Gentle Release Therapy Supporting Motor Neurone Disease

We are extremely grateful to Scott for taking the time to share how Gentle Release Therapy has been supporting him.

I was diagnosed aged 42 in January 2012 with a rare familial type of Motor Neurone Disease (Kennedy’s Disease). The prognosis is a slow rate of progression and a ‘normal life expectancy’. Kennedy’s Disease typically affects the lower motor neurones unlike MND causes neuropathy in the distal limbs. In my case I have little feeling in my feet, lower limbs and fingers. The diagnosis is far simpler than MND and is confirmed by a blood test. Although other tests are performed many neurologists never see a case of Kennedy’s Disease. Kennedy’s Disease causes a positive Romberg (imbalance with eyes closed), inability to close the eyes, muscle weakness and wasting of the tongue, plantar reflex test has no response. Fasciculation’s under bright light can be easily seen in the distal limbs and over the shoulders.

Most males who are affected do not display any symptoms until their late 50s or 60s. Females are carriers of the x-linked gene and can present with mild symptoms. My mother is exceptional and has many of the symptoms presented in males. Kennedy’s Disease symptoms vary from individual to individual but the symptoms include Type II Respiratory failure leading to use of Non-Invasive Ventilation (NIV), fatigue, cramps, fasciculation’s, muscle weakness and atrophy particularly over the shoulders and neck, bladder dysfunction (instability of the detrusor muscles) similar to MS and incomplete voiding of the bladder, weakness of the bladder and recurrent UTI’s leading to ISC (intermittent self-catheterisation), swallowing and speech, laryngospasm (dry drowning). Salivation and drooling increase with the use of NIV.

Since my diagnosis I have been the first case to present worldwide with a bladder dysfunction (confirmed at UCLH Uro-Neurology) at the age of 44. https://jnnp.bmj.com/content/85/10/e4.84 To the knowledge of my Respiratory and Palliative Consultants I was the first male to have Type II Respiratory failure almost after my diagnosis and now rely on NIV both daytime and overnight and combine this with the use of Mount Piece Ventilation (MPV). I banked my voice early in the diagnosis and now use my banked voice when I am tired or speech becomes slurred. An unusual feature of Kennedy’s Disease is the involuntary ‘dry drowning’ (Laryngospasm) and can only be controlled by medication. The airway closes and causes a sensation of drowning. This can be accompanied by choking or as a result of poor/reduced swallow. I started to notice word finding difficult, memory and cognition deterioration and this was confirmed by psychologists at UCLH that I had mild-cognitive impairment. This was reviewed yearly and showed further changes and deterioration. 

Prior to the pandemic in March 2020 I attended weekly Oxygen Therapy sessions at a local MS Centre in Canterbury. Because my symptoms overlap MS the MS Centre agreed that I would be treated as an MS Member. One of my Grand Parents (Grand Father) was diagnosed with MS the other had Kennedy’s Disease including his brother. I had weekly sessions of Oxygen Therapy which improved my bladder symptoms, improved sleep, fatigue and respiratory function. I suffered less muscle cramps (feet and lower limbs). The first two days after each session improved my quality of life and I had more energy to do activities that I would normally have struggled to complete without taking regular breaks. My cognition improved and concentration. I am a student of the Open College of Arts studying for a BA Photography Degree and found studying better and for longer periods after each session of Oxygen Therapy.

Sadly, the COVID19 Pandemic affected all aspects of life and included my regular Oxygen Therapy sessions. Within weeks I started to feel tired, fatigued and my reliance on Respiratory equipment. I suffered with a chest infection that lasted for two months and several courses of antibiotics. All the planned medical interventions were cancelled (Botox bladder and Sialorrhea). The impact of this has caused further deterioration in my symptoms. The pandemic led to increased Social Isolation, anxiety about contracting COVID19, lack of PPE and care staff created a sense of frustration and depression and increase in blood pressure. Life has not moved on despite the removal of COVID19 restrictions for many. However, due to being extremely clinically vulnerable (CEV) I still take all the precautions and the vaccinations but restricted to living at home. I am concerned returning to Oxygen Therapy and found that Gentle Release Therapy has been life changing!

Each session I felt immediately calm and very relaxed with muscles feeling heavy. I ISC’d prior to each session but almost straight after the session I needed to void my bladder and within 24 hours my symptoms improved (flow, less amount of urine voided) and better sleep. My chronic muscle pain (shoulder/neck) did not require medication or anti inflammatory drugs. Overall my fatigue was better as a result I was able to read and research photographic topics for assignments. The comparison to Oxygen Therapy and benefits were almost identical with improvements in mental health and stress levels lowered and I looked forward to each session. My dreams became vivid and I recalled them after the sessions, which indicated a better quality of sleep. Although I take medication to help with NIV compliance e.g. Melatonin I generally do not recall dreams but sleep sufficiently to maintain NIV. I started to feel that symptoms deteriorated as the week progressed, which was identical to Oxygen Therapy and the benefits peaked after 3 to 4 days.

Scott has been treated by Advanced Gentle Release Therapy Practitioner Ged Lockyer-Sinden of Tranquillity Therapies in Kent. Ged is based in Norton, between Sittingbourne & Faversham. Ged is available for Virtual and in person treatments.

https://www.tranquillitytherapies.co.uk/

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