I am sending this letter to my MP, I don't know if it will do any good.
After long talks with our local PCT about a Parkinson's Nurse it seems talks have come to nothing.
I was so upset that I composed this letter as soon as I read the email that gave us the bad news.
So this is my letter
I am asking for your Help
Imagine at 53 years of age you loose your husband to Cancer, You have nursed him for the last few years and without the help of the MacMillan nurse you would have found it all too much to cope with.
While you are coping with this you realise that you have problems of your own, but it is all too much to bare.
After his death you seek help only to find out you have been rewarded with a condition called Parkinson’s Disease.
You eventually get to see a neurologist and start to take medication, the side effects make you feel sick and you spend your time travelling around in your job with a packet of ginger biscuits permanently on the passenger seat of your car.
You are finding day to day tasks very difficult but what can you do you have to pay your bills.
Then into your life comes the help of a Parkinson’s Nurse She is only a phone call away, you build up a relationship and she has the knowledge to help.
Then she retires. Good for her devastating for you.
Her replacement doesn’t cover your area and you are left in limbo.
When you have Parkinson’s your whole life revolves around medication, when things go wrong with it all you can hope for is someone with the knowledge to help you.
I feel totally abandoned, the medication I am on is causing me to have addictions, the Neurologist I see agrees with me so I am trying to cut down what I take.
I am shit scared of going into hospital as I know of people who have not been given their drugs.
Then guess what the condition is made worse when you are stressed.
What has made this so distressing is the fact that Parkinson’s UK has had endless discussions with our local PCT and although the money has been offered to fund a nurse it has come to nothing.
So we will see, if any one who reads this is in the wilds of Licolnshire and feels like I do, please send your own letter to your MP