The Future


#1

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.

 

 


#2

Hi Beatrice,

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.

Twinks. 


#3

Hi Beatrice

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.

Take care,

sue


#4

Hi Twinks, 

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.

 

Beatrice

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


#5

Hi Sue

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.

Beatrice


#6

 

 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


#7

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

sue


#8

Hi Sheila

Thank you.

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.

 

Best Wishes

Beatrice  


#9

 

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 


#10

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.

Sue x


#11

 

Hello Beatrice

                                 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