Making Sense of my Parkinson’s: Treatment and Support

In my previous blog, I wrote about the impact of my Parkinson’s diagnosis – and the information which would have been useful to receive at the outset. Making sense of Parkinson’s is a long journey however, and one which extends far past initial diagnosis to treatment and daily life.

So what has life been like since?

Three years on from diagnosis, when I had become very slow, had difficulty turning over in bed – I am now independent, walk 10,000 steps with  ease, enjoy life including tennis, holidays abroad and at home, painting and writing, a loving relationship with my partner Helen and family of four sons and their partners/wives with eight grandchildren. This is not to say that I do not feel terribly frustrated at times by slowness of movement and problems with doing up buttons and shoelaces. But I feel most alive when playing tennis – the times when my body just gets into gear and I can hit the ball without knowing quite how I got there. Muscle memory kicks in automatically and I learn that movement can be enjoyed consciously as well as automatically.

I know that I need a drug regime regularly. This has included: Sinemet Plus 100/25 -1/2 4 times daily; Neu-pro 8mg daily; Rasagiline 1mg daily; DCHA 1 g twice daily; Amantadine 100 mg daily; Molaxole sachet 1 twice daily; Normacol 1 twice daily. I get going with an exercise routine for each morning including stretches and weights, and walk each day including a longer walk three times week. I love painting water-colours as a fresh hobby, and count my blessings daily.

And yet was I missing anything? I felt I needed the opportunity to step back, review and refresh my living well with Parkinson’s approach. For:

“PD is a complex, multidimensional condition with cognitive, psychological, and social ramifications, as well as motor and non-motor signs. The clinical manifestations are only partially amenable to pharmacological or surgical treatment. This makes it impossible for one healthcare professional in any discipline to cover all complexities and diversities of symptoms and to deliver all management options.”

A multidisciplinary team was needed. The centre I found was not in the UK, but in Italy at the European Centre for Parkinson’s. I booked, guided by the expert advice of Sara, the Centre administrator. The founder Alexander Reed, who himself has had Parkinson’s for 13 years, shaped the present programme and contributed to the research paper cited at the end of this blog post (Recommendations for the Organisation of Multidisciplinary Care Teams in Parkinson’s Disease) recommending how such program might be run. I will be detailing my experiences in Italy in my next blog, but for now – I’d like to share the groups and support that I have found in the UK.

The time to review chronic illness is limited within our NHS. Since moving from Hampshire to Kew Gardens in each locality, I do find some services to reduce the impact of Parkinson’s in my life. I am not told about them by health professionals, but seek them out through enquiry in the locality.

What have I found?

• In Hampshire, I found the Warrior PD exercise class running at the Dobbs Centre. There was an excellent Parkinson’s nurse at Winchester Hospital. I found a research programme running at Kings Hospital by Sylvia and John Dobbs looking at the micro biome in people with Parkinson’s and their partners. I had already confirmed that I was carrying Helicobacter Pylori in my gut which was treated and eradicated. This is an added risk factor for Parkinson’s. With all of these activities, the Parkinson’s UK website and patient forums were invaluable.
  
  
• After moving to Kew in London 18 months ago I found, near me in Twickenham, after contacting Nick Ephgrave for Parkinson’s UK, the Integrated Neurological Services (INS) offering exercise and physiotherapy. I also found a variety of courses and the friendship and support of founder Ellie Kinnear; a local gym (The Cambrian) with a trainer: nutritional advice from Karina Athwal and the great support of the Avenue Club men’s group in Kew, led by Gary Freer. 

For further reading, please see the article below – to which Alexander Reed, the founder of the European Centre for Parkinson’s contributed. I will be detailing my experiences at the European Centre for Parkinson’s more fully in my next post.

(Recommendations for the Organization of Multidisciplinary Clinical Care Teams in Parkinson’s Disease J Parkinsons Dis. 2020; 10(3): 1087–1098)