Well it`s been a while, life seems to have got in the way of me doing regular postings so it is high time that changed. One of the biggest things going on has been the success of the Facebook support group I am involved with , Parkinsons Chat and Support Group, this is the link: https://www.facebook.com/groups/490857204425819/ or just search Facebook for us. After a slow start we have gradually built up our membership and as at this moment we have 643 members. Not all are active and seem to prefer to pop in from time to time and just read the information and posts, while others play an active role posting most days even if its just a cheery good morning to the group. In some ways the morning posts are like the infamous Waltons goodnight John Boy scenes, but in reverse with many cheerful good mornings.
I have the greatest of respect for all of our members whether they have Parkinsons, or they are the main carer of family member. Parkinsons is a degenerative, progressive neurological disease with at this time no cure and being diagnosed is a life changing experience for the person diagnosed and their family. One thing I have learnt is that the two most effective things those of us with Parkinsons Disease (P.D) can do is to maintain a positive attitude and to exercise as much as possible. Of course the progressive nature of P.D can limit the extent of exercise a person can do but if we exercise within our limits it can only help. I still enjoy walking and having 2 Jack Russell's Perdy and Max means I go out walking most days in the woods or on the beach. Living in Cornwall means we are spoilt for different places to go and it is something I will continue for as long as I am physically able too.
Regular readers will know the year after I was diagnosed with P,D I received the shock diagnosis of pancreatic cancer, one of the more aggressive cancers. I had the life saving surgery exactly 2 years ago followed by 6 months of chemotherapy and despite the low statistical survival rate of this cancer, at this time I am well and due to have my next blood tests in the new year. I have no doubt that further down the road I will face a reoccurrence, but until then I face life head on and will stay independent as long as possible. My son said to me after my chemo that he doesn't know if I am brave or just plain stubborn, well I think the stubbornness streak wins!!
As to where I am now with the P.D, firstly I am taking part in two trials, the newest one being the PDSTAT trial which is looking to see if statins can have an effect in slowing symptoms. I do not know if I am taking the statin drug or a dummy (placebo) drug as it is what is known as a double blind trial, but if my taking part can help someone else in the future, to me its a privilege to take part.
I can say without doubt that Parkinsons is having a daily negative affect on my life, it ranges from general apathy and no desire to do anything whatsoever, but of course I must, to inexplicable pain all over the body, loss of balance, memory loss, and general clumsiness to name but a few. A good day is followed by a not so good day....... I`m sure you get the picture. One thing that does sadden me is getting nervous in busy shops almost a panic, I took Gemma to a local RSPCA Xmas fayre last Sunday and I had to leave, everything was closing in on me it was not pleasant at all. Also if I have to go somewhere unfamiliar by car it is a daunting experience, now I love driving, but going on a journey away from my locality now makes me slightly nervous. I know its just a gradual progression of my Parkinsons but I don`t like it, but I will fight it as long as I am able to drive. I am on a 3 year driving licence due to Parkinsons which has just been renewed but I know the time will come when the medics will deem me as unfit to drive thus losing my independence and that is not something I look forward too.
However, Christmas is just around the corner again and very soon I will have to brave going into the loft to get the boxes of decorations down, I will wait until I am having a good day before I brave that!! I don`t know yet if its just Gemma and I Christmas day or if James is coming down, whatever happens we have the magic of skype to fall back on. James is getting married next June so he and Christy are busy making plans, I hope health wise I will be able to take part on his big day and join in the celebrations, I am sure they will have a long and happy life together.
Well that`s my little catch up for now, I will start posting regular updates again life just seems to have got in the way this year!! May I wish you a joyous Christmas and a happy and healthy 2017. We have a saying in the Parkinsons community, I may have Parkinsons but Parkinsons does not have me! long may that continue.
Tony 30/11/2016
