What exactly is Parkinsons . My husband was diagnosed about 18yrs ago he is now 73yrs Initially he experienced what most people expect, a bit of a shake, over the years this increased to on and off bad tremors and balance issues. However the last 5 years he has experienced symptoms we were not really aware of and had to just deal with each one as they arose He suffers from hallucinations some so bad he had to he hospitalised in a psychiatric unit to be stabilised on medication , he still hallucinates but not as severe. His eyes have difficulty moving and focusing now unable to read, unable to blink causes dry eyes they get sore and can become infected, Visual-spacial awareness means he cant judge distance so when going to place a cup on the table for example he will miss These are just some of the more distressing symptoms apart from tremor , stiffness and incontinence etc. I dont know if it would have been useful to be aware of all these symptoms before they happened but definitely I need to know where we are with it now , and I am, to better understand what is happening to my husband .
All these symptoms thankfully are not going to happen to everyone
I feel not enough awareness is made of Parkinsons which is now the second highest neurological disease to Alzheimers
This site gives support and information as does Parkinsons uk . Thousands raise money every year usually for research which is badly needed but I feel it is us who is living with the disease that desperately needs the help . We have Parkinsons nurses but not enough or enough hours. When you need residential or nursing care you will probably have to fund that and you will end up in a facility dominated for people with dementia who have very different needs to yours.
Government needs to do more for care in the community and residential care
We all need to be writing to our MP to local councillors . The run up to the election all parties were able to identify large amounts of money which was available for social care we must hold them to that
Thanks
Hi Melrose - You are right in saying that we do not know enough about most of the stages we might or might not go through with this damn Parkinsons. Who will suffer and who will not and why some and not others? But who really has the answers and would you really want to know what will happen at the next stage? I have had PD for just over 10 years and I am 67, things have been going along fairly smoothly until this morning when I tried to get out of bed and really really struggled, my whole body just seemed to go into shut down and didn’t want to move. It was frightening as this is the first time I had experienced a freezing episode, it was quite an unusual feeling, and not one I would like to have often. It is certainly a wicked disease to have to handle and will never come to terms fully with what we have.
But we have to try and rise above it and keep ourselves motivated. Take care of yourself also, and wish you all the best. - sheffy xx