Sheila 2


My story begins at Spring Bank Holiday in 1995 when we were on holiday in Wales with our close friends. I reached across the room with my right arm and Zita said “Your arm is shaking”. 

I knew there was something wrong and I knew it was not a good symptom to have, so I ignored it for a year until we spent Easter with another couple in the Forest of Dean. I felt so ill all the time we were away. I was tired, unable to sleep and looking back, I was depressed.

On our return home, I saw the GP and was given a referral to the Neurology clinic at QMC three weeks later. Guy Sawle took about three minutes to diagnose me, I was 42.

As a Chartered Physiotherapist, I perhaps, had more knowledge than most, about my condition. Apart from having heard of dopamine and the substantia nigra, I really didn’t. It was a steep learning curve, it was cruel, telling my parents, my children, my brothers, my friends. 

Zita immediately said “This changes nothing. We are going to live exactly as we did before, it will not stop us doing anything” and it didn’t. Pancreatic cancer did though and she died in 2006, aged 58.

My marriage was in a very precarious state. We were separated for five months in 1996/97 and nearly lost it altogether but somehow between us, we rebuilt our relationship and are still together having been married now for 36 years.

Twelve months after my diagnosis I was back at QMC for a gastro-intestinal clinic visit and informed that I had coeliac disease. This is an auto immune condition, an intolerance to wheat protein. It causes the small bowel to react by inflaming and being unable to absorb nutrients, in my case, iron, as the food passes though. I had been anaemic from childhood and it had blighted my life. I was unable to get fit, to run, and to stay on my feet for long. Being pregnant was really hard, I couldn’t understand how other people coped with the exhaustion of having a small baby (1984) and then a toddler and a small baby (1987). Looking back again, all this was causing my brain to be under nourished, not helped by having occasional migraines of astronomic proportions. The first one was in Australia in 1982, when I lost my vision, followed by a numbness all down my right side, I could not speak and the nausea was dreadful. It was only when the headache started that I knew what was wrong. The next day I had another one and another three days after that, on the flight home.

After this diagnosis I stuck to a gluten free diet and within six weeks I had a normal haemoglobin for the first time in my life. How ironic, if you pardon the pun, that I have felt better in myself, since I have been diagnosed with two big medical conditions than I did for the first forty years of my life.

I am very lucky, I have had Parkinson’s for 19 years, and I am really well. No-one knows why my condition is so slow to progress. I believe it is because it developed from being anaemic and adherence to the gluten free diet keeps me well-nourished and my brain too.  I have no proof of this and I don’t think it will work for anyone else. But, it would be nice to be investigated and to find others in the same position, just in case we hold the key to helping everyone with Parkinson’s deal with our particular albatross. 


November 2014.