I found out that I had Parkinson's last October, it was a bit of a shock, I knew something was wrong but did not expect it to be that.
My Auntie was diagnosed with Parkinson's at 45 she is now 60, two years ago she had brain surgery, which has been a major improvement for her and she is now off all the tablets, it is amazing to see.
I try not to think too far ahead, but I do have moments where I think "oh, god, what is going to happen to me", fear sets in along with a wave of panic. I suppose it is the fear of the unknown, but that could be said for anybody, so I guess it is normal to feel that way.
There does not appear to be any evidence that Parkinson's is hereditary and have been told that it is a coincidence that my Aunt has it, however, I would be interested to here if anybody else who has PD also has a Family member with PD.
I was diagnosed with PD nearly 4yrs. ago. Like you, it was an awful shock and took me a year to come to terms with the situation. Even now, I sometimes can't believe it. No one in my family has ever had Parkinson's, but strangely my next-door neighbour was diagnosed 2yrs. before me and another friend in my village has just been told she has it too. There are only 290 residents where I live, so the incidence is quite high......makes you wonder. Apparently there's a 5% chance of it being hereditary. (A question my son asked!)
You will have good days and bad days, but a positive attitude and exercise help. We all progress at different rates and react differently to the meds., so unfortunately no one can predict how you will be in the future. I agree it's scary, but chatting on here helps.
I wish you all the best and hope you will find this forum useful.
I was diagnosed last november after a DaTscan at Addenbrooks. I too find it hard at times to accept. Sometimes I try and convince myself that they were wrong. My granny and two aunties all had Parkinson's so despite it being rare to inherit it, seems it can happen.I also had a blood test to see if I was actually a carrier of the gene as the girls both wanted to know.
Im sure that everyone at some point must have worries about the future. However you feel, this is a good place to share thoughts and feelings. You don't feel you're fighting the battle alone.
Thank you for taking the time to reply.
It is great to know that I can now talk to people who know exactly how I feel as it is hard talking to Family members as they tend to get emotional and I then worry about them worrying about me.
All the very best to you.
thank you for your reply.
I was really surprised to read that your Granny and Two Aunties had Parkinson's, but it does now make me think that it could be hereditary.
I am really glad that I found the Parkinson's site and I am sure that it will be a great help and support, and I hope that even though my journey with PD has just started that I will also be able to support other's.
Best wishes to you.
Hello Beatrice - welcome to the forum, I am sure you will find an awful lot of folks on here feel of felt the same as you when they had the results of their diagnosis, it takes a bit of time to sink. We all have different symptoms to one another, but once you're meds have been sorted, your symptoms will subside a little but will not go away completely. You will find a lot of advice and get a lot of support from the forum, and if you enjoy some fun try the Creative and Social part of the forum!
Regards - Sheila
Hello again Beatrice, I think it is rare to be hereditary. I had a blood test done as my eldest daughter wanted to know if I carried the gene. I don't it turns out..
I have just come back from a few days in Yorkshire and happened to be sitting next to a lady with a puk logo on her fleece. She was talking about her symptoms and like Sheila said each person is not the same as another.
Take care and catch up again soon I hope
I am sure that the forum is going to be a great support, it is a lot easier to talk to other people who are going through the same thing.
I have some great friends but I feel that they now look at me as their friend with Parkinson's, rather than just their friend.
I am sure that being part of the forum will help to keep me upbeat and I hope that I will be able to make a difference as well and help to support others on the site.
Hi Sue - hope you enjoyed your trip to York and the weather was good to you
Hi beatrice - I'm sure you will gain a bit more knowledge and support from the forum about parkinsons
Keep well both - Sheila xx
Thanks Sheila we really had a lovely few days in Yorkshire. The weather was amazing unlike at the mo but it was good to just relax and go where we wanted when we wanted. Had to work first day back but was ok just a bit tiring. Keep wanting to sleep at the moment!!
Hope youre ok Sheila.
That word FUTURE , yes well Im 66 and I have lived in this house since 19, 80 thats 36yrs and if I am lucky or the other, you know, unlucky I will survive the next 20yrs so all the money we have spent on this house in the last two yrs ,well in short some other person will have more time here than my wife and I ,but back in 1980,, now was the future and though it wasnt until 99 that I heard those chilling words,, "you have PD" even then it did not sink in ,it has now and to be honest though I am under the cosh with deepression ,and I fear THAT MONSTER more than BLACKHEART pd,, and when I am shutting down I say to myself, "well come on then stop my heart youve stopped every other muscle why dont you stop that one ,," of course it cant as its playing games with his evil evil offspring Dee Pression and if it stops my heart poor old Dee wont have a victim to rip the heart out of every day, so my ticker keeps ticking and all I can do is endure endure endless seconds , minutes hrs days weeks months years decades, until the day as a result of sheer exhaustion and fear the old pump, having pumped countless thouusands of gallons of blood keeping old Fed alive well it breaks down and Im off to meet Mam and Dad,now dont let this sad tale get you down for I have been at war with these heartless two most evil of entities for many years and just when they thought I had given in or up ,smashed to my knees head bowed ,I jump to my feet oh suprise Im still alive and kicking my tickers ticking so im off treat or tricking ,no thats taking the micking (mickey) so bu????r off will you please Im too strong , go away til we next meet in my Future, I know this is a bit of a tale Beatrice I am trying to condense your horrible experiences which I know only too well into words and I can then create this picture for you , the years of suffering harden your mindset, and toughen you make you stronger, read and watch every little piece of info about PD question every Doctor Nurse push push the more you find out the stronger you become,
Best wishes FED