Hi there, this might take me a while because I keep nodding off! I am new to all of this. Since i was diagnosed nearly 5 yrs ago i have been in ignorant bliss! by choice i might add. Like most challenges and obstacles i have come across over the years, i took my diagnosis quite well. I think i coped ok because since my early 20's i have not been in the best of health having crohns disease. After a hemicolectomy i became pregnant with my son , once born i took up vigorous aerobic exercise sometimes 6 times a week which im sure kept me in remission for 17 yrs. Those days medics were not obliged to tell you the details and frighten you half to death so i thought that was it! cured no more crohns. Over the next couple of years i realised it was a chronic condition i had for life but no medication throughout the 17yrs which was wonderful. After a flare up a few years ago i was then put on immune suppressants and other equally strong stuff to keep all at bay. Whilst shaving my legs in the bath one day i noticed a tremor in my right hand, various appointments later irafter being told i had depression i finally saw a doctor at leicester general who diagnosed parkinsons. I was ok with this because i didnt know nor do i really want to know what i have in store, so i carried on as normal. Two years ago i was treated for thyroid cancer so that totals 3 conditions that sap my energy. I completed the Tough Mudder course and Lincoln 10k last yr and have registered this yr for the Lincoln 10k again in 3 weeks and 100k cycle ride through london in May. My training has been less than promising, i feel my conditions all the time and my brain is consumed by thoughts of what is going to happen to me. This is my reason for joining this forum, i am getting frightened.
Sorry that was a little long winded
Hi Barnowl1, no need to get frightened, I have had parky for six years now and find I cope with it quite well, in that I am still on the same meds as when I was DX all be it a higher dose. I think we all learn to cope with it in our own way, because we are all different in the way parky effects us. I think personally you cope with having parkinsons really well considering all the other things you have been through, you have been brave. You also do the right thing by keeping active. Did the neuro at the city general prescribe meds for you? I'm under the neuro at George Elliot hospital Nuneaton and belong to the Parkinsons UK Hinckley Branch, so I'm quite near to you. Keep posting and stay focused..........
Thanks for that Sheila, the reason i haven,t registered on here before or even read anything about Parkinsons is because no matter how much positive talk is said, you will always remember that ittlle negative piece of information or comment and dwell on it. I currently take Pramipexole (mirapexin) and rasageline but it has been suggested i start on levadopa which i am reluctant to take at the moment as i don't want to get used to it then have no other options later on . I will stayed focused as long as i have set myself little goals or challenges. I am raising money for Parkinsons running the 10k in two weeks time plus cycling 100k through London at night for three womens cancer charities, This is what keeps me going x
What a positive outlook you have. I was dx last August and have now started taking ropinerole as my walking has got worse. Like you I put fitness at the centre of my regime train twice a week rowing and cycling and some weights to stretch those achy shoulder muscles. Still get around the golf course with the aid of my electric trolly. Please try and make contact with your local group talking to those who have the T-shirt can be of great help, as is this forum.
Good luck with your challenges and stay in touch. I have become a volunteer worker in my local area and now help to run support groups and provide information stalls at local hospitals and surgeries which i find very rewarding
What an inspiration you are! Also as far as the meds are concerned if you feel as if you do not need 'extra' meds and are happy with the meds you have, then i'm fully with you on refusing them until you really, really need them, we should'nt be manipulated into accepting more meds. My Parkinsons nurse is very good and leaves it to my discretion as she said only I know my own body. When I was first DX I refused meds for 12 months until I eventually needed them.
Hi Taffy Tom
Well done to you also, keep on running......stay strong
Regards to you both - Sheila
Thanks Sheila but i don't consider myself an inspiration its possibly just the need to prove to myself that i'm not ready to put my lycra n trainers into storage just yet, its my way of coping and if i slow down i doubt i will get my old self back. I will discuss my meds with the consultant when i see him in April. Thank you x
Hi Taffy Tom, kind and knowledgeable words. I can understand why you volunteer but for me ,seeing others at various stages of this disease wouldn't do me any favours . One day i may change my mind.
will stay in touch with all you positive people