Lesley

I was diagnosed with Parkinson’s in 2004 at the age of 43 when my two sons were 11 and 13. In some ways this helped me deal with the diagnosis as I knew had to be strong for the family. If I was seen to panic so would they.

I have always been a fighter, or a feisty cow as my sons would call me, and I was determined that Parkinson’s would not take over my life – not if I had anything to do with it. Within a couple of years of the diagnosis I started to experience a worsening of my symptoms and developed excruciating cramps and muscle spasms in my legs and feet which would hit me as soon as my medication wore off and every morning when I waited for it to take effect.

When I saw a request for volunteers for a groundbreaking new trial my eyes lit up. I applied to Bristol for more information and within days was invited down to assess my suitability. The trial involved novel brain surgery, which carried a risk of brain damage, stroke or possibly death, to insert a newly designed delivery device with catheters reaching deep down into the brain, to  infuse an untested protein. The lead clinician, Alan Whone commented that madness was not a pre-requirement but it was a useful attribute for anyone considering taking part.

 I knew that this was what I wanted to do. However I was aware that this would have a huge impact on my family. I had very mixed emotions but when he said I could join I knew in my heart and soul that this was the right thing to do.

Parkinson’s takes over your life and affects just about every bone muscle and sinew in your body. It is unrelenting, indiscriminate and downright cruel. It ensures limited sleep, variable levels of pain, tiredness, fatigue and general feeling of lethargy. But the cherry on the top of the cake is the fact that there is no cure, it is degenerative and debilitating. The only guarantee is that it will slowly but surely reduce your quality of life to worthless and cause  untold suffering to those you love. I have no desire to inflict myself on my sons in later life - I have my dignity and their futures to consider.

Taking part in the trial represented hope, something Parkinson’s could not offer me. The future was bleak so I figured that nothing could possibly be worse. I underwent surgery in February and started infusions a month later in April 2015.  I was initially on placebo so noticed no difference for the first nine months.  Trips to Bristol were made on a four weekly basis and every other trip (i.e. every eight weeks) we had to present to  Southmead Hospital completely unmedicated having stopped all drugs 24 hours previously.

These four weekly visits would generally leave me exhausted and find me crashed in my favourite armchair from arrival home to bedtime. After my second infusion of  GDNF I arrived home to find my family assembled in the kitchen (a usual state of affairs).  I was busting to use the loo and made my way to the downstairs facility only to find that somebody had beaten me to it. As bladder urgency is one of the many features of Parkinson’s my need had become great and I ran up the stairs to the bathroom. I appeared back in the kitchen moments later to a round of applause and enquired what the occasion was. I was informed that I just ran upstairs. To most people this is an everyday occurrence but generally after a Bristol session my progress up the stairs would be slow and only accomplished on my hands and knees.  To my family this was a miracle.

My symptoms continued to improve and I began to drive longer distances having had to shorten my journeys due to leg cramps, I could walk a lot further had more energy and generally felt more alive than I had since before my diagnosis.  Family and friends commented on my new lease of life and I also reduced the level of drugs I was taking.

Disappointingly, despite our loud protestations the trial was deemed a failure although a documentary which followed its progress and was aired on BBC2 showed an entirely different picture.

Taking part in this trial took an enormous amount of courage, faith in the clinicians and belief in the strength of my family. It was not for the fainthearted and involved numerous terrifying scans,  I was fully aware that I could hope for an improvement but I could not expect one however to go through so much, experience a treatment which completely changed my quality of life only to have it snatched away was the cruellest possible outcome.

Having been receiving infusions for almost 2 years the bond between the participants had grown and we’ve kept in touch to this day. Our battle with science to prove that patient experience has to play a much more important role in medical research continues.  But it is an uphill climb and our small band of warriors face a mammoth task to persuade the world that GDNF works. We have coped with the depression caused by the “failure” of the trial and the lack of any provision for our welfare once the trial had concluded, by remaining strong for each other.

Despite the improvements offered me by GDF I still suffered from debilitating low back pain and frequent spasms, general muscle stiffness and fatigue. Each morning I would struggle to sit up in bed and then brace myself for the pain that would surge through my body when I tried to stand up. I would then stand still for some time before plucking up the courage to walk - every movement was agony.

I also had troublesome dystonia in my left ankle and was unable to move it without assistance. Added to this, I had surgery on it a year previously for a torn tendon followed by what was described as “intensive physiotherapy”, but which in reality consisted of five consultations where I was handed a sheet of exercises. Each of these exercises required a level of balance and muscle control that Parkinson’s had long since taken away from me but this made no difference.  When the physio told me that I just had to try harder to move my ankle and showed no understanding that my brain was stopping the movement I realised I was wasting my time.

Then I was introduced to the Sue at the Romsey Physio.  Through a fellow participant on the trial I was invited to attend a four-day Be Activated course at a retreat in the new Forest. I knew nothing about the treatment except what I read on the Internet and had discussed with Sue prior to attending. Having tried every treatment imaginable from osteopathy, chiropractic, acupuncture and physio to reflexology, Reiki, Bowen technique, to name but a few I decided I had nothing to lose and went along with an open mind.

Four days later I emerged a new person. I had learnt so much about myself and how I alone can influence how I feel and how I cope with life. This was whole new outlook.

The stark difference between the physios at the retreat was mind blowing. Each one believed in what they were doing and was obviously delighted when progress was made.  Every  improvement, however slight, was considered an achievement and I began to believe they could help me.

The treatment was uncomfortable and at times excruciating, but always inflicted with a smile and an encouraging word or two, which eased the discomfort considerably.  At all times it was made clear that I could stop whenever I wanted. However, once the benefits became apparent no level of pain would deter me from further treatment.

After my first session I was absolutely amazed at the increased level of flexibility I experienced and additional energy. I found myself rolling from side to side on my bed after day two having not been able to do this for many years.  I could also put on my own socks which may sound trivial to the able-bodied but is a major breakthrough for me, and getting out of bed in the morning no longer worried me .This continued throughout the four days and having been physically and cognitively tested on arrival I was keen to undertake the test again at the conclusion. The results were staggering and have encouraged me to continue with the activations.

Two months after the end of the course, I still feel much more supple and flexible and whilst backache still plagues my life it is much less intense and I am free of the low back spasms which would leave me breathless.  Having had back problems since around age 11, any progress at this stage is marvellous and I have been amazed at the level of relief I have enjoyed following the course and having continued with the activations at home each day.

No other treatment has given me such pain relief even though I have had lengthy and very expensive courses throughout my adult life.

I cannot praise this treatment highly enough I arrived in the new Forest with backache, a completely rigid ankle and very tight muscles in my whole body.  I left still with Parkinson’s but with a new belief that I can fight the symptoms with something other than drugs.