My story so far …

It has now been 11 years since my diagnosis, although PD was certainly impacting on my life before then. I am now 56.

Bizarrely, PD may have saved me. I was working silly hours in a corporate job, driving 38,000 miles a year and I was ready to explode. After the official diagnosis it was no great surprise that I was conveniently laid off in a management restructure and forced to rethink my future.

Since those early dark days, I am now closer to my family than ever before and I treasure their love and support. Furthermore, I have changed career direction and now work in a job (in the field of education) that I really enjoy, working with some great people. PD is a real pain but it hasn’t really stopped me from having a great life. Indeed, in many ways my true ‘quality’ of life has actually improved – in particular, spending more time with my family than during my previous ‘corporate’ existence. I am quite happy and very positive and you can be too.

From day 1 I vowed to fight and overcome this disease. Sometimes that has been easier said than done, but I am still here and kicking! Of course I have times when I feel frustrated, angry and scared, but these occasions are few and far between. My life has had several twists and turns and I am a firm believer that things happen for a reason, so I am getting on with it.

It was quite a shock at the start of this new chapter in my life to be told repeatedly that ‘there is no cure’ and that I would be on a daily cocktail of pills for the rest of my life. Straight away I decided to carry out my own research into gaining a better understanding of the condition and how to fight and overcome it/live with it. I am incredibly lucky that my wife is active in exploring and using alternative and natural therapies and this interest and support has given me a boost.

The apparent lack of new drugs to combat the disease is very frustrating, but I believe at some point in the near future there may be some useful spin offs from the medical focus on dealing with other brain disorders, such as Alzheimer’s, but progress is slow. I live in the UK and have found the Western view of this condition to be somewhat limited. From the outset I have been keen to explore the use of natural therapies, to support the drug treatment programme, but my specialists have not volunteered anything in this regard. Their stock answer to the notion of alternative treatment has been along the lines of ‘there is no medical evidence to support this’. Granted, the lack of ‘officially endorsed data’ is yet another frustration, but the fact that mankind has been using natural remedies for thousands of years, in other parts of the world (i.e. the East), is evidence in itself. It may be that in some cases there is a ‘placebo’ effect, but if it works for a person, then doesn’t matter. Most of my improvements have derived from self-conducted research.

My own experience has been different and I hope you are able to relate to some elements of my story, so you may start each day with hope and not despair.

A few words on my condition – as all PD sufferers are unique:

Fortunately no resting hand tremor or ‘wobbly’ neck
Occasional stuttering (worse for some reason when on the phone)
Poor sleeping regime (but improving over last month)
Shuffling feet (if I miss my medication by mistake, even by just 2030 minutes)
Sharp pains in left hand and irritating pins and needles in right arm (but these are now dropping in frequency)
Freezing in doorways and in crowd situations
Occasional cramp in right ankle/toes
Aches in the knees
I am still driving and have now restarted playing golf on a 9hole basis (playing to about an 18 handicap – I have regained a really good tempo)
Handwriting has improved – now larger and flowing better

What have I tried?

I feel I have tried almost every permutation possible over the years! In the early stages, acupuncture was a very calming experience. In a similar fashion I have more recently tried reflexology to ease joint pain– I continue this daily using various self-help techniques on my hands, wrists, fingers and feet. The first major breakthrough though was stumbling across a company called Co-ordinated Therapies. They are a fitness centre who use a Swiss made (cycling) machine that teaches the brain to create new neural pathways.

However, the life changing event of the year resulted from coming across the book ‘Stop Parkin’ by John Coleman. I have followed his recommendation of trying Bowen Technique therapy, combined with Aqua Hydration treatment (from Australia, but there is a UK agent), to reduce body trauma and reset your body.

My wife has commented that she has seen a remarkable improvement in my physical movements (such as walking taller) and my mental/emotional resilience – she has seen my old self again. I have regained my energy, feel even stronger mentally, take far fewer painkillers and now sleep better. Most of my aches and pains are diminishing and from time to time I forget my worries and feel almost normal. My talking has also noticeably improved.

Another inspirational book worth reading is ‘Road to Recovery from PD’ by Robert Rodgers, which is an absolute gold mine of ideas and experiences. For example, I am now trying magnesium tablets to combat muscle cramps and this is actually working. Similarly, my painful toe dystonia is relieved following a night time homeopathic massage using marjoram.

The following section outlines various aspects of my daily routines.

Drugs taken:

Sastravi, Amantadine, Sellegine, Ropinrole, Sinemet.
Supplements taken:
[Anti-oxidants] Grapeseed Extract, ALA.
[Brain Function and Memory] Co-enzyme Q10, Vinpocetine, Gingko Biloba.
[Joints] Glucosamine, Cod Liver Oil.
[Anti-inflammatory] Turmeric
[Other] Shilajit, Multivitamins with Iron, Vitamin B Complex, Folic Acid, Ashwagandha, Selenium, Bach Flower Night time Rescue Remedy, Aqua Hydration Formula, Moringa, Omega 3 Fish Oil. Vitamin C.

Other tips:

Leave main protein meals until the evening (to avoid any detrimental impact on the effectiveness of levodopa drugs during the day).
Sing to yourself in the car (to strengthen your voice).
Be strict on sticking to your medication times.
Keep a daily journal, set daily targets and record how you feel during the day.
Try and maintain a happy state of mind. Just pause and look around – things could be a lot worse, yes they really could. Given that news on TV is largely bad news with seemingly an ugly obsession on how many people have died in any given incident, I just follow sports news and I feel better for it.
Start a new hobby – I am really getting into photography, for example and have made new friends as a result.
Listening to music (in my case, rock) has been a constant companion throughout my life. It always picks me up if I ever feel a bit down and just makes me feel so good.
Exercising as a regular routine is so vital and I cannot emphasise this enough. I know that I really should do even more, but I manage daily stretches, light weights and use an exercise bike.
Walk as much as you are able, set small achievable targets, walk as fast as you can and make sure you swing your arms. Try using hand weights to promote the arm swing.

Finally, I urge you to explain your situation to friends, family and work colleagues at an early stage, and not to hide it. After several years of denial, hiding myself away and losing touch with friends from my past, I eventually revealed all a couple of years ago. I felt so much better – in fact it was a real relief. But it was equally important for my friends who had been concerned and now understood the reasons for my behaviour.

Good luck with your journey and never give up.

Mr C
January 2019