Hello, I'm new to all this on several counts. I've never dabbled in any social media before and was diagnosed with Parkinson's last year. Looking back it's pretty clear I've had it for a while, especially the symptoms not generally known to be related to the disease. I only found out about those after looking up Parkinson's uk In a way it way almost a relief to have an answer to all those things and the general feeling of "Not feeling quite well but not actually ill". I don't feel I have to "plough on regardless" so much now.
All the information on this website, and reading about others with the disease has been really helpful, made me feel less "alone". Family have been great but hearing from others in the same boat helps enormously.
In telling others of my diagnosis I have encountered a range of reactions, some not very reassuring.
The first being an friend of many years. She said "Oh my Dad had it. The nurses and doctors were wonderful - when he couldn't swallow any more he had....." Seeing my horrified expression her partner dragged her away. This was when I was just getting used to the diagnosis and had not learned much.
The second a customer who noticed my tremor asked outright if I had PD. I confessed I did have it. She said "Oh my friend has it. It got so bad she couldn't walk down the road on her own. Then she had medication and got her life back. She's off to Icland on her own next week. Don't you worry, you'll be fine." With that she patted me on the hand and left. I could have hugged her.
More recently Someone said of Reg's got that, you know Reg on the corner? Went into a lovely BUPA home last week.....I had felt fine up to that point but cut short the dogs walk and went home to brood.
This sounds like I spend all my time broadcasting the news of my diagnosis, I haven't told many but just wanted to say that peoples reaction makes such a difference to how you feel doesn't it.
Reading your post mirrors my own experience. What I found hardest and draining was telling friends who got upset for me. I'd then spend half the time building them up. Exhausting! On the forum you realise everyones journey (that word!) is different. So that's my answer to those who go into negative details. We can only get up each morning and live our lives as best we can.
That's true. Some days are better than others. Occasionally I even begin to kid myself that maybe my diagnosis was wrong - maybe I haven't got PD. Then my tablet alarm rings and I think of all the medication I now take. Still - could be worse. My daughter's father in law has had a form of MND for 30 years and is not at all well. So I can't really complain about my lot - onward and upward as they say. There are still a lot of people who don't know about my diagnosis but when the time seems right I shall probably say something.
I can also relate to everything you've said. My personal low was the friend who cried on my shoulder for 30 mins (literally) closely followed by the person who advised me that there was no point in me getting a promotion because "well, you know...."
A couple of years down the line and several colleagues still call it "your condition... " (often mouthed and not spoken) ... but they mean well.
Others, of course, have taken it in their stride and have been very matter of fact (easy to deal with) and then there's my friend's teenage daughter who, following some internet research into Parkinson's, offered to buy me cannabis - much to the consternation of her mother :-)
Dealing with people's reactions and preconceptions is surely tricky but I have to agree with DivineR, one day at a time in whatever way works best at the time.
I am 72 and doing well. I told one friend about my diagnosis, and she cried .I comforted her! It`s rather put me off telling people...At the moment I can get away with it, although maybe not for long. Obviously my husband knows but not our children. When it`s inescapable I`ll tell them. I really don`t want to be treated as an invalid until I have to. Our youngest, who is 38, asked us to go to a festival with her and her little one. We`ve accepted! I`ll let you know how I do!
Lovely to read your comments everyone, I've never knowingly spoken to any one else with PD before and it's reassuring to hear from you. Thanks
I got my husband to tell our children (35 & 33) the day I was diagnosed. Strange to say they had both independently already suspected I had PD,, as had I, but none of us said a word - the elephant in the room scenario They're both ok about it, I don't think they have much idea about it other than the tremor though. As far as they know the tablets are working end of...Anyway they have their own families and lives to lead so no point going further at the moment.
Although my son when out dog walking got into conversation with a man who said he had PD. My son told him about me and commented on the man's lack of tremor at which the man (well into his 70's) smiled and brought a cannabis home rolled cigarette out of his pocket. So maybe one day in the future...
My lovely husband was the most surprised with my diagnosis as he had secretly thought I was anaemic! He's wonderfully supportive, listens to my moans and anything I have to say about PD but won't read a thing about it himself.
I have learned now to recognise when I don't feel too good and back off without feeling guilty about being lazy. It pays dividends in the long run and stops me being snappy with others.
As everyone says the best approach is one day at a time, being a stubborn old cuss (64 this year) though it has taken me a while to learn how.
I think the hardest thing for me for the people who know me is installing in them is ''one day at a time'' that maybe because they still look at me and see me as they always have done that maybe a compliment to my medication,or it is days they see, as they generally don't see the days when i cant, i have to instal the understanding that ''one day'' might not be a specific day but a day when i can, for as long as I can, but I know when i have reached my limits for that ''one day''.
I`ve just come back from a really long walk with my husband. We have the usual week with grandchildren as we look after them when their parents work. That includes a year old baby. I try to remind my self constantly that it could be worse, even on a not very good day. This is all helped by having a supportive partner.
Cannabis is on the list. Not yet maybe, because I wouldn`t be a safe carer. But probably eventually.
Just back from a rare family event with cousins I only see once in a blue moon. I didn't feel I wanted them to know about PD as I dreaded the "sympathetic looks", I knew would be on offer. So spent the entire time hiding one hand behind my back (ever so casually of course)or held one hand firmly in the other from time to time, which works for a while. Everyone was so busy catching up on family news that I think I got away with it. It's no good putting a hand in my pocket as I've found that just exaggerates the tremor all the way up my arm to my shoulder, and that really shows.My husband seemed to think it worked. Result!
I understand you not telling people who you probably won't see for a while. It's funny though, alot of people aren't that observant. I sometimes feel very shakey and will think it's obvious but when I point it out to a friend, they haven't noticed. Of course it's on your (and your family) mind 24/7 while other people get on with their lives. That's life I guess!
All of these posts resonate so much! I once sat on my hand to keep it still for so long that when I finally had to move, it was numb and blue-ish - still, drew attention away from the tremor.
I find festivals fairly PD friendly, you can move a lot without drawing attention to yourself and most people aren't in a fit state to notice anyway :-) hope you enjoy it Frances. And if I was bold enough to wear a badge, it would say.......
.......'no I can't do it when I want to, I can do it when I can :-S' J x
I'm sure Divine R is right in that many people don't notice what seems so obvious to PD people living with it 24hours a day. That's quite handy to remember. I remember years ago my Mom telling me off for worrying about what others thought with the remark "What make you think anyone's looking at you anyway!"
Festivals sound like fun enjoy them Frances and Jackson.
I like the idea of a badge, nothing too serious though or it embarrasses people maybe"Parkinson's onboard" ?
Talking of grandchildren. My six year old grandson was showing me his toy dinosaurs and naming them "Brontosaurus, Stegosaurus, TRex, Fastasaurus...." I raised an eyebrow at the last one, quick as a flash he added "That one runs really quickly". Brilliant, that lad will go far.
Following on from all this I have hardly mentioned PD to anyone else around here. I have only actually told a few people - but word gets around doesn't it?
Anyway while walking my dog a few weeks ago I noticed another dog walker eyeing me strangely. We were on "Good morning " terms but that was all.
"I hope you don't think I'm being rude but...." he began and I quickly thought back as to what I could have done wrong recently - like you do.
"But some one told me you have PD."
I admitted was diagnosed last year.
"So have I. I was diagnosed 2 months ago"
And he was so relieved to talk to me, it was like opening the flood gates. He had been bombarded with tales of PD people in care homes, unable to get out and even advised to get a mobility scooter even though he can walk perfectly well enough!
With the result he seemed to be shutting himself down. Going out less, walking less out of plain anxiety, imposed on him by others. We had a little chat, I told him about parkinsons uk.
Over the next few weeks I noticed he was extending his dog walking route to it's previous length, standing straighter and often walking more briskly.
So all in all I am glad word did get around a bit and I was able to talk to him. And rather sad there are so many doom mongers about. We all know PD is not good news but that's no reason for people to go around scaring the living daylights out of folk.
I've had the usual 'but you look so well!' line. Or 'that's the most miserable disease!' Great, thanks for that, I'll continue with my day happily shall I?
People try to be kind but sometimes don't know the right thing to say.
Hi everyone...As some of you know its my husband with PD.
Diagnoised a year ago nearly. Very few people know and the ones who do either ignore it or make flippant remarks like "its only a bit of shaking" someone said because I work in care that "you will be ok cos your a carer already!"
It definately is the elephant in room....
My Husbands PD is very noticable now and he struggles with lots of things.
He has a very heavy manual job. He work colleagues are all younger and spend half their days on the phones on facebook etc. My Husband is old school and works hard therefore he gets lots of work put on him because the younger ones are lazy.
HR know about his PD due to his job involving driving,as does his direct manager.
In all the time he has had PD not ONCE has HR risk assessed him or asked how he is!
So he has decided on 18th August its a year since diagnosis,he is going to "come out" to everyone because of work. He is also going to ask to cut his hours at work.We are in the process of trying to get some help from the local PD nurse as he has not seen her since last November! Despite voice mails being left! If that fails we are off to see our GP for a supporting letter for him to take to work....
So I will let you know what the reaction is from people....
It's the right thing to do, telling everyone can be hard but hiding symptoms is even harder and stressful. It's a pity your PD nurse isn't more on the ball.
Cutting his hours can only help his symptoms. You said his PD is more noticeable and that may or may not be because he's overdoing it. I find if I'm stressed or tired I can hardly function but when I've done a class or given myself some time out, I feel so much better.
Sorry to hear how your husband is struggling just now. I think a lot of people think PD is just a bit of shaking. Tiredness and stress definitely does exacerbate the symptoms. As you say being a hard worker people do expect you to keep going whatever.
But it's not something you can "work through" like a cold. You just get more tired and start making mistakes, which adds to the stress - (and bad temper in my case, which was not fair on my poor husband as we worked together)
I had to learn when to stop for a break; it's not a sign of weakness. Sometimes a short break is sufficient, other times you just have to pack it in for the day. It hard to accept at first but it does help - and there's always tomorrow, when with luck you'll feel rested and ready for another go.
When you have PD you can pretty much recognise the symptoms in other people but before I had DBS done I would make light of it and take the mickey out of myself to put people at ease. In fact although I still have the Dystonic tremor I still poke fun at myself. Yes, I have side issues, everyone does and everyone is different but we take things one day at a time, some are good, some are bad but we strive on.
