I was diagnosed with EOPD nearly three years ago at the age of 45. My doctor thought I had Huntingdon's - so when the Specialist told me it was Parkinson's I was one of his rare patients to be really happy about it
It took about six months to come to terms with the diagnosis - I also think at first you get information overload about it - so hang in there.
I haven't changed drastically over the last three years although I generally ache more and get tired easily.
I still work (but only 4 days a week, instead of 5) and that seems to help. My employers were not very supportive at all - even telling me that it was inconvenient I have Parkinson's - but with help from Parkinson's UK they are now realising what it's all about and a new manager has certainly helped.
If you need someone to talk to me, by all means get in touch.
Just an update folks.....I have just spent the past week in a psychiatric ward....not much further forward than last time...a couple of good things have come out of it as a result. One I am not suffering psychosomatic delusions and two my brain ct scan showed up nothing by way of tumours.
I do so wish that GP's would look at real people who suffer PD before looking at a script they find in outdated journals.....well that's my soap box rant over for the day just in case the men in white coats come to take me away...he. he..ha...ha
Hello and welcome to the forum Nostramo, i was dx 11 years ago when I was 53. it took some time for me to accept things but I guess life goes on. My symptoms have taken a real turn for the worse over the last 12 months and its almost like having to come to terms with yet another stage of the condition.
I'm sure that you will find lots of support and advice here as people are very knowledgeable about PD. I hope to meet you around the forum some time
Thanks for all the supportive messages. Haven't been here for a while...the last few months have felt more like a bad film than my life but I guess it will take time to come to terms with this news. Hope you all had a good start to your year!
Hi there I can appreciate where you are, I'm still like a cat In headlights some days but getting there. Keep taking your not alone. :) where all here for each other.
Hello and welcome to the forum everybody, and welcome back Ray of Sunshine. i can't tell you how goos it is to see that your still able to join us.
I am confident that you will all gain from your experiences here as there are many people that have long term personal experiences to draw on and they are very willing to share with others.
I was dx 12 years ago and whilst my condition is worsening, I still try to make the most of what I have and I learned many years ago to face life on a daily basis.
Once again welcome and please take care all of you.
I know what you mean Peter. I'm sick of being referred for additional medical care and they have
no idea of what of the needs of pwp. A recent physiotherapist told me to turn over whilst examining me on a bed, when I told him a couldn't he just glanced at me and promptly left the room, those silly daily little things that can be so frustrating and upsetting.
I have also just been diagnosed with PD (December 2013) at the age of 41, and have gone through the emotional wringer over the last month or so.
You're right the feelings of isolation are intense. I find that I spend more time trying to comfort and convince my own family that " I'll be fine " and "nothing to worry about" to make them feel better whilst in real terms I am terrified of what the future holds.
I have changes to my thinking pattern and don't have the same clarity of thought that I did even a year ago and I find this so frustrating. So far I can live with the other symptoms, although they are a nuisance I keep thinking about soldiers who come back from war with their limbs blown off and just get on with it and live full lives, so I am not going to complain. Its the thinking process that gets me. I've always been sharp and on the ball and now that this has all changed I find it hard. Don't feel like 'me' any more and that is the part I morn the most.
This is the first time I have posted and frankly it is a relief to talk to others in the same boat, even if they don't reply. In fact it is easier than talking to close family as I can see the worry, pity and dread on their faces when I try and I hate that. I loath pity and I can't stand the upset that my condition is is causing my family.
I suppose the reality is that everyone will get used to it (including myself), but I intend to keep talking and keep posting just for the relief of venting frustrations and anxieties and I suggest you do the same.
We'll reply to you, all right. I'm rather older than you, so can't compare our feelings. But all your reactions sound reasonable to me. Yes, you do get used to it - but at the same time it's always there.
Thanks for the bit about clarity of thinking - it was only Friday that I said to my partner after speaking at a conference that i'd lost my edge. PD is as much if not more about these non-motor symptoms, which haven't been taken as seriously in the past.
I am older still than Semele if I remember correctly (turning 68 this month), but I have had PD for 16 or more years. Your post reminded me of my first year with it and the great distress it caused in my family. The longer they see you coping well, accepting your condition, and adapting to it, the more your family members will relax and start seeing YOU again instead of you as a Parkinson's patient. I know I always felt anger at pity or over-solicitousness, too. One relative offered to do things for me that I had no difficulty doing at all! She just assumed that I was going to be totally helpless and unable to pour myself a cup of tea or write a note to someone. To tell the truth, too much sympathy still irritates me, but I don't show my reaction as blatantly as I used to.
Welcome to all you new folk and I'm Sorry you find yourself here your going to be on a bit of an emotional roller coaster for awhile it will get better in a way lol. But it will take time for the grief and the why me bit to work it's way through. We are all here to help and there is life and hope after dx. I am 56yrs and coming up 7yrs since dx. Life is different and bad days are worst than they were but good is measured differently.But don't forget to enjoy your life and if I can help mail me.
Welcome. I was diagnosed August 2011, aged 29. My daughter was 6 months old at the time and I now have a son, now 5months. I work in a 6th. Form as a tutor. The occasional stress can have a negative affect on the symptoms and meds but I still work. It's got harder 2 yrs on but I take meds which help, to a certain extent. After 18 months I feel, only now, that I am reaching a real sense of 'acceptance' both of the permanent nature of pd and the sense of realising I have my limits physically. Keep moving forwards and speak to others and see if you have a PD Nurse in your area. Lots of support and links on social media - @tapehead81
Nostromo, I was diagnosed at 60 and that was 60 years to early for me. I suffer a different pain every day but have learned to live with it and I vow to keep as positive as I can. Live life to the full, tell all of your friends,they will forgive you, your family will become a pillar of support. Look at me giving advise and still a newcomer myself.
Hi nostoromo
I was diagnosed. with youngonset pd last year at 37years. although I had symptoms for two years previously got the usual no it can't b that u r only 35 etc etc. I have a little boy who is nearly four so I guess I just got on with not knowing what was wrong going to work etc. when I four find out all I wanted to do was give my consultant a great big kiss to say thankyou for finally making me feel sane again that was last year but I have buried my head in the sand and at my last appointment I broke down but I cope and eat chocolate and my son says when he is a bus driver he will get rid of my parkins as he calls it. being a bus driver to him means a grown up. so anyway that's my experience I take each day as it comes and say I am better off than most people. oh but what I wouldn't give to b Able to sleep all night. :)
Hi everyone this is my first time on here and I have found it helpful already and to find out I am not the only one with pd early has been a comfort. :)
Welcome, sleepless! I'm sure you'll find lots of information, support and personal accounts (sometimes humorous, sometimes deeply touching) on this forum. It has certainly been of great value to me.
My case was more typical than your early onset PD; I was diagnosed at age 56, when I had already had PD about five years. As soon as I started on Mirapex (Pramipexole), my symptoms disappeared. But in the succeeding years, as they reappeared, other medications were added to my regime. To be brief, my case is exceptionally slow-moving, for I'm still in the first stages of the disease though I've had it approximately 17 years now. Mostly, it's the luck of circumstance, I believe, but exercise and optimism do deserve some credit as well.
Best wishes to you, especially a wish for peaceful slumber!
