About 8 weeks ago my wife was walking our dogs and she tripped and fell. She was not badly hurt. A sprained wrist and a sore hip being the worst. 10 years ago she had a hip replacement and was told it would last for about 10 years and they would revue the situation. After the fall the wrist sorted itself in time but a nagging hip pain kicked in. Driving was uncomfortable for her. This was about the time I was prescibed meripexin (meripex in US) and was having trouble when the dosage was increased. I was, at the time incapable of driving due to increased tremor, just didn't trust myself.
The situation was not good. We ordered a 'shop and drop' from Tescos so had food delivered but we were both stuck in the house and the dogs were not getting any kind of walk. Dogs need a walk. It is good for them and like all doting owners it was a concern to both of us. "I couln't do it because I have an ilness which is incurable."
Something had to change.
Up until this time I did not walk the dogs. I am a bit dodgy on my feet, could not walk far and standing still on my feet for more than a minute or 2 made my ttremors kick in. Bite the bullet time re walking the dogs. Admittedly the walks were shorter but walked they were - by me. Hip and knee joints on fire by the time i got home. The more I walk the dogs the easier it becomes. Still sore but less so.
At the same time my new meds were creating heavier tremor throughout my body making me bloody miserable and unable to drive the car. The peak day was a Thursday when dyskinesia and dystonia hit me big time. I had a few diazepam and eventually things relaxed.
The next morning I phoned the hospital where the neuro was based but the ward was shut for the day. I then contacted my GP who asked me what i wanted to do about the meds. She was not my usual GP and she admitted she did not know much about PD
It was at this point that i became empowered to do something for myself instead of relying on decisions made by other people, namely medics. I told the GP what strength i required and she made up a script which i received later that day.
It took about 7/8 days to regulate the meds and get it right. Back sleepiing normally. Got up in the morning and did lots of things rather than sit on my bum and do nothing.
I gave the situation a real hard think about how i had been. I realised that i was doing the dying fly thing. "I'm a PWP, i can't do anything because i have an illness which is incurable".
I decided to change and change quite radically. This illness was beatng me about and I was not fighting back. i had thrown in the towel. White flag - I surrender. Life was passing me by. We did not go anywhere. All too much trouble.
It's only been a couple of weeks but i am loving, that is the only word to explain my new way of life, loving every day. We have had some great weather for the last 10 days or so. The front and back garden are looking great. I sorted it! Sure when i finished each session the tremors were up a bit but within an hour at most they were gone. A small price to pay. I cleaned the car - have had the car 17 months - always used the car wash. "I couldn't do it because I have an illness which is incurable." The house was beginning to look a bit rough round the edges. Spring cleaning next. The bungalow looks great inside and out. Power washed the drive and the rear riven slabs. Looks lovely. I am controlling my meds and my life.
I feel empowered and it feels great!
I look forward to getting up each day. I feed the dogs every morning. A small task but my wife always did it. Not now. I get washed and dressed as soon as i get up then take my meds. I used to sit around in my PJ's and dressing gown sometimes until mid afternoon. Some of you may think it was depression. It wasn't - it was just habit.
I feel so stupid that I have lost so many months/years because "I couldn't do it because I have an ilness which is incurable." I realise that due to my old attitude i stopped Elaine and I doing things on a regular basis which we could have enjoyed, and it was unfair on her. She never complained but we have spoken about it lately and she admits that she should have pushed me more. Well, maybe but it is my fault not hers.
I have let parkie rule my life for too long but no more. There may come a time when i cannot do certain things. There are some things that i cannot any longer do like play golf but there are alternatives. It is too easy to give in and in the past i have.
It is easy to give advice to other people but we need to look in on ourselves so that we follow our own advice.
When the time comes that your meds are not doing the business anymore then seek help but until then help yourself. When seeking advice make sure that the knowledge is freely given on both sides to expidite the correct conclusion. Blindly accepting what is prescribed is not the way forward. Information is out there. Do your own research. Be empowered.
It has taken me a lot of courage to admit to my past failings but if my old way of life rings bells to other people then maybe just maybe they can change things for the better not just for themselves but for those around them instead of being selfish and feeling sorry for themselves.
Apologies for the long blog but I did not want to leave anything out.