It has been some time since my last post, I am finding life is getting somewhat overwhelming, and I seem to jump from crisis into crisis instead of being methodical and organised!
I am now waiting for a date for a total knee replacement on top of cancer and Parkinsons, am I just a tough old sod who won't lie down or am I tough and have a spirit of steel that will not give in? I think I swing from one to the other.
Mind you, I have moved house at long last and we are now in a nice ground floor flat in an idyllic Cornish village with loads of bridleways and footpaths and close to the Pentewan valley nature trail where I take the hooligans a lot. Gemma has settled in well and she comes back on a Friday like a whirlwind! Max the hooligan has also settled in well, though Perdy seems to be taking much longer, maybe it's her age or perhaps she just doesn't like change.
So, if you are following this blog you may have Parkinson`s or care for someone with PD, so where am I now since my last instalment? Well, my voice is getting quieter, a common symptom, I also recognise I get very flustered talking to people on the phone, something that was never a problem in the past. I had to speak to an advisor from my building society today, and I now make sure they know about the PD, almost using it as an excuse for my jumbled speech, then I feel they are patronising me which I hate lol I just cannot win! I find myself avoiding large crowds, I hate it, almost claustrophobic. I am happiest out with my dogs in the woods, although it hurts my knee, I don`t have to put a social mask on. Am I getting a loner? maybe so, I recognise that isn`t a good thing, so maybe that`s good too. I wish James and Christy lived a bit closer, but that`s something I cannot change.
My medication regime seems to be getting larger as time goes on, I see this as a double-edged sword though. I feel the PD is fairly well controlled by the meds, but some of you will know I have Gastric Dumping Syndrome which seems to be tied in with the cancer surgery, basically, I slowly get a build up of gastric bile which then has to come out, hence `dumping`. It is very unpleasant and knocks me back for a day. I am starting to recognise the symptoms now, the bile burning the back of my throat, my ears start screaming as in tinnitus and I get very withdrawn and sleepy. Once it is evacuated my body, I need to sleep.
It`s questionable if it's a diabetic or pre-diabetic but I am trying to modify my choice of food and make sensible choices avoiding too much sugars etc. My Daughter In Law has sent me a book; The 8-week blood sugar diet, so I am trying to adopt some of the advice in there. If it is to do with the cancer surgery, I am concerned about that too, I seem to be in remission at the moment, but aware Pancreatic cancer is capable of some nasty surprises.
I do wonder though if the increased meds and all that alkaline etc in my system will aggravate the dumping syndrome or not. Mind you, I know a lot of people with PD suffer from nausea too, so is my diagnosis right or wrong?
Going back to the PD, and my online support group
https://www.facebook.com/groups/174448966439575/ Parkinsons Support and Friendship UK,
I see daily the negative effect PD has on my friends. Depression and anxiety is high among group members, from slight depression and worry to full-blown anxiety which can be so destructive.
https://www.parkinsons.org.uk/information-and-support/anxiety
It is widely recognised and acknowledged, and from sufferers family perspective must be so cruel.
So, as to the immediate future, I need to get my knee replacement done so I can start to recover, but talking to the medical secretary it ain't gonna be soon. Treliske put a stop on elective surgery in the spring to save money and to help the very busy A&E department. They still have not caught up so she suggests it will be months not weeks before I get a date. Not helping this is the fact I tested MRSA-positive so can only have the surgery in Treliske Hospital so a long wait is still ahead I fear.
Well, this has been a bit of a catch-up, thanks for reading, do feel free to share this blog with others.
I will post an update very soon and maybe some more poetry.... you have been warned lol
Take care one and all and be nice to each other.
