Treatment thoughts on long-term physiotherapy for people with Huntington’s disease
In memoriam to Sheila Boad 1953-2019 Rock goddess and lover of the outdoors. By kind permission of her daughter Charlie Patteson.
My job has given me great joy and there are many positives to the day-to-day work that I do. A real positive is that sometimes I get to know people over a long period of time, sometimes working with them for many years.
The people I meet are a great source of inspiration and Sheila was one of the greatest inspirations I have ever met. She had a lust for life, was always positive and looked for the best in people.
Today I’m going to cover some of the treatment processes I used with Sheila. She had Huntington’s disease, and was living in a nursing home which was very supportive and had excellent facilities.
Sheila was referred to me following a spell in hospital after a fall which had resulted in a fractured her arm. She had spent a period of time not walking and had “gone off her feet’.
She had not responded well to standardised physiotherapy and had to been told (rather rashly in my opinion ) that she would not be able to walk again. Sheila could not follow direct instructions or sheets of exercises and hadn’t progressed well.
Sheila did respond really well to just getting on and doing, and so we set about working on standing and standing balance.
Using a weighted wheelchair in front of her, we were able to improve her balance, we progressed to walking using the wheelchair in front, then with two people, then one person and eventually, for a while, Sheila was able to walk with close standby assistance only. This took a few, weekly, visits.
Once walking was possible with her carers treatment continued and was varied week to week.
Treatment included:
- fun activities such as balloon tennis or football in the corridors.
- coordination activities such as throwing and catching beanbags.
- range of motion activities such yoga on the floor.
- mobility activities such as varied walks indoors, dancing, turning and walking forwards, backwards and sideways.
- strengthening activities such as sit to stand practice
- relaxation activities and sessions (where-ever possible) included a walk outside in the garden to sit and feel the Sun on our faces, and listen to the birds singing. Sheila found this profoundly relaxing, plus it gave her a strong sense of achievement and freedom.
When Sheila had episodes of deterioration in which standing and walking became extremely difficult for her and her carers, we worked together to find ways of getting Sheila to stand. These included keywords such as “let’s go” and “follow me” to stimulate automatic movement. When her walking really deteriorated she was able to walk being led by somebody holding both her hands and them walking backwards as she followed them. This was controversial, but at the correct speed and training, carers felt sufficiently safe to use this method in most areas of the home.
Turning and sitting was particularly difficult for Sheila to coordinate and this was addressed with clear positive instructions such as ‘keep following’ “keep turning” “look at me” “keep moving” and the word “sit” was only used when sitting was safe. Carers were instructed not to mention what we didn’t want to happen such as “don’t sit down”, as Sheila’s brain would invariably hear “sit down” and often act automatically upon it, even when she was nowhere near the chair.
This technique gave Sheila an extra six months walking. Her carers saw positive results and became confident in its use.
It was noted by family and carers that when Sheila was given the chance to be active her ability to swallow and speak improved markedly. Where-ever possible we were very keen to keep her mobile as much as possible. This was much less risky to Sheila than being prevented from standing as a “risk avoidance” strategy.
It was partly my role to ensure that all staff members felt safe when working with Sheila, as well as helping them to understand just how fundamental to her well-being it was for Sheila to be able to regularly stand and walk. We built a trusting rapport and they freely came to discuss any concerns with me so that we could trouble shoot them together. Sheila remained able to stand and walk until a few weeks before she sadly passed away due to digestive and lung complications.
Many thanks to the staff at The Beeches Care home for their positivity and openness to some unusual solutions to maintaining Sheila’s mobility.
My top tips for treating people with Huntington’s are:
- keep it fun, varied and functional with many visual cues.
- Check which verbal cues work best and pass them on to others
- use games to promote balance and self-confidence, such as balloon tennis and football
- educate those around them as to the real levels of risk in not allowing movement verses levels of risk in falls et cetera.
- use going outside and listening to peripheral sound such as birdsong, looking at horizons, as a means to promote well-being and relaxation
How Huntington’s affects a person varies greatly and so this is not meant to be a prescriptive piece. It is more a sharing of ideas, what I have found has worked with the small number of patients I have treated with this disease.
There are many positive things which physiotherapy can do for people with Huntington’s Disease, so long as we keep an open mind, think laterally, follow the needs of the individual and keep it fun and active.
For more information about the treatment services I offer please see https://www.neuro-physiotherapist.co.uk/conditions-treatments/
