I'm with the ostrich!


#1
I am 65 this year, male and was diagnosed in 2004, although I had been ill for some time before that.

I guess it goes back to the mid 90s when I had every kind of test to try to get to the cause of severe stomach pains and headaches, random blackouts and so on that I was experiencing on an ever more regular basis. Strangely, it was worse the more I relaxed. Finally, I was diagnosed with Clinical Depression.

I had had a business into which I had invested a lot of "me" and which had been very successful and employed 63 people. I was caught wrong-footed in '89 and we went bust: 63 folks I cared about lost their jobs and the bank pecked our bones clean: house, savings, the lot. Along with wife and two kids we went overnight from a beautiful thatched farmhouse to living in a touring caravan "hidden" in an industrial unit at night.

With considerable support from a core of my ex-employees and long-suffering wife I set up a new business. In the beginning it was really tough with no money, scratching about to find the wages each Friday!, but we worked very hard and finally got out of the woods: business making money, bought another house and I was able to stop "running in my sleep".

And that is when I started to get these funny symptoms.

Neither I nor anyone who knows me would believe that I would ever "be depressed": it just isn't my nature. My clinical psychologist explained that clinical depression isn't an illness brought on by mood, but mood brought on by illness. In short: I wasn't producing seratonin in sufficient quantity and apparently without serotonin we are hard wired to top ourselves (bizarre.......), although it seems that adrenaline is a workable substitute for serotonin. So, it seems that all the while I was proverbially swimming up the waterfall and fighting to build the new business I was literally living on adrenaline and as soon as I eased off I got ill!

I handed the business over to my Number Two and crept off to a dark place for a year or so whilst the medics fiddled about with the drugs to find the one that worked.

Eventually they got me back to something resembling "me". In the meanwhile my erstwhile No 2 was making a success of the business in his own right so I couldn't really go back but I missed it a lot so we moved away so as to make a complete break from it. The house we bought needed an extension so that was to occupy me.

It was during that work on the house that I started a whole new set of symptoms: I couldn't shake an aerosol can, walking up a ladder at 45 degrees I'd set it bouncing like the Millennium Bridge, I could no longer judge when things were level or upright, my spatial awareness went to pot so I started backing into things!

The diagnosis this time took no time at all. My father had had Parky's so I had an idea of what that was going to be all about, although I was assured that the control drugs were much better than they were when he died in 1986.

My attitude to my Parky's is to ignore it as best I can, although there are limits to that, I agree.

One thing has happened, though, and that is that I am at ease with my own mortality. I have no religious faith but my view is that if we regard life as a gift then when I don't want this gift any more I shall be wanting to give it back!

I will admit that I think I've had it easy so far. With the drugs I have been able to largely ignore it. We built a new house (OK - I helped the builder but did work on it full time!) and we incorporated things to make life easier for me and my "carer" in the fullness of time (including a ground floor room with an "accessible" en suite shower room we call the "DDS" - or Dignitas Departure Suite!)and I have kept myself as busy as a busy thing all the while with one thing and another. At the moment I am building a fairly revolutionary (oh dear - the pun!) new design of engine which came to me a while ago and that is keeping me out of the pubs for the time being. As I sit here, though, I am approaching pill time and my typing is getting very laboured: the meds just don't have quite the reach that they used to.

I have a "bucket list", some of which I have taken care of: I have done a skydive and a bungee jump (I am petrified of heights!) and I have bought myself an outrageously self-indulgent sports car which I drive only when I am feeling good and will sell when that doesn't happen any more. Top of the list is that I want to meet my grandchildren. Both our boys have by any measure become very successful in their own rights and have delightful fiancées and are both getting married this year - so I can't complain of a lack of cooperation from the family!

There - I am as lucky as anybody with this darned illness can be, I do realise that. I haven't mentioned enough my wonderful wife of 42 years' patience! Without her calm, serene, forbearing selflessness three of us would be so much the poorer.

PS - my drug regime for those who understand these things:
Madopar 62.5mg dispersible first thing
Pramipexole prolonged release 3.15mg last thing
Rasagiline 1mg getting up time (theoretically - can't get them...!)
Levodopa 125mg, carbidopa 25mg and entacapone 200mg seven times a day
Mirtazapine 15mg last thing (Clinical Depression)

#2
Welcome, Topvaux --
You have had quite an introduction to this disease! I feel sure I could not have fared so well if I had had to face the financial and professional difficulties you did during the onset of PD. My case has been going on for 15 years, but for most of that time I enjoyed the luxury of retirement from my teaching career as well as the company and support of my loving husband, who died of cancer last year.

After all these years, a large dose of Pramipexole (6 mg.) and a small dose of Sinemet (0.5 mg.) still keep my symptoms under control; and I assume that Amantadine and Azilect (rasagiline) must be working to delay progress, because strangers do not guess I have PD. Thus far I have not experienced depression, though I know it is a common symptom.

Best regards -- hope to hear more from you -- J

#3
hi topvaux,

welcome to the forum you will find everyone will try to answer any questions or help with any probs you might have, i was dx the year before you when i was 43 i am on similar meds rasagaline 1mg, pramipexol 3-15mg, amantadine 100mg 2 x daily, sinimet cr at night and stalevo 100mg 4 x daily i also was on the apo-go pen but have stopped using it i seem to be stable at the moment although i suffer with dyskinisias every day the amantadine seems to settle them down, i have learned to take each day as it comes i have had to give up my job but thats life hope to speak to you again . sue.

#4
Thanks for the welcome, lilly and J.

I'm generally not very good at forums, groups or whatever and I don't spend much of my time thinking about PD, but I just hoped some newbies might be encouraged to know that there is life after diagnosis!

Not meaning that to sound churlish or ingracious: I am sure we will converse more in time and I shall look forward to that.

Chris