Parkinsons Disease

DLM · August 2021

You are an inspiration, Dave!

strumjoughlamps · October 2021

Hospital today with PD Nurse.

2 more prescriptions added to the list so that’s now 4 prescriptions a month now.

Also been advised to start looking at Personal Independence etc.. as I now have and I quote ‘lots of issues’.

Told ya it was aggressive in me innit.

Nitefly · October 2021

Aww crap. Good luck with the new meds.

Snap · October 2021

Hi Dave, heck, what to say. Good luck with it all. There are things going on in PD treatment. in 2023 there is a new jab being released to treat people who's condition has progressed. It looks useful. There is also a "do at home" jab of apomorphine that apparently works well too, and that's available now. Think it's called Apo Go Pen.

all the best.

strumjoughlamps · November 2021

Yowsers, 2 weeks on from my additional meds and I can now move when I get up for a pee in the middle of the night. Dystonia and Bradykinesia is still very apparent in me but less painful.

Also received a phone call from Parkinson’s Org who had been given my details from my PD nurse to assist in my application for PIP so that was helpful.

My Wife has gone from part time 3pm - 7pm to full time 7am-3pm which helps the shortfall of me going from 37.5 to 22hrs and she works the same side of the City as me and I also work 7am - 3pm so she drops me off and picks me up.

Been the best 2 weeks I’ve had in 15 months.

Nitefly · November 2021

Excellent news - very pleased that the new meds are doing their job

bertie · November 2021

DLM said:

First off, I'm very sorry to hear your news, Dave.

@Nitefly @Grunfeld @boogieman

boogieman said:

Strum strum/ jough rustice / amber lamps.

I'll answer for Dave as Oli has "challenged" me:

Our OP joined the intermusic/MusicRadar community as strumstrum and would occasionally post a clip of music, referring to it as "a new strum".

We had a member who played in a band called Rough Justice who would pimp his act constantly. I remember him having a nice collection of EBMM guitars (also played by his co-guitarist in the band IIRC), and posting often about RATT*, which he always capitalised. Before the community moved to tFB, parody accounts were often tolerated at least for a time, and strumstrum also signed up as JoughRustice to poke fun at the Rough Justice guy always bigging up his band.

Amber Lamps is derived from the AC Transit Bus fight viral video quote: "I need an ambulance". Drew @WiresDreamDisasters went by the handle Amberience at one time, though I don't think Strum was referencing that, or that Drew had "amberlamps" in mind with his name either.

How did I do?

We had some great fun in previous iterations of this community. I really miss J-Mo and BJ, neither of whom I ever met.

*I've been listening to them a bit recently, being something of a latecomer to their music, though very familiar with their scene.

Im from pretty much the same lineage and wasnt Strum actually StrumStrumStrum............... not just plain old StrumStrum ?

@strumjoughlamps - hope you're doing OK mate, remember the advice you gave when I was buying my first DSLR - still have the old 40D to this day

Image: /plugins/EmojiExtender/emoji/fb/smiley.png

@DLM ; - ah J-Mo "the not exactly shit Jason Morris" - such a sad thing to happen, pardon the bluntness - who was BJ ?

boogieman · November 2021

bertie said:

DLM said:

First off, I'm very sorry to hear your news, Dave.

@Nitefly @Grunfeld @boogieman

boogieman said:

Strum strum/ jough rustice / amber lamps.

I'll answer for Dave as Oli has "challenged" me:

Our OP joined the intermusic/MusicRadar community as strumstrum and would occasionally post a clip of music, referring to it as "a new strum".

We had a member who played in a band called Rough Justice who would pimp his act constantly. I remember him having a nice collection of EBMM guitars (also played by his co-guitarist in the band IIRC), and posting often about RATT*, which he always capitalised. Before the community moved to tFB, parody accounts were often tolerated at least for a time, and strumstrum also signed up as JoughRustice to poke fun at the Rough Justice guy always bigging up his band.

Amber Lamps is derived from the AC Transit Bus fight viral video quote: "I need an ambulance". Drew @WiresDreamDisasters went by the handle Amberience at one time, though I don't think Strum was referencing that, or that Drew had "amberlamps" in mind with his name either.

How did I do?

We had some great fun in previous iterations of this community. I really miss J-Mo and BJ, neither of whom I ever met.

*I've been listening to them a bit recently, being something of a latecomer to their music, though very familiar with their scene.

Im from pretty much the same lineage and wasnt Strum actually StrumStrumStrum............... not just plain old StrumStrum ?

@strumjoughlamps - hope you're doing OK mate, remember the advice you gave when I was buying my first DSLR - still have the old 40D to this day

@DLM ; - ah J-Mo "the not exactly shit Jason Morris" - such a sad thing to happen, pardon the bluntness - who was BJ ?

Big Jon.

strumjoughlamps · November 2021

@bertie , never had a 3rd strum, that would be plain silly

Hope you are well fella.

bertie · November 2021

Hi mate, must be age, but I saw you as so much more (well 50% more TBH) than just StrumStrum
loads of shit over the last 7 years, but significantly put into perspective -

bertie · November 2021

boogieman said:

Big Jon.

hmm not sure he was of my era ? I remember a big lad (ex forces ?) from Newcastle - not sure he was Jon..........

@Snap ; - Snap from Intersound days ? met for a pint in Castle Donnngton ? bought my strat pickups ?

strumjoughlamps · November 2021

bertie said:

boogieman said:

Big Jon.

hmm not sure he was of my era ? I remember a big lad (ex forces ?) from Newcastle - not sure he was Jon..........

@Snap ; - Snap from Intersound days ? met for a pint in Castle Donnngton ? bought my strat pickups ?

TotalWar

bertie · November 2021

@strumjoughlamps ; yes TW.......... so did TW become "big jon" ?

DLM · November 2021

@bertie No, Big Jon Kingsman (he was really tall).

https://www.cambridge-news.co.uk/news/cambridge-news/beloved-cambridge-musician-died-dvt-21035883

I think he was on Intermusic with a Dallas Cowboys helmet as his avatar as jonnykingsman. He made great contributions to this site in the Theory section, particularly with chord voicings and a huge list of songs playable with very few chords.

TotalWar was someone else entirely: a big ex-forces chap from Newcastle who took up opera singing as a tenor and did a bit of that at one of the meetups.

bertie · November 2021

yeah I met TW a couple or three times at GASFests - not sure I remember Jon.

Snap · November 2021

strumjoughlamps said:

Yowsers, 2 weeks on from my additional meds and I can now move when I get up for a pee in the middle of the night. Dystonia and Bradykinesia is still very apparent in me but less painful.

Also received a phone call from Parkinson’s Org who had been given my details from my PD nurse to assist in my application for PIP so that was helpful.

My Wife has gone from part time 3pm - 7pm to full time 7am-3pm which helps the shortfall of me going from 37.5 to 22hrs and she works the same side of the City as me and I also work 7am - 3pm so she drops me off and picks me up.

Been the best 2 weeks I’ve had in 15 months.

good stuff mate,

Snap · November 2021

bertie said:

boogieman said:

Big Jon.

hmm not sure he was of my era ? I remember a big lad (ex forces ?) from Newcastle - not sure he was Jon..........

@Snap ; - Snap from Intersound days ? met for a pint in Castle Donnngton ? bought my strat pickups ?

yep, still here pal. How's it hanging?

Those pickups are still in the strat I built, only it's now in the hands of my youngest, who's nearly an adult.

strumjoughlamps · November 2021

Motherf*****r am I fed up.

10 days of isolating after a positive test and I’m short of breath, fuzzy headache and mild chest pain so went doc’s.

2 more weeks off work and on steroids and meds to treat bacterial pneumonia. 8 tabs a day for 5 days. So for the next 5 days I’m on 15 tabs a day.

RocknRollDave · November 2021

strumjoughlamps said:

Motherf*****r am I fed up.

10 days of isolating after a positive test and I’m short of breath, fuzzy headache and mild chest pain so went doc’s.

2 more weeks off work and on steroids and meds to treat bacterial pneumonia. 8 tabs a day for 5 days. So for the next 5 days I’m on 15 tabs a day.

Man, that sucks. You're practically Brian Harvey if you can neck that many pills in one day.
Hope the pneumonia clears quickly for you.

strumjoughlamps · January 2022

49 years old and today purchased myself a riser recliner chair. Bloody embarrassing man. And yes I know I shouldn’t be nor have cause to be but it is embarrassing all the same.

on the plus side it felt comfy and means I should have less (hoping none) falls when I get up. Being delivered Friday.

Dominic · January 2022

One of my best friends was diagnosed at 48 ,which is presumably the same time as you .........he's 60 now and still playing very serious standard tennis and skiing .
He initially deteriorated quickly ,then they got his medications well sorted and the difference was incredible .
The last ten years have been fairly consistent for him .
Never lose hope that medicine is advancing very fast in this field .

strumjoughlamps · January 2022

9 non accident falls in 2 weeks

some at work so I doubt it too long before work start considered finishing me in health grounds as I don’t think there is anything ‘easier’ that I can do.

on the plus side I have a right corker on my face makes me look dead hard

and some very bruised legs.

what scares me is I am on the max amount of current medication and the next level of medication you have to consider side affects and if it’s worth it.

Nitefly · April 2022

Haven't heard from you in a while, Strum, how's it going?

strumjoughlamps · June 2022

Nitefly said:

Haven't heard from you in a while, Strum, how's it going?

Yeah came off for a while then gradually snook back in through the kitchen cellar

.

im alright, I haven’t been, at one point specialists were looking at ALS and I was bricking it…

im like a walking pharmacy now, In fact I have neurology tomorrow and I’m expecting another med added to the list as I’m wearing off well before my next meds are due.

still working 3 days but currently going through the process of reducing to 2 days. I think they will either say yes or offer a settlement.

I use a walking stick most of the time, but I can also manage 9 holes once a week most weeks.

Have also had Mrs Strum go though a bit, she has a cyst in her ovaries so had to had a full hysterectomy and the cyst removed. When they weighed the cyst it was 3kg

3 bags of sugar in weight… it’s all been checked and no cancer. She goes back work Monday after 8 weeks off recovering.

We’ve made the house a bit more Parkinson’s safe and I have an electric bed downstairs now in a mancave/day room for when I can’t make it upstairs or when I’m in on my own and need a doze, although I also have an electric recliner in the living room which is lovely for 40 winks.

so dare I say it I’m quite settled at the minute, I know I’ll be knackered and out of action the day after work but I’m usually pottering about in the afternoon and fine the next day. That’s why I want 2 days Monday and Thursday because then I get a decent home life too. 2 days work 2 days non work 3 days recovery.

Nitefly · June 2022

Ha, still all there with your cough drops, then, as we say oop north!

Very pleased to hear your news, and I hope work will accommodate your 2-day week request. They do seem to have been quite helpful in the past, so fingers crossed for you.

That's a bit of a "wow" for the missus - 3 bloody kg?!

Thanks for the update, and best wishes - good to see you back with us

strumjoughlamps · July 2022

Got my HR meeting tomorrow RE reducing work to 2 days.

My first question will be "why has it taken since mid march to get this meeting?" Bloody ludicrous.

Anyways with the info I have I don't think my request can be refused but we shall see.

boogieman · July 2022

Fingers crossed for you. Let us know how it turns out.

strumjoughlamps · July 2022

boogieman said:

Fingers crossed for you. Let us know how it turns out.

Yep all good 2 days request accepted.

Then it got awkward.. basically when I returned to work after being on the sick I asked told my manager I don't want to work Fridays until I get a HR meeting as I know it's the 3 day work that's causing the imbalance in life.. 'that's okay' he said 'leave it with me I'll sort it'...

Well how he sorted it was to use my holiday hours, he was booking me off holiday every Friday. I found out a few weeks ago and questioned it but was assured it was just until HR meeting.

Well when that came up he out and out tried to say I had been booking it off.. so I stopped him there and explained what had happened to HR person that I had suggested the Fridays be a phased returned and I had never authorized the use of my holidays hours to be used, she generally looked a bit miffed.

Anyway a few other things got discussed and sorted and that was me done with a promise something will be sorted.

1 hour after me leaving the meeting manager came to see me all nice and told me everything was sorted. I logged into my ESS dashboard and my holiday hours had returned.

viz · July 2022

Glad that’s sorted!

strumjoughlamps · December 2022

Had my PD hospital appointment yesterday...

I'm going to be taking 4 less tablets a day.....YEH

Reason is because I now have to have a Sinemet/Entacapone combined tablet at a much stronger dose...... BOO

New concerns were.... Toes on my left foot try to go under the foot resulting in a balance issue and most of the time a fall.

My slowness really affects my swallowing which causes a feeling of choking (although I'm not actually choking) but it shows signs of potential food going to the lungs/pneumonia issues, so I'm being referred to specialist for that.

Spacial awareness and perception is going which is why I keep walking into door frames (got some nice brusies)

Grip in right hand is really suffering.

Howdy, Stranger!

Categories

In this Discussion

Become a Subscriber!

Parkinsons Disease

Comments