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telling others.

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daffy
telling others.

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.

DivineR

Hi Daffy, 

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. 

daffy

Hi DivineR

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.

Jackson

Hi,

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.

Take care. J

 

frances

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!

F

daffy

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.

anonymous

 

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''.

frances

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.

F

 

 

daffy

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!

DivineR

Hi Daffy,

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! 

Jackson

Hi again,

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 

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