I have had Parkinson's for 7 years this April. Now I am used to it and mostly happy. But why is there no cure? A friend tells me that her husband is going to do a skydive for PD; I see sponsored bike rides and all sorts of stuff but it depresses me. PD must cost the economy so much. I was 51 when I was diagnosed and had to give up teaching. There should be a proper targeted push to find a better way to control the symptoms, one which does not rely on these homespun initiatives.
Anyway, that's probably a bad start. What I wanted to say was, this condition is very slow moving and if you are recently diagnosed, there are many worse things to be saddled with. Pace yourself and don't be afraid. Having this degenerative disease has probably taught me the wisest lesson of my life. Enjoy the present moment. It really can be done.
I can understand where you are coming from, and coping with any illness or condition on a day to day basis can cause frustration at the lack of improvement in treatment and possibilities for a cure. I should think that not so many years ago people with Parkinsons could have only dreamed of where we are today with advances in medication. Hopefully i will stay slow with my progression of the disease like you but for some it is much faster. Venting your frustration on here is a good way of getting it out ! plus the people on here know where you are coming from.
This last weekend i completed a charity cycle ride through the night through London, it took me 8.5 hrs to cycle 107km . It was a difficult journey towards the end and i won't introduce my trouser area to a saddle anytime soon but i did it and was grateful to be able to do it. I am a positive person with a healthy outlook on life but i do get glum at times and feel a little sorry for myself. On arrival at home from the ride i found that my daughter and her friend were doing a charity cake bake in aid of a local child with neuroblastoma, she is only 3yrs of age. All of a sudden that put my position in this cruel life well in its place.
There are a lot of clever people out there working to find cures for all medical conditions, lets hope they succeed soon for children like Scarlett who haven't lived yet. Keep going but i understand what you mean when you deal with a condition day to day it can seem like an endless struggle. If nothing else talking can be good!
8 and a half years since diagnosis, and 18 months further on from my last post. Life is still good. I have a fantastic husband, lovely kids and wider family who help me, support me and make me laugh. I have a new bike which really brings me joy, bowling along on a sunny day. I have written a novel and a travel book. I started a vegetable plot this year, practically drowned in runner beans and have 80 huge onions stored away for winter. After I was diagnosed, I went from being a prolific reader to not reading at all. I don't know why. But I joined a book club and HAD to read a book every six weeks. It was all I managed for a while but in the last year I have read other books as well. The enjoyment of being lost in a book has come back. There are things that are harder to do but in some ways I am more at peace with myself than ever. It's a conversation you have to have with yourself over time. You have get there in your own way. I know some people aren't as lucky as me but I just wanted to give real hope to anyone newly diagnosed. This is what has worked for me:
Keeping active,
Thinking of everything I've got and not what I've lost
Doing things I like doing
Resting and setting my own pace
Keeping up to date about the condition
Thinking about the timing of my medication - no-one knows better than me how I feel
Lastly, my worst fears are nowhere near being realised as my brain is still fine (although you may disagree!) and I believe much of that is due to the fact that I am no longer afraid.
PD diagnosis, even if you have already suspected it as I did, is quite a blow.
What really doesn't help is how PD is portrayed in the media which usually shows the very worst effects. And rarely illustrates just how many of us are getting on with our lives as best we can as Athena says.
a TV programme called "This farming life" did feature one couple. The lady Penny has PD and while the disease was discussed and the effect it was having on their lives shown it was not over dramatised. I think it helped my husband understand the condition better. He seems to have an aversion to reading anything about it but he is very supportive so I'm not complaining about him. D
