What annoys me is

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1

What annoys me is that when ever I have a medical issue it tends to get solved by either additional medication or Physiotherapy.

None of the NHS seem to be interested in proper diagnosis & then coming up with a treatment plan.

There was an old lady who swallowed a fly I don’t know she swallowed a fly
perhaps she’ll die?

There was an old lady who swallowed a spider that wriggled & tickled inside her. Perhaps she’ll die?

She swallowed the spider to catch the fly & so on …

Rant over.
Best wishes
Steve2

2

It’s frustrating when issues aren’t properly diagnosed and only temporary fixes are offered. Hopefully, you’ll get a more thorough approach next time.

3

Everybody is entitled to a rant Steve2. I have a very good Parkinson’s Nurse and we have a good working relationship but she very much comes from the medical model ie evidence based etc and that’s fine but she has trouble understanding that is not the predominant issue for me which is more in tune with a social/psychological model of thinking. She sees me once a year for about 30 minutes if that, and at some point will invariably say to me ‘well you do have Parkinson’s you know’ - as if it is something I can forget. I think she thinks I don’t take it seriously because I don’t keep a diary of my symptons etc etc nor do I mind if there is no evidence for something, if a placebo works that’s fine by me, that sort of thing. I actually take my Parkinson’s very seriously, I just don’t want it taking centre stage all the time and why should I spend time writing a diary - which I have never enjoyed doing I find it boring - which to me, continually puts Parkinson’s in my face all the time. There are other ways to achieve the same end, but she rarely agrees and I do get a bit fed up with that. What does it matter how I do it or what I do if I am keeping well and holding up better than most expect - which I am. I am used to it now but, depending on my mood, I can sometimes feel like having a bit of a rant myself. Hope you feel better for having got that off your chest
Tot

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4

Good afternoon Tot … as always you are spot on with your message. Please let me get a bit more of my chest.

Everyone’s Parkinson’s is a little bit different. Mine is the Atypical variety & my issues are mobility. I do shake a bit but not noticeably unless I am carrying anything, eating or am in a stressful situation. I did have a heart ultrasound & the clinician commented that I had tremor, so some sort of body tremor I assume? My real kryptonite is gait freezing. If I stop walking for a couple of minutes I become frozen & cannot move. Sometimes if I have a bad one off episode it can take me 3-4 days to get back to my normal.

I play indoor bowls every day for 2 hours. There are 8 of us & I would bowl 2 bowls
every 15 minutes. I have to sit down between each bowl & then I’d get the
15 minutes rest till it is my turn again & I tolerate that quite easily.

Today for the first time since I started playing bowls I played 1 v 1 for an hour. So that is 30 minutes bowling. Twice what I would normally do in half the time. Having finished I found I could not walk normally, I had way over done it.

For the past week I have been having terrible nightmares & hardly any sleep. A few weeks back I spoke to the head of the Conquest hospital pharmacy, I told him my problems & the different medications I take. He singled out Bisoprolol which is a
Beta Blocker & I have been taking it since my A-Fib attack about 9 months ago for which I was hospitalised over night. So I contacted my GP today telling her I had stopped the Bisoprolol two days ago as I could not cope with how I was feeling.
The sleepless nights, the nightmares & extreme fatigue the next day.

She said I had complex medical issues & a lot of the medication I take does not get on with each other.

Amitriptyline, Bisoprolol, Rampril, Apixaban, Quetiapine & Co-careldopa.

This lady GP is excellent she has helped me a lot before. She was not happy that
I was stopping the Bisoprolol, but we agreed that I could at my risk & if I got another A-Fib attack I should start taking the Bisoprolol immediately. She has also referred me for an urgent Cardio appointment. Bear in mind I didn’t see a cardio consultant in hospital. I just got the required medication, it worked & I was discharged.

This lady GP was unhappy that I was put on Quetiapine.

A big problem she has is that she couldn’t interfere with the Parkinson’s medication
part of my problem & my Parkinson’s nurse has no input on my other medication.

Ho hum.

Yes I do feel a bit better now.

Best wishes
Steve2

5

Glad to hear that Steve2, not that I can do much about your circumstances infortunately, but I hope it helps to know I’ve read what you have written and can emphasise with that. People with Parkinson’s - off whatever variety - often have clashing problems especially with incompatbile medications and one professional not being able to amend something another professional has set up. I think at the end of the day you can only go with what feels right for you - after all you are living it every day, they are not; so if it helps Steve2, carry on ranting as you need.
Tot

1 Like
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Thanks Tot … Any opinions on my new topic just posted ?

Best wishes
Steve2

7

I’ve just had a quick skeg Steve2 and to be honest, most of it went over my head but I will read it properly when I get a mo and let you know what I think if anything. It must be hard for you to remember a time when you were able to move with reasonable ease - if indeed you ever did.
Tot

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Hello Tot … Two years ago I was no medication at all for anything. Around seven years ago I was playing Over 60’s International hockey. I was walking 12 miles a day &
was looking forward to the rest of my life & here I am struggling to walk 50 yards.

Best wishes
Steve2