I've not posted anything for ages but


#1

Hello to All,

I've not posted anything for ages, possibly even several years! Thus here is something of an update, if it drags on I'll apologise now!

The key bits first, diagnostic ball started rolling in autumn 2008, PD confirmed June 2009. I'm now 53 y.o.

In terms of meds I've been on various sizes of levodopa & carbidopa, plus amantadine, plus entacapone. Never been on DA's. Currently on or around the maximum daily dose of levodopa & carbidopa. Now the off times can stretch up to 2 to 3 hours. My on times, whilst obviously not long enough, are generally pretty good. But under some circumstances I'm getting plenty of involuntary movements as a side effect of the meds. 

I'm still working full time, 5 days a week. Although last year was the first year since before I left school that I didn't work one single Saturday. I'm still driving, just not the miles I used to do, my wife now does most of the weekend and holiday driving. 

A typical working day follows this pattern, up at 05:00 take one 25mg/100mg Sinemet, strap a 1Kg wrist weight on to each wrist, spend 19 to 20 minutes doing various games on the Wii fit. 5:50 'ish' take 1 x 50/200mg Sinemet CR, 1 x 200mg Entacapone & 1 x 100mg Amantadine. Do Wii fit body test, on a good day I just about scrape a Wii fit age that's under 30!

Bathroom, breakfast, dress then 30 mile drive to work. 11:00 take 1 x 50mg/200mg Sinemet CR, 1 x Sinemet 12.5mg/50mg & 1 x 200mg Entacapone.  15:00 take  1 x 50mg/200mg Sinemet CR, 1 x 12.5mg/50mg Sinemet, 1 x 200mg Entacapone &  x 100mg Amantadine. 19:30 1 x 50mg/200mg Sinemet CR, 1 x 200mg Entacapone.

During the off periods walking is very slow, stilted and jittery, posture is stooped forward, fine motor skills pretty much out of the window! Nothing new in this for so many PWP's. Getting from horizontal to vertical in the morning has recently required a physical shove from my wife, not easy because she's only 5'0" and I'm 5'11" and 13St 6lbs, but we do manage a chuckle about it most mornings. Since being diagnosed I've lost almost 2 Stone! Mainly due to a reduction in snacking between meals in order to give the meds more favourable conditions to get to work.

Once in a while I get a day when the first pills of the day simply seem to do nothing at all! Thankfully those days are currently few and far apart.

Turning over in bed was becoming more of a struggle so we've recently bought one of the low friction fitted bed sheets. It has normal type fabric around the boundary, so you are less likely to slip off the edge of the bed, and the main central area is a slippery "satin" type material. It works very well, and whilst not cheap, I reckon it was money well spent.

About 18 months ago I raised the  subject of DBS with my Consultant who said he'd refer me if and when I decided to look into it a little further. Upshot was that I saw the DBS "team" at the John Radcliffe Hospital in Oxford last October and I'm now waiting for the appointment to go back for assessment which is likely to be at some point February - April this year.

I'll let you know how the DBS assessment goes.

Best regards to you all.

Tractorman.


#2

Good Luck with the assessment.  Your daily diary,, oh my god !, what a tough cookie you must be to stay so active when "on".  Love the satin sheets tip, simple idea but had not thought of it, off to the shops.  Take Care 


#3

Hi TeeHee,

"Tough cookie?" Made me smile! Or is tough cookie a new word for stubborn? From the early days of my DX I decided that my approach was going to be "I know I can't beat it, but I musn't let it win". I consider myself very lucky to have family, friends, colleagues and Boss that have all been so supportive throughout! Together they make living an as near to normal life as possible "dooable".

You take care too.