After a few years of just reading the messages here I've finally got round to joining! Please stand back I don't know how big this is going to get.....
DX route began in September 2008, I was 44 almost 45 yo, with a trip to the GP. He reckoned PD was the problem, but naturally was not going to stake his reputation on it, so quite logically I was referred to the Neuro at Stoke Mandeville Hospital. Saw Neuro late November, began Sinemet+ 25/100, 3/day straight away. Had MRI brain scan, blood tests, plus tests for Wilsons Disease. Once all the other options had been ruled out PD was confirmed June 2009.
Stayed with initial meds for 3 1/4 years. In March this year Neuro stepped up meds to, Carcareldopa 50/200 MR 3/day + 1 Sinemet+ 12.5/50 with first MR of the day to get me "started" in the mornings.
I'm still working in an Agricultural Machinery Dealership, I know, you'd never have guessed from my name! Up until May this year I had been Service Manager. As PD marched on I was offered the opportunity of a new post created just for me as Service Support Manager, just as much work but without the extreme pressures we face in this industry in line with seasonal demands. It's difficult to face a farmer telling him he's got to spend thousands on a tractor repair when your left arm is off doing it's own thing!
I'm both very aware and grateful that I've got a very good employer in this context. Long, hopfully very long, term if things get to the point where I can't drive to work, most of my new role could be done from home. Current drive to work is just under 30 miles each way.
PD is pants of that there is no doubt! I've always liked to know what's coming, when and for how long etc etc. You just don't get that with PD. I had cancer back in 1988, that was by comparison easy to deal with. A few tests, a scan, an op, chemotherapy, a scan, job done! Just 10 years of monitoring followed.
Daily routine, weekdays any way, up at 05:20, 20-22 minutes on the Wii fit, meds at 06:00, shower, shave, breakfast, run/jog round the corner to where my pick up truck is parked (can't park outside house, road too busy) drive to work for 08:00 start. Working day anything from 8.5 to 12+ hours. Then head for home.
Thanks for reading. Hopefully you haven't nodded off with boredom halfway through!
Regards Tractorman, the long winded!
Welcome to the site. Good you are now a partaker and before you know it you'll be involved in all sorts of discussions , some serious , some light hearted.
It's a privilege to hear many peoples stories and we can learn so much from a person's actual experience, rather than just be told by a clinician.
It's good your employer is accommodating, this makes a huge difference, and gives you optimism for the future.
Look forward to seeing some more posts from you, now that you've joined the club.
All the best.
At the moment I don't really know what we feel like. about four years ago after a series of T.I.A.s ( Mini- strokes). my husband was diagnosed with Vascular Dementia. He was put on Galantamine tablets and we've just struggled on from there. Then Wilf started falling and having difficulty walking. We were referred to a 'Fall Clinic' where the consultant on just looking at Wilf, said " Parkinson's"? We, of course told him that we'd never been told this and so a DATscan was arranged. This apparently shows if there is a lack of Dopamine in the brain and a few days ago we got the results, that, WIlf seems to indeed have Parkinson's. He was prescribed Madopar 12.5 mgs. I don't know if I should be relived at the diagnoses or more worried than ever. Have we missed 4/5 years of maybe valuable treatment for the wrong disease etc. I have been on the Internet of course and I am more puzzled than ever. There is Parkinson's Demntia. Vascular Parkinsons, to name only two. Wilf has all the symptoms. i.e. The mask like expression, great difficulty walking, a slight tremor in one of his hands. Slowness of speech and a very quiet voice, I can hardly tell waht he is trying to say. Many falls, usually falling backwards and a slow shuffling gait.
I'm sorry to go on at such length, but I don't know where to turn. It is over a month before we see the specialist again.
Looking forward to contacting someone on this site as I'm sure We will after reading all the lovely letters from fellow members.
Just finished reading your post, your employer seems to be on your side.
I was dx 2 months ago, What ive experiecend has been hell
My employer is thinking of terminating my contract before i get a desicion from DVLA regarding my pcv license. Getting Benefits going round in circles Taff29
Some employers seem to go into "panic mode", I personally think they fear costs & liabilities, rather than drill down and learn the facts.
I wish you luck, and hope you can make some headway. What size of company do you work for?