Parkinsons Disease

Dominic

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

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

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

strumjoughlamps

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

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

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

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

strumjoughlamps

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

Glad that’s sorted!

strumjoughlamps

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. 

merlin

I'm really sorry to hear this. Must be awful. 

CharlieShaw

A friend of mine got it when he was 39! He stopped working there and then. It’s Nearly 20 years ago now. I’ve not seen him in a long time. Keep thinking I should look him up. 

strumjoughlamps

I shall post an update as it helps me.

I have had my meds upped again, stronger and more of.. on the plus side when I am switched on I feel almost normal, when I am off I am a zombie, walking straight is a problem I bump into things, I don't fall much now tho. Off days will be up in the morning back sleep within the hour up again in the afternoon, potter around the house..

But lets focus on the switched on days, which currently has been all week.... GOLF GOLF GOLF, whatever it is about PD and golf that allows me to play is amazing, I cannot do 18 as I tire on the back 9 so I only do 18 if a cart is available, but wow can I play golf now, I have had lessons and it just dialled in everything.

VR has also been a surprise, or some will say not a surprise. When I cannot manage walking VR has been awesome, much better to be up swinging your arms and using your brain than be slumped in a chair. GOLF+, Synth Riders, Beat Saber, Virtuoso and Kingspray Graffiti keep me ticking when I cannot manage a walk.

Rocksmith has also got me into playing a bit of guitar again, using Rocksmith to learn a song helps trigger the brain to body problems I now endure. I still drum too but don't rely on my right hand to do much, I have actually improved.

Life is much better when focussing on the ups...

Nitefly

Thanks for the update, sounds like things are going as well as they can.  Are you still on the two-day week?

HerbieTheRadDorklift

Sounds great! How's the work? Managing OK on reduced income?

strumjoughlamps

Nitefly said:

Thanks for the update, sounds like things are going as well as they can.  Are you still on the two-day week?

HerbieTheRadDorklift said:

Sounds great! How's the work? Managing OK on reduced income?

Yeah still on 2 days a week work, if you can call it work an absolute blessing I work for local authority. 

Income wasn't reduced as such as when I went PT the wife went FT.

HerbieTheRadDorklift

strumjoughlamps said:

Nitefly said:

Thanks for the update, sounds like things are going as well as they can.  Are you still on the two-day week?

HerbieTheRadDorklift said:

Sounds great! How's the work? Managing OK on reduced income?

Yeah still on 2 days a week work, if you can call it work an absolute blessing I work for local authority. 

Income wasn't reduced as such as when I went PT the wife went FT.

Great that it worked out like that.

bertie

good to hear so many positives mate.  

Kittyfrisk

Amazingly positive news. The VR aspect is something that I probably wouldn't have considered but when you describe it, it makes real sense.
Hope that balancing your meds gets better & improves your quality of life.

strumjoughlamps

How quick damn PD moves on..

Hospital appointment today.. meds upped again and being referred to specialists in Nottingham.  I am now on last stage level 3 medication.. there are 4 levels and level 4 meds are bad news (hallucinations, sudden sleep attacks, confusion)..

Takes the piss

On the upside, I have 2 x 750ml bottles of Leffe and an egg custard in the fridge.