I wonder if anyone would like to chip in with thoughts/suggestions please? I’m trying to pluck up the courage to book a Dr appointment – I’ve always been reluctant to do this and I seem to have lost a lot of confidence of late. I was supposed to be having a hospital appointment with a neuro/nurse in March, but they postponed It until July and then again until December, which I’m not happy about, but what can you do?
In the meantime, last time I saw a GP, they said I could go to them first with any problems, which is good because on the two previous occasions I phoned the Parkinson’s team at the hospital, they said they would call me back, but never did.
I’m having ongoing problems with wearing off and extreme fatigue/sleepiness during the day and insomnia at night. I think my legs are feeling weaker too, but not sure if that’s just the tiredness. Constipation is an ongoing problem, which eased when the doc prescribed Laxido, but in the last week or so it has got worse again.
I’ve added more Sinemet to my meds regime (I made them aware that I had done this and they didn’t seem to be concerned. But sometimes I have really difficult days to the point where I can’t really do anything until midday.
I have an appointment with a nurse for a health checkup on Wednesday, but am worried about getting there if I have a bad day.
Any thoughts/observations/suggestions very welcome and thanks in advance,
in the first instance book a Taxi or arrange for a friend to give you a lift so can physically get to your GP practice.
Sounds like your Parkinson’s is getting worse. Your GP is unlikely to fiddle with your Pd meds much. Phone the Parkinson’s nurse. If you don’t get through ask to speak to the secretary for whoever your neurologist is and explain your problems and ask for them to get someone to contact you back. If you get no reply try again. If you really struggle ask the hopsital switch for the neurology secretaries and ask one of them to help. Even if your appointment is not iminent you may be able to get a cancellation appointment.
Thanks for the reply. I hope that if it is getting worse, there’s something they can do. Last nurse I saw said there’s a long way to go and seemed quite positive, but that was over a year ago. I was wondering about the meds re: tiredness, especially Entacapone - i had a great start with this a year ago, just for a day or so it seemed to be working (!) but I don’t think it has really worked for me and maybe a switch to something else other than entacapone would help.
Hi Roy,
just because it’s getting worse doesn’t mean it can’t be treated by changing drug doses or drugs. If the entacapone isn’t doing anything maybe you just need it changing to something else.
Thanks - just hoping for something to feel better and more stable. I think some people do manage to improve the way they feel so here’s hoping. If I could just improve sleep it would help.
Sleeps a tricky one. A lot of us have some sort of insomnia. Sadly sleep hygiene is the only thing that has helped me. theres loads of advice floating around but essentially don’t use your phone at 3 am when you wake up as you’ll never go back to sleep. I try and listen to music til I dose off which helps.
Hi, just a quick update if you’re interested. Went for my Wednesday appointment with no major problems. Finally had a telephone appointment with my doctor today.
What I didn’t know is that his father-in-law has PD, so although he’s not a specialist, it’s a subject he knows something about.
He doesn’t think my condition is necessarily getting worse. Incidentally, I found an old diary that seemingly described a worsening condition - things subsequently eased. I had forgotten about that. Basically, doc said PD can be like that.
Doc has suggested some med tweaks, which he will run by the hospital team and we’ll take it from there. Came off the phone feeling a lot more positive!
Good evening Roy … Pleased to hear you are feeling more positive. My experience with my practice’s GP’s is that some do not like to touch the Parkinson’s side of my health. I believe a lot of my sleep/fatigue problems are down to the mix of medications I am on.
It is 15 months since my last appointment with a Neurologist.
I had a bad case of Covid 2 weeks ago which clashed with my 6 monthly appointment with my Parkinson’s nurse, so that got cancelled.
Covid destroyed me for 24 hours & I ended up having a visit to hospital. Today is my first day of feeling my “normal”.
I took a blood pressure reading this evening because I was feeling so good & found it 98/63 … this is really low for me. My normal reading is around 135/90.
Something you might consider is joining Beneden Health. I pay £15.50 a month & can get appointments with consultants at their hospitals if the NHS waiting list is too long. I have an appointment to see a Neurologist in the pipeline. The NHS neurologist whose list I am on but have never seen has 750 patients which should be 300.
I am in the process of being taken off Beta Blockers [for Atrial Fibrillation] which causes nightmares & sleepless nights onto something else.
Steve, you have atrial fibrillation , your BP readings will be highly variable (some high some low), if you’re feeling well try not worry if they are occasionally low, if you’re not feeling well or worried then obviously seek help.
Hello Podd … I am quite interested in my health & the health of others. So I’m more interested than worried in whether my blood pressure is low or high. I am on medication for high blood pressure [Ramipril] & do wonder whether I should stop taking it while my BP reading is low. I seem to be higher first thing in the morning & low in the evening. I do often have big BP swings during the day.
Generally if I am not feeling my best than my BP reading will be higher.
