I'm a doctor, I can cope !!

I have read the other blogs and can identify with much of what has been written.
Where my story differs is that I knew what was wrong but tried over many months to ignore it as being the usual vivid imagination of a medic. At the age of 42 I had been qualified as a doctor for 20 years and had been a GP for major part of that time.

I told no one of my fears. Eventually I could stand it no longer and went to my GP and told her I wanted referring to a neurologist because I had PD. I don’t think she really believed me but referred me anyway.

When the consultant received the letter he rang me at home to come to his clinic that day (I know how lucky I am to have had such a professional courtesy). My husband was at home when I took the call and this was the first time he knew anything was wrong!
He was devastated as he learnt in under 2 hours what I had been denying to myself for 6 months-I had PD and he knew what that meant-the internet “enlightened” him more when he got home –unfortunately completely wrong –he thought Id be dead by 7-8 years post diagnosis and that is complete rubbish-stressful for both of us to say the least. Perhaps others can begin to understand my hatred of misinformation on the internet; it devastated our lives for many months.

The people who were let in on the news were but a handful. I didn’t want my kids to know and was worried that someone would let slip some comment. They were approaching GCSE’s and Alevels. They were not told for over 4 years and they have told me that they are glad they didn’t know but feel guilty at not being there for me.

I was used to getting on with things by myself and not needing outside help, not letting my guard down, I was the helper, supporter, carer and I could cope. And I was a GP so I knew about illness, why would I need a support group! And to admit to the thought of not being in control was terrifying.

Realising that you can talk to others who understand and that you actually cope better by sharing with them is quite a new experience for me.

Finding PDUK through PDS forum transformed my life and I have met some remarkable people who have helped me in practical and psychological terms. The 2 way support -being able to help and be helped in return has been such a positive feature in my life.

The sense of isolation has diminished so much and also I have found it easier to discuss with "old" friends after learning to be more open with "new" PD friends. A very major step for a control freak.

I have always been a glass half full sort of person, and having lost several friends in their 40’s who will never see their kids graduate, marry, have kids etc, I still see my present and future positively-prefer to be cured like everyone-but I have discovered that there are lots of opportunities and activities I never knew about or had the time for to explore whilst waiting for the cure-but if the cure happened tomorrow that would not be a day too soon!

Karen

Sam - Fighting PD

I have Parkinson's disease and im here to share my story and fight this disease with everything I have got!!

I first noticed a tremor in the little finger of my left hand when I was 19. I ignored it at first thinking it was probably a sports injury or trapped nerve, as at the time I was going to the gym and swimming 5 days a week. I also trained in martial arts 6 days a week for at least 4 hours every day. I started feeling really stiff and tired after training, a lot more than normal; I just thought this was due to the amount of sport I was doing every week, and that I was just overdoing it a bit. About 2 months later, my mum asked me if I was OK. 'What do you mean?' I replied. She told me she had noticed that my walking was not so much a walk but a shuffle and I was hunched over. I looked like an old lady walking down the road, not a 19 year old just starting out in life. She had also noticed that all my movements were slow and that I was dragging my left leg. Eventually, after I had completely worn out the side of my trainers, and the fact that I could not stop tremoring or even move normally, I decided to go and see the doctor. The fact that my mum had been nagging me for the last 5 months to go to the doctors, also probably had something to do with it.

So off I go to the doctor. After lots of poking, prodding and blood tests, I was referred to a neurologist, who said two little words that were to have a massive impact on the rest of my life. Those words were 'Parkinson's Disease'. By this time the tremor had spread to my hand and not only was I shuffling, but I was also very stiff and moving very slowly. The neurologist did all the poking, prodding and blood tests that my doctor had done, plus a few more and a million questions to get a full medical history. I also had MRI scans and tests to rule out just about everything you can imagine. This happened over the course of 2 years.

By the time I was 21, I had 2 neurologists. One doctor said I definitely had PD, but the second doctor did not believe that someone as young as I was at the time, could possibly have PD. Eventually I went to a third neurologist who also thought it was PD. My doctor started me on Parkinson’s medication to ultimately confirm the diagnosis. The drugs worked.

Since then I have gone on to complete and gain a PhD in chemistry and a 1st class LLB law degree. So here I am, its 2009, im now 28 years old and have been living with Parkinson’s for over 9 years. Without medication I cannot function, but with the meds comes the side-effects. It's a raw deal, but I decided it was time to stand up and fight. So look out PD, because here I come!!

"You can give Parkinson's all the room it needs, but never give it all the room it wants!" -

Sam Clarke 2009