It's not the end that counts but how you get there


#1

I live in Canada in the province of British Columbia in the city of  Langley, a 1/2 hour car ride from Vancouver.

What I have to offer, and by the way i am not selling anything.  I am here to share my experiences which i hope will move you perhaps towards a different place.  For some you may all ready be there. I am positive that others have had similar experiences as I.  Although i am not able to make a physical presence, I hope that these spinets of my journey will inspire those of you that live with PD..................................... Anyway  this is my mission....

I have had PD for 14 years.  My main interest in joining your forum is to promote the use of alternate forms of therapy  that have assisted me, as my PD has progressed.  I fully understand " what works for me may not work for you" contrary to achieving sexual equality, we as the recipients of PD do not always exhibit the same symptoms or the same reactions. As it is said especially in your part of the world.... "what is good for the goose may not be  good for the gander" .........I hope that just being exposed to different experiences  will  perhaps motivate  those with PD and even those that do not have PD  to  an  increased awareness of ones ability to cope and to continue  to enjoy and be enjoyed by others.

One of the most traumatic yet latent outcomes  of Pd in my experience, and I know this is a common occurrence, is the loss of self esteem and  self respect.  The emergence of this non physical  but emotional state of mind can be attributed to many  variables, some predictable and others only attributable to ones  individuality. It is commonly said that those that have PD  as individuals do not exhibit all the same symptoms, although getting through a door way especially when the door is opened is common for most of us . That's another story.  The most identifiable symptoms of PD are tremor related. Those that have this manifestation of  the continuous  constant shaking or tremors carry a heavy load. I myself only experience tremors when I am  exhausted and weak, I have other perhaps less identifiable symptoms that have greatly impacted my life. The  sight  of this physical manifestation of PD on the observer immediately establishes an assumed outcome. .... That there is something wrong with this person, and in 99% of the time the visual interpretation of this uncontrollable and involuntary movement defines itself as being symptomatic of some  medical condition.  There was a time when I intentionally made a point when the opportunity presented itself of making sure that when I was confronted with that piercing  and inquisitive “glance”, that i made it known tat I  had PD.  Now a days thanks to the media exposure of PD by  celebrities who share in our new direction in life, I find that a lot of people approach me and are usually more knowledgeable and informed and are able to relate those symptoms as being attributable to  PD.  Yet there are a few who interpret those visuals as being associated with being mentally challenged or even inebriated.  Even more so when you are  not in possession of a cane (that's another story).  Usually the conversation would go like something like this "Hey, I know, you have Parkinson’s just like what’s  his name….”.  Or on  a more personal level  “my uncle had Parkinson’s…. how is he doing …he died last year”   For the longest time I would always ask “how old was he when he died and how long did he have PD for?” My main focus being the anticipated end of the road and not the journey that would take me there.  A motivational therapist told me  after 5 years of focusing and trying to come to terms with the  end , and at the start of my journey.... “people with PD all end up in the same place, what is important for  you and even more so for those that support you, is how you get there, emotionally and physically.”  Has your journey started or are you  still trying to figure out how it is going to end?


#2

Hi

I have just read this post.  Welcome its nice to know that we share the Forum with people from all over the world.

I have had PD for 10 years.  I try to stay positive.  I live on my own, I still drive and only retired two years ago  I  go horse riding do gardening and am involved with my local PD Branch which I find very rewarding.   What I find frustrating is when my meds run out before the next lot are due to be taken, this happens more and more now.     I find myself still apologising for the fact that I have PD I say things like 'sorry I have Parkinson's Disease'  if I might be slow or fumble with change when I pay for something.  Why should I apologise but I do.  I have also been in the situation when meds are not quite working and I feel that people would think  that I am drunk by the way they look at me.   

 

 

 


#3

"My main interest in joining your forum is to promote the use of alternate forms of therapy  that have assisted me"

 

Welcome to the forum Cycle big grin

I'm interested in the alternative forms of therapy that you say have assisted you.

 


#4

Hi Cycle

 

Yes I would also be interested in the alternative therapies that have helped you.


#5

I have had Parkinson's for 14 years and for the most part have outwardly tried to keep positive.  The last two years have been difficult as my Parkinson's is bound up with arthritis now.  Early last year my right ankle was operated on, which meant 3 months in plaster - non weight bearing, just to make it more interesting!   Prior to that I had ultrasound to try to find out why my leg circulation was poor, and discovered I needed an urgent hysterectomy.  Not being able to do things for myself was the worst time in my life.  I have pushed myself to try to keep the life I had but I know I am on a very real slope downwards.  I feel it notch by notch.  It is hard trying to be cheerful when I feel so miserable inside, and I admit to feeling sorry for myself and asking "why me?"  This I must stop as I do know so many others are worse off than me.  But now that I can't drive any more, have many unexpected 'off' times, and can't keep up with the things I liked to do, my life has changed dramatically.  I know I have to get used to it - why can't I accept it?  Why can't I realise this is the best it's going to be for a while, and accept it, before it gets worse?  That's why I've come onto the forum really, I suppose, it's an effort to accept things as they are without losing the fight to keep independent.