacement is less experienced has not gained my trust as we dont seem to agree on a few matters, so I feel very insecure at present. Hopefully time will change this. I dont know if you or anyone out there has any information on cold water therapy? I would love to try cold water swimming but a recent holiday i greece (september 2023) swimming in the sea took my breath away and I almost had a panic attack, my new neurologist said he had read an article regarding this and would e-mail me, this was in November and alas not heard from him. As cold water therapy is supposed to help with anxiety I was keen to try it as being a passenger in a car makes me so very stressed (I am ok on public transport but not always practical to travel this way),
with Best wishes for a Happy New Year
Amelia aka
Ann
Hi Amelia/Ann,
Thanks for your message. I had my initial DBS assessment last week and the results were good so I think I am going to go forward with surgery later in the year.
I hope you have managed to get some help with your anxiety. I have also had problems with anxiety over the last year or so and have just finished a course of talking therapy - it was quite a long wait to get this. My neurologist also prescribed propranolol for use in particularly stressful situations which does seem to help (although I don’t use it very often).
All the best
Paul
Hi all, not sure if I’m doing this correctly. My mom was diagnosed in January this year and I am trying to support her as best I can although I live 3 hours’ drive away. My other sister lives in Spain but between us we are trying to do our best for mom. We are just trying to get her care switched from Social Services to a private company but it has taken a long time and only now have I receive the direct payments forms etc which seem quite confusing. It would be great to speak to others in a similar situation.
Hi BGriff,
It’s highly likely that the community will have some experience to share on this, but just as an additional resource, our helpline helps with these kinds of paperwork questions. You can reach them on 0808 800 0303.
With our best wishes,
Jason
Forum Moderator