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 itās the wrong finger. So 3 X-rays, 3 MRIās, 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 Iād had a stroke. The Cardiologist didnāt think Iād 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 didnāt know what the problem was. However my father had CJD and his father had PD so this made me āinterestingā. Orthopaedic Consultant didnāt 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 donāt produce Dopamine, I have been prescribed Sinemet and Baclofen though the Neurologist didnāt think it would help as She wasnāt 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. Iāve had one hand therapy session and so the exercises keep me busy. It was a relief to have a diagnosis even if it isnāt 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. Heās not well either but we muddle along. I think this forum could be a great help and support. Sorry for the long ramble itās the first time Iāve written about me.
Hi @Jane04, 
A warm welcome to the forum. 
It sounds like youāve had quite the journey with your health and trying to get a diagnosis; unfortunately, this is quite common for people with Parkinsonās. 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 Iām sure youāll 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 Parkinsonās UK website for more information on Parkinsonās that Iām sure will be helpful to you.
Best wishes,
Reah
Forum Admin
1 Like
Hi, Iām 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 heād 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 (Iāll 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.
Iāve found that because i live in Wales, i canāt get much support, because dad is in England. I canāt move him close to me, as heās only known his house, my mum was born here, and i donāt blame him for not moving.
I havenāt worked for the last 4 years due to health and mental issues.
I feel so sorry for dad, and i feel guilty because Iāve managed to arrange a caravan for him and my older sister (she lives in Devon, and is āillā) to stay in, which is also close to where she lives, while i go home for a week.
My dad doesnāt seem to want to help himself in anyway. Heād be quite happy to sit and be fed. I know heās depressed and grieving, but he wonāt do anything for himself. Iāve tried to teach him how to use a microwave, encouraged him to make himself cuppaās etc, but he just wonāt 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. Heās still mentally aware.
I feel iām one step away from a breakdown. I havenāt been able to grieve, as my brain tells me Iāve got to be strong for dad. Iām not coping well at all, especially the last 3 weeks or so.
Sorry for the āwoe is meā post. I just needed to be heard i think.
Thankyou for listening.
Hello Sheena, and welcome to our community forum.
Weāre 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 donāt 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 itās the first time for me on here, itās my husband that has pd heās in his second year but looking back he had symptoms for a good few years . Weāve been married for 40 years and itās 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 Parkinsonās. 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 Parkinsonās, 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 Parkinsonās and it can feel like they āforgetā that it is not the person with Parkinsonās being difficult rather than a consequence of having the condition.
It is equally true that living with Parkinsonās 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 Parkinsonās 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 Parkinsonās. Itās what I call battling all the way and if thatās what you need to do then thatās 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. Parkinsonās 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 Parkinsonās as part of me. Itās a fact. As things stand there is no cure. Fact. So why waste energy fighting something I canāt change. That doesnāt mean Iāve 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 Parkinsonās. I donāt 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 Parkinsonās brain in favour of the quiet strength of my non Parkinsonās brain.
Donāt get me wrong, I have my moments of course I do, if there was a way to get rid of Parkinsonās 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 Parkinsonās as I do and being open about it is the strongest contribution I can make to educating others whatever their connection with Parkinsonās 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 Parkinsonās, 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.modās. 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 itās 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 Parkinsonās for a while. As you can imagine I was devastated and still am. Iāve been on my own for over two years now and find it a very lonely existence to be honest.
I joined a local Parkinsonās 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 Iām taking medication.
Some days are better than others of course but none are really good.
Iām looking forward to reading more post on the forum.
Best wishes
1 Like
Hi, Iām Podd. I got diagnosed with Parkinsonās about 6 months ago. I retrospect Iāve 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 Iām stll trying to find the right balance. A similar experience to everyone on this forum I would guess.
Hi. Iām new to the forum but have had PD for quite a while now. I was diagnosed in 2014 at the age of 32. I wasnāt 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 hadnāt 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 Iām 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. Iām also looking at the next steps in treatment (probably DBS).
Iām 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 donāt use it very often).
All the best
Paul
Hi all, not sure if Iām 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 hoursā 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,
Itās 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
I am still trying to understand this forum - I am not sure who receives messages and what I should do to introduce myself
Morning Jim ā¦ You have done the right thing. Everyone can read what you have just said. Yours is the most recent comment so everyone can read it. If no one comments then your message drops down as other messages get replied to. As I have commented your message goes back to most recent & everyone can read it.
Best wishes
Steve2