I don't know anyone with PD but me (yet)


#1

I've joined to to try and make sence of this crazy PD world, so far I'am the only person I know with PD. I hope to come along to events and talks to meet others, here is my story, see you soon..

 

I’m 44 years old its Spring 2012.

So it all started with a slight shaking in my right foot, I took no notice then after about six months the shaking also started in my right hand. I then went to see my GP and was referred to hospital.

My first appointment with the neuro was March 12th 2013.
After the tests and scans I was told that I had PD.
For sure I was shocked to say the least, But with support from my friends and family and my faith I know its not the end, now the fight is on to keep thing at bay for as long as I can. I’m popping pills, doing the therapy and live n hope.

I work as a photographer, needless to say I need a steady hand lol… and as I’m far to young to retire I hope to come up with a cure soon…

( I’ll keep you posted if I do )
PS; let me know if you find one first……


#2

Welcome to the forum Coniston

Well you will  meet quite a lot of people on here who have pd , myself being one of them

My shaking started about 5 years ago i noticed a tremor in my left hand  , my gp put it down to anaemia , then a couple of years ago i noticed i was getting stiff and achy when getting up from a chair and out of bed in the morning another trip to my gp who said it was to do with my thyroid problem  another 12 months passed and i developed a very painful left shoulder and a feeling like i was shaking inside my body and a worsening tremor  off to  the doctors i went again   she said she thought it was something neurological  i had a appointment with the neurologist in August 2013 , at the end of that appointment he told me he was more than certain i had parkinsons i was 47 yrs old , i remember saying to him i cant have parkinsons i am to young  then three weeks later  my mother was also diagnosed as having parkinsons   .

After the  day i have had today  i certainly hope you come up with that cure soon  lol


#3

Hi Coniston,

welcome.  I returned to this forum a couple of weeks back.  Luckier than you - I'm in my sixties and was diagnosed almost 2 years ago.

It seems that exercising as much as you can and of course on days when you have the energy is important.

A few years back I used to nordic walk and had my first lesson last Saturday and hope to go again tomorrow.  I have found a couple of interesting research articleds about the usefulness of nordic walking for PD patients.

I've been thinking of joining a photography group and wondered about the affect of my left hand which has the occasional judder!

I too knew non-oen with PD and was horrified by the diagnosis.

I hope you find a group for young PD close to home.  Best wishes and am glad you have supportive family and friends.

 

Aber Wells

 

 

 


#4

Hi coniston good to hear from you . I have been recently diagnosed four weeks ago . I am 45 . Like you  shelly and aberwells I have felt devastated by the news and trying to come to terms with it . I am getting there although I know it's early days . If I hadn't have had this forum to turn to I think I would've gone mad . People have been so supportive and I know you will find support here too . You have come to the right place . When I look back I have had symptoms for a few years  . Mainly a back problem first and I was told I had arthritis in spine - maybe it was that or maybe this . I then had problems with frozen shoulder and had lots of treatment for this physio nerve block etc and was referred to orthopaedics for shoulder op to be told not shoulder problem but neurological one . By this time I was having problems with my leg and walking . I am right handed and its my right side that's affected . I do have a tremor but at the moment my walking is main problem and painful when driving . I work full time have my own business and like you really not ready to pack up yet . I love my job . I want to keep working for as long as I can . Exercise does seem a biggie here . Thinking about different things at the moment . I do a lot of walking . The Nordic walking sounds good aberwells . Hang on in there coniston we can all support each other . 


#5

Hi Coniston

i was diagnosed aged 43,  last august

id had tremors in my left hand (thankfully Im a righty) for a while, but the gp put it down to a side ettect of ventolin ---- im asthmatic too and tremors  is a known side effect of ventolin which ive beeen on since i was 7

I only saw a neuro after my wife insisted as it was getting worse . he diagnosed me in about 3 mins as 99% parkies which  was confirmed by the brain scan. A shock, but the list of other alternatives if he was wrong seemed worse if thats possible!

Im worried about early retirement too. I have to drive an hr each way to work, no real alternative, cant move, cant ever change jobs, as Im partner in a business and it just couldnt ever happen, unless i retire from it and do locum work which i cant affort too yet.  Driving is a real issue for me..... on a 3 year license now from the dvla  as I assume we all are -- bit worried about renewing it in 8 mths time!

 

Anyway keep posting!

 

J


#6

 

Hi there

I'm 44 and recently diagnosed, i've known i've been ill for over a year, though i think with hindsight it's been a lot longer, i havent met anyone else yet in person with PD, but we all share some of the same road on this forum.

For myself at the moment it's about getting too grips with this illness anything else a back seat, i love angling and photography when i was able but that's out of reach for me at present.


#7

Hi all newbies. I'm glad you've found comfort in posting here and reading similar PD news. Like other folks, I am coming to terms with living in a changing physical body and emotional state. Diagnosed in February this year, at 52 years of age, I am learning to change my attitude regarding what I can expect of my self. I have recently relinquished the management side of my job which appears to have released me from fuzzyness in the head, pain and stress. I allow myself to rest more after work so that I can be as energised as possible the next day and I try not to dwell on the new things that I find I physically can't do.......like pull up my pants! Aagh

 


#8

Hi all, thank you for being there and `i hope you are enjoying the weekend.

I'm 68 so can get up 6.30 to take various meds and then the Co-careldopa at 7.30. If the wonderful dog that I share with a friend is with me she gets a quick visit to the grass.  Then we have an hours sleep on the sofa.  I often have 40 winks after lunch. 

My mobile phone plays music when my PD meds are due - useful.

Have been doing major sorting out of home so that if symptoms get worse I can just sit back and relax between the execises and walks and not worry about not having energy to declutter.  Last year sent all my fathers photography equipment to PDSA.  I had kept it in case I learned more about taking photos - same also with his fishing gear - Had kept that in case I decided to go fishing when retired.  Hoping they are bringing pleasure to others now.  I've got 2 cameras and find I am always taking photograph on my phone. 

Last week I got a friend to video me walking so that I could see how my posture was - I watched the video and wept.  Then dsicussed the importance of trying to walk tall and really get into nordic walking.

It is two years on 23rd of this month since my diagnosis.  And 1 year on that date since I fell and fractured my jaw!  I plan to stay at home that day!

Like you all I am learningn day by day about PD.  Two toes have become bent and rigid and I learned it is caused by the PD affecting ligaments and muscles in my left calf and thats damaged the toes.

Then after cataract surgery I was discussing my double vision and learned that too can be caused by PD. But they think mine is due to my short sightedness.

Most nights I try to write in my journal 4 or 5 things I am grateful for.  That always includes the love and energy of my dog. And tonight I will include my ability to type and talk to you all.  Thank you.

 

Aber Wells

 

 

 

 

 

 

 

 

 

 


#9

Thank you all for your kind messages and advice...

looks like I came to the right place.smiley

I'am now so looking forward to going some events and meeting to share and meet others like us.