Hi Everyone


#1

My first post on here to say “Hi” and to introduce myself.

I’m Steve and I’m from SE Kent.  My journey with Parkinson’s started with my diagnosis a few months before my wedding back in 2015.  For about a year proceeding, I had a tremor in my left hand and in recent months my left leg would drag slightly when walking.

At first all was fine following the diagnosis, I was prescribed Sinemet and Azilect.  However in March 2016, I was additionally prescribed a DA (Ropinirole).   This is when the fun really started,  within a few weeks the meds seriously messed with my head and I totally went off the rails, spending compulsively and secretly chatting on Adult Dating Sites.  I felt invincible and gave no thought to the implications or consequences of my actions.   Then after just seven months of marriage, my wife found out the full extent of what I had been doing and not surprisingly I was thrown out of my house.  Not long after, my wife instigated divorce proceedings
.
My current situation is that I’m divorced, have a substantial credit card debt and am lodging with a work colleague.   I went through a stage of contemplating suicide because the Ropinirole had destroyed my life and left me with nothing.   Luckily now, I am off Ropinirole and am taking a larger dose of Sinemet instead.   The PD hasn’t stabilised yet and my walking is laboured with a recent tendancy for my left foot to turn inwards and for the toes to curl under.  The tiredness and fatigue is overwhelming.

Despite all this, I have changed my mindset to look on what’s happened as the chance to make a fresh start and to embrace life rather than to focus on what I’ve lost.   Sometimes I have a wobble but generally I cope with the PD stoically and with plenty of humour.
 


#2

Hi Shado 1980

You really have been in a dark place and yet managed to fight your way out of it. Your reaction to Ropinirole was extreme but not unheard of.

You deserve a lot of credit for making a fresh start and embracing life. Stoicism is important as is a sense of humour and both are great weapons to fight this dreadful disease, with its strange and all so variable symptoms.

Good luck to you and keep fighting.

Jules77


#3

Thank you so much for your kind words and understanding.   I find being open and good humoured about the PD really helps.  

For example I will make my boss a cup of tea and take it into him saying "There you go Mr Bond, one cup of tea, shaken but not stirred".  Gallows humour maybe but it ensures a good working atmosphere in our office and due to my cheerful demeanour, my condition is never an "elephant in the room" with my colleagues.

We can't do much about this wretched disease but there's lots we can do to change how we react to having and dealing with PD.

 


#4

my, you have had a rough time lately. Tremendous strength of character to come through all that and still be standing.

as you say, how we react to it makes a world of difference


#5

Different drugs do different things to people, there was one that had me halucinating but not to your extreme Shado.  Fotunately we nipped this drug in the bud early and moved off it.  Madopar seems to be the drug I get on best with.


#6

Thanks Daffy for your kind words.  It's not until a life changing event such as this that we realise just how much inner strength and resolve we actually have.  It really wasn't until the Decree Absolute came through which coincided with my head returning to normal after the ropinirole that everything really hit home.  My GP referred me for CBT sessions which helped greatly in coming to terms with the guilt and grief for the loss of my marriage and not being able to look ahead.

Strangely though, I've never let the Parkinson's get to me.  I accept that in time I may not be able to do the things that I used to so I focus on the things that I am still able to do and the things that I would still like to do. 

@ Cruisecontroller - Madopar?  Not heard of that,  is it a DA?  Good to hear that you're on a drug and dose that's right for you.   I'm getting there with my Sinemet  - 4 and a half tablets during the day and a controlled release tablet and a half at bedtime.  It's taken a while to get the dosage right though.


#7

So impressed with your attitude and good humour.  Just had a "blip" and entered the world as a whimpette now back on track.  Great supportive people on this site, back you on your good days but more important are there to give you a loving boot up the khyber pass when Parky starts to win.  

Humour as Jules 77 confers a powerful weapon, fill your boots and carry on posting.


#8

Thanks TeeHee,  having people around you that understand and empathise means so much especially on off days when we struggle.  Also the reassuring feeling that you are never alone with PD really does make a huge difference.