Klem

I was diagnosed with Parkinson's Disease in 2001, a few months before my 49th birthday. I went to the doctor because I noticed whilst preparing the Sunday roast that I could  not turn a potato in my left hand. I thought that maybe I had a trapped nerve. Several tests and scans ruled out MS and brain tumour. When I was given my diagnosis of Parkinson’s I was almost relieved….. little did I know what a cruel disease this could be. It does not kill you; it just tries to take away quality of life.

To be honest it had little impact on me for the first ten years.
My children were still very young at six and a half and five years old. I went to every single match in the school sport fixtures as well as attending all musical and theatrical events in which my daughter took part.  I could cope. I felt that it  was time to search for a treatment that did not rely on ever increasing drug doses to hide my symptoms.

My children had never really known me as anything other than poorly. I owed it to both them and my husband to seek ways to improve my quality of life. When I found out about the trial, I jumped at the chance to get involved. It was early 2014 when I heard on the t.v. about a small group of PwP who were undertaking a ground-breaking study in Bristol using an untried delivery system  to infuse an untested protein into the brain. The trial was seeking 36 additional participants, I was determined that I would be one of them.

My family and myself had many discussions about the benefits and risks should I join the trial. I felt it was a "no brainer"  My family felt that the risk ratio was too high as it included blindness, stroke, brain damage and even death. However, they felt the final decision should be mine. They would support me what, ever conclusion I came to. Some people participated for altruistic reasons, but I was totally selfish and if a treatment that reversed any aspect of PD was on the horizon then I wanted to be on the radar. 

First of all a few days in Bristol having more tests and assessments and getting to know the brilliant team lead by Alan Whone. Then I was offered a place on the trial. MRIs, PETs, CATs, filming and goodness knows what else took place before all of the gear went into my head during November 2014

It was not until I was going down to theatre that I appreciated what a nightmare I was putting my family through.  A nurse told me that my husband and son had decided to wait in the car park whilst I was in theatre (6 hours) as they wanted to be at my bedside when I came out of recovery. All of the equipment had gone smoothly, and I was allowed to go home from hospital Christmas Eve.

I had a hitch when the port going into my skull came loose and I had to have a further operation. The registrar at the time told me that the port was now so strong you could hang an elephant from it!
I started infusions during January 2015 and continued with them every 4 weeks. Coming off meds every 2nd visit to Bristol was gruelling but the improvement in my symptoms were already kicking in ( I was on the drug from the start, not the placebo)  This trial was not for the faint hearted, it was time consuming and exhausting and although we received excellent care it was dangerous with a constant risk of infection.

My hopes were high, Practically all the participants improved in some way, so we had a long way to fall when the scientific evidence deemed the trial a failure. We were gutted to say the least, as were the whole GDNF Team in Bristol. The trial should not have failed. 

To know there is a treatment that works - then have that pulled from under your feet is nothing short of amoral and cruel. The reluctance to listen to patients is shocking. Knowing that I had to move on I had the GDNF system removed from my brain (another 4 hours under the knife) and then had DBS Deep Brain Stimulation inserted (add a few more hours to theatre) but that is another story for another day.

I tumbled down the slope more than I thought possible, I have always felt positive about life and never really understood depression, so this was a big shock. It was not until I was introduced by a friend to  Sue and her team that I felt the desire to start the climb back to some kind of normality. Her approach was in stark contrast to many others that I have experienced. She understood the different and diverse needs of the Parkinson's community. I found immediate benefits after my first session. I entered the clinic unable to walk and left virtually skipping! The beauty of her treatment was that it was cumulative, and you could self-activate.

I was keen to try an intensive course therefore was delighted to go on a four night retreat in the New Forest. I have always had an interest in alternatives including Chinese medicine, reflexology, yoga, Pilates, The Bowen technique, Alexander,  you name it, but this was the first time I experienced instant success. The four days were filmed by Emily who captured the essence of the course beautifully. Doug, Sue, Steve indeed every single person involved, managed to combine their energy and enthusiasm with their knowledge of the  body and achieved quite inspirational results. This intensive approach allowed the ten patients of varying ages and stages of PD to thrive at their own pace. Sue and her team  from the clinic were exceptional. The sharing of information and their real desire to help PwP is laudable.

I  learnt so much on the course; It was thought provoking and good fun with a fabulous group of professionals and some real characters from the PD attendees.

We ARE in control of our own bodies!

I would encourage anyone suffering with PD to check it out!!
PwP – People with Parkinson’s