Hi Babs sorry I’ve not been in touch hope you are doing OK same goes to Tommy, Roy and Sheffi ve not seen or spoken to anyone for months regarding my parkinsons but have stopped taking pramipexole due to swelling in my legs which resulted in night in hospital with hairline crack in my jaw and damaged shoulder ligaments since I’ve been on opicapone ive been 90 % better so much so im now walking jasper 3 times a day in case I miss you all merry Xmas and happy new year to you and your families mam is not great but at 89 what can you say jasper is 14 months old now and a star
Hi Tommy sorry not been in touch hope you are doing OK keep safe and healthy mate we should try and catch up
Hi to all,
what with self-isolating/ hibernating I feel very anti-social.
Cannot lie, a part of me has actually enjoyed this: the anti-social git in me. I am aware that this is quite selfish, but hey, it makes a change.
Had to go to the dentist last week for an extraction, was the highlight of the last ten months.
Am waiting for my jab. I take it that PD is regarded as deserving for this to be early…
Would love to hear news anyone who is up to replying.
Any tips for survival?
Here are a few:
- waking up is always good
- a sense of humour is essential
- food: this should take up a large part of the day
- I am lucky because it takes me so long to do anything I could always be prepping or cooking
- there is of course the wine
- this can hinder or help
- tv now am very old fashioned about this; too much bad for you
- have reversed this opinion
- netflix is the way to go
- as is sky arts
- of course radio 4, 4x and world service
- lastly but not leastly: Led Zeppelin and J.J Cale
please give me your list if you feel like it.
Love as ever to all,
Lesley
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Hello Lesley, good to hear from someone!
Saw the nurse at my gp practice for a flu jab a few weeks back and asked about the vaccine, she said I wasn’t down as a priority? What can I say, it’s not like I’m going anywhere to catch anything anyway so I’ll just wait my turn.
I’m in accord with your list for the most part but for me music would be nearer the top, I’ve got a subscription to Tidal (posh Spotify) and a streamer that plays through my big amp and speakers. With just about anything that’s been recorded available my turntable and cd player hardly get a look in & it’s so convenient controlling everything from your phone.
Had an exchange with Keith through the first lockdown and we said we’d meet up when we could, obviously that’s not happened yet.
Be good to hear from some of the ‘old gang’, still particularly interested in how Tommy is managing without pd meds but don’t reckon he comes on here anymore?
Stay safe and well all!
Hi there Mrs T& Roy
Couldn’t possibly disagree with your list choices.
I tend to take my time in the morning, chill a little in the afternoon and relax at night.
Don’t know what day it is anymore and don’t particularly care. LOL.
It’s been 2 years since I last saw neurologist and probably he’s going to cancel this year.
My sleep is still a major issue but my leg tremor has now reached the point where if I stand still my specs fall off.
So I’m going to risk public transport in a couple of weeks and travel to a private neurologist in Newcastle under Lyme.
Great to hear from you again
Tommy Tremor 
™
Tommy, I can’t believe that you are having such a bad time. The frustration must be enormous, there she goes master of understatement again. I sometimes feel that every second of every day is given over to PD. This is quite simply exhausting and counter-productive but in order to avoid the power of PD I need serious distractions: hence the list.
I still am ruled to some extent by a work ethic which makes me feel guilty for doing nothing. Once engrained this is very difficult to eradicate. It is getting easier.
Keep pushing for the result you want/need. If you would like to chat or message:information removed by admin to protect users privacy
Lesley T.
Sorry to labour a point Tommy but did you just stop taking your meds and why?
I’ve not seen my neurologist or pd nurse for a similar period but then the NHS are all busy with covid aren’t they?
Other than an interest in Tommy’s predicament I’ll give up on this thread because of the apparent lack of acknowledgement to my input,
Thanks and cheerio.
Don’t give up. Hopefully the crowd will come back. Maybe it is just a reflection of the times…“they are a changing” apparently.
Hi Roy
Sorry ive not been around for a while , it just seemed that everyone was falling away from this thread and when I looked for the music thread it said that it had reached 10000 posts
and automatically closed .
I promise i have not forgot anyone and all other threads i was reading were looking for advice on medication etc which I don’t feel my input would be helpful .
i miss the fun and friends that the musketeers built .
To answer your question on medication i received a letter telling me to withdraw [ briskly] from all meds and ended up in a bad place and had to slowly return with the GPS help back on to some meds although not pd related.
So I’m no further forward ,IN FACT more back to the start and even doubting if I actually belong on this forum but I did not pick this forum from a hat ,PARKINSONS with clonus was my original diagnosis .
Next Tuesday i have an appointment with a private neurologist as my symptoms are still the same although this past week ive been extremely dizzy even lying down only moving my head a little but I don’t believe it’s related to the tremors .
I’ve been in touch with Keith and he seems to be much more settled now that he has been properly diagnosed and managed although he had to self isolate with the covid recently but seems to be fine thankfully ,haven’t heard from Babs despite texting but she may have a new number for all i know ,Peter and Mam are ok Mam has had her first jab.
Well that’s the news for now apart from I’m on the bookface now that’s where I found Peter and i still have the same number .
Tommy
Hi Mrs t
Thanks for your kind response to my post ,i shall endeavour to keep you updated in anyway i
can and if you could please read the response to Roy as it contains the latest news and saves me typing it twice .I am Now on Facebook and messenger as Tommy Tremor.
TOMMY XX
Good to hear back from you Tommy, not so good to hear your current situation & I hope the private neurologist is able to help you.
There’s a new music thread I started here -
https://forum.parkinsons.org.uk/t/what-are-your-favourite-songs-2-0
The usual suspects post, have a look & pop some toons on, seem to recall you have quite good taste 
Good to hear the others are plodding on, a little worrying about Babs though as she wasn’t having a very good time of it last time she posted.
Don’t be a stranger Tommy, well no stranger than you are 
A cliche I know but stay safe my friend.
Sending hugs to all.
New wheelchair arrived today. Never thought I would be so excited about a wheelchair…
However, it is quite racy and more sturdy than the last one which has been demoted to the shed!
In order to be ready for the new “Line of Duty”, Luke and I have watched all 5 series in one week. This involves the kind of binge watching I associate with younger folk. Result: we feel up to date and ready.
We kept telling ourselves all the way through that the writer had taken poetic licence with the story lines then Clapham Common.
Hey Mrs t
I really can’t get a grip of line of duty, but I am doing my best. Hope you are well and happy (for the want of a better description) with the chair.
I don’t know where we are up to news wise at the moment but I have gone private after 3rd year of no neurology appointment and sacking one to the amazement of my gp. I’ve gone out of County to Newcastle under Lyme and Stoke but the F. N. D. Diagnosis has been scrapped and replaced by my original diagnosis of parkinson’s although tremulous.
At this very moment I find it impossible to stand up and hope it will return by the the morning as I have not been on any parkinson’s medication for nearly 4 years now and take more & more beta blockers and oh I have forgotten the rest.
Take care
Tommy x
Well hello Roy S, T1 and mrs t, hoping this finds you all as well as can be expected. I see you’ve had a new wheel chair then mrs t, and hope you have safely passed your test on it 
I have a new toy also, it’s a stair lift!! It has a racing stripe green on it, and thinking It was going to go fast up the stairs I said can’t wait to try this out! But to my disappointment found that I could just about walk quicker up the stairs myself! but found it handy for taking ironed laundry upstairs 
What I have been doing in lockdown is sorting out Zoom which is brilliant for keeping in touch, well I’m going off upstairs now, bedtime at ten, will just about make it on the whizz machine 
Sheila (sheffy)
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Hi Sheffy
Good to hear from you too I have heard your poetry on the Johnny parky show, don’t think I have ever spoken to anyone famous 
Anyway enjoy your new laundry carrier.
Regards
Tommy
Hi Tommy, sheffi,Roy and lesley hope you are all OK and that you remember me it’s been a long time just wanted to check up on you all
Hi Petec, Greeting from me, don’t know if others still frequent the forum, i’ve just looked in for the first time in months, hope you are as well as can be, hope your little doggy (that was) bet he is quite big now and behaving himself. I will mention your Mum hoping not to upset you through any ill health or condolences if she has passed on x
keep focused - sheffy x
Hi Sheffy good to hear from you seems like everyone has moved on mam is still here but really struggling now not very mobile and sleeping much of the time she is 91 next month jasper is 2 and a half and my constant companion extremely stubborn but loving and very loyal hope you are keeping well as can be I’m struggling with fatigue but ok
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Hello Pete, of course I remember you and it’s good to hear from you.
Things are all good with Lesley and I, might even get away to somewhere exotic this year - Blackpool in November 
Cheers Pete and don’t be a stranger.
Hi Roy good to hear from you glad you are doing OK I’ve been busy lately with mam struggling to do much for herself old age has finally caught up with her and of course I have jasper my shadow he,s two and a half years old now can’t believe how quickly time has gone