A New Year and ‘I’m still standing’ in the words of the Delta blues singer Mississippi Fred McDowell. The song accompanies me when I do my exercises in the morning. Happy New Year.

Looking back

I have probably had symptoms of Parkinson’s Disease now for 10 years – marked stiffness around my neck and shoulders and a variety of other symptoms at times including Type II sleep disorder, excessive fatigue, and general body and mind sluggishness.

Walking at times has felt as if I’m wading through treacle!

And yet I’m still standing and enjoying life. I play tennis and walk 10 miles with relish.

I’ve come to think that a variety of triggers has led to the likely changes affecting my dopamine producing cells in the brain stem which in PD creates muscle stiffness.

What were the triggers?

See my earlier blogs for the fuller picture and I hope read on? Please disagree or agree and ‘start a conversation’.

This is a disease affecting 145,519 in a total population in the UK of 66,465,641 (prevalence) – 18,461 new cases (incidence) presented in 2018 – probably an underestimate. In some reports up to 25% are misdiagnosed. It is dreaded as a diagnosis.

How many people on diagnosis are told, as I was, in the letter from the lead consultant neurologist at Basingstoke hospital, after I waited nine months for an NHS appointment:

‘Patients referred with possible Parkinson’s disease often have had symptoms for a protracted period, prior to referral, and unfortunately, at present, there is no treatment that modifies the course of the disease if it is detected at an early stage’.

Of course, one swallow doesn’t make a summer, but my experience suggests that I have been able to modify the disease expression and aim to modify its progression.

For me the onset seems to have started about 10 years ago. I think that about this time a sequence started which included abnormal gut bacteria – particularly Helicobacter Pylori, gut inflammation, leaky gut perhaps allowing toxins into the brain stem via the vagal and sympathetic system activated by prolonged stress – accounting for sleep apnoea – and to the eventual entry of a toxic protein alpha-synuclein into cells of the basal ganglia.

The possible sequence

  • The onset 10 years ago of prolonged stress as my marriage was breaking down and with serious illness in a loved one.
  • Type II sleep disorder with hyper-arousal.
  • Contaminated spring water and the establishment of Helicobacter Pylori, as well as a number of pathogenic bacteria and parasites, as was detected in a GI Map faecal test in September 2017, arranged by nutritionist Karina Athwal.
  • Successful treatment of the Helicobacter pylori with triple antibiotics. Associated gut inflammation with a Calprotectin level 8x times out of the normal range. This subsequently returned to normal. I altered my diet with the addition of pre-and pro-biotics.
  • I changed my diet to a dominant Mediterranean diet with added coloured vegetables.
  • Finding an intensive exercise program called warrior PD at the Hobbs Centre in Hampshire and building this into my daily routine. (Now available at integrated neurological services in Twickenham.)
  • Hope re-established, particularly after reading Norman Doidge’s book ‘The Brain’s Way of Healing’, with the description in detail of complete recovery from severe Parkinson’s disease.
  • Entering a research comparative trial, with spouses without PD, as control. Medication changed from L-dopa which was beginning to cause dystonia (muscle spasms). Realising that incremental dosages are usually given needed to treat the PD but also the build-up of a reactive -O-methyldopa toxin as a result of treatment! Changing my medication to Silegiline (Zelapar) 1.25 mg daily and Rotigotine (Neupro) 8 mg daily as a patch + plus Sterculia (Normacol) 7 mg sachet twice daily and Molaxole 1 sachet twice daily for constipation.
  • Finding that I had a sluggish bowel, with delayed colon transit time, and advice to treat this effectively.
  • Continuing care and expert assessment by the micro-biome unit at the Kings/Maudsley Hospital.

The result

Improvement in my general symptoms of stiffness by about 80% with good sleep and an active engaged mind. And renewed HOPE that I can maintain a good quality of life, whilst continuing to do most of the things that I love and bring me joy, including an active part in a loving relationship with Helen my partner, family and friends.

I have also written a poem to greet the New Year around an ancestral fantasy.

With love and good wishes, David.

2 thoughts on “Reflections on living with Parkinson’s Disease in the last year

  1. I found your recent blog very interesting. My husband was diagnosed with Parkinson’s about five years ago when he’d developed a tremor in one hand. In addition to this, he has suffered from Crohn’s disease for decades, which strengthens my belief in a gut/brain connection. His main concerns are his non-motor symptoms: sleep disturbance, fatigue, brain fog, all of which make life rather difficult. I spend a great deal of time researching ways to help him, and will now look out for the book you recommend. I obviously have no need to tell you about the effects this illness has on everyday existence. I try to persuade my husband to exercise more, but it takes him so long to do everything that his working day is too short to accomplish much at all, which sets in motion a vicious circle of stress.
    Thank you for your valued tips, and best wishes for 2019.

    Like

  2. Thanks Anna,
    Crohn’s disease is an inflammatory condition. It intrigues me that my friend P is completely without any symptoms after the removal of his large bowel for severe Crohn’s about 30 years ago. He believes that condition was triggered by stress related factors. Crohn’s in the research literature can be cured by a faecal transplant. So you are right that the micro biome is of importance in PD! And his muscles are likely to be deconditioned you need to exercise program gradually builds and led by a good sports coach or physiotherapist.
    Sylvia and John Dobbs at the micro biome unit at Kings, where I attend, run the research mentioned and detailed in the web download:
    Continuing care and expert assessment by the micro-biome unit at the Kings/Maudsley Hospital is part of their research: perhaps cut and paste into Google the following for more information:
    file:///C:/Users/David%20Beales/Documents/Mindful%20Physiology/Kings%20Parkinsons%20Research/Microbiome%20Study%20Description%20Adverta.pdf
    The research unit is looking for patients with PD and spousal controls.
    You might find that you are accepted into the program with your husband for a full assessment?
    With warm good wishes, David

    Like

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