Physiotherapy & Alternative Treatments Carol Tried (Magnotherapy / Kinesiology)

Carol has worked with a Physiotherapist throughout her illness but has not really found this beneficial. That sounds quite harsh and I want to try and explain it without sounding too critical of the Physio or the team. Initially a referral to physio was a straightforward thing to do and the early visits were about monitoring limb and body movement and looking at exercises. We bought an exercise bike and cross-trainer just after the diagnosis so that Carol could work on her leg strength. In truth the cross-trainer didn’t last long as Carol’s legs just weren’t strong enough to generate the power needed to move the footplates, and the locking knee was painful. The exercise bike on the other hand lasted well into 2010 and Carol was still able to use it even after she’d moved into the wheelchair. From my viewpoint the physio treatment did initially help to relieve some of Carol’s discomfort and joint pain, and the stretches were helpful.

The problem with physio as a treatment is that as the various areas of the body begin to shut down you start to wonder what it’s actually doing. We think of physio as a way to ease pain or assist with rehabilitation but that’s quite hard to do with a disease like MND. What you find is that physio on arms and legs that no longer have any muscle strength, movement or definition has little benefit apart from circulation and joint stimulation.  Now that might be exactly what these muscles need but Carol began to feel there was less and less impact on her body and minimal effect from the treatment – Carol felt it was becoming more like massage.

As I said above I don’t want this to appear as any kind of criticism of the Physio herself, as she’s done as much as she could over the last 2 years. It’s more an observation of what is realistic in the treatment of MND (in a case like Carol's) and the physical therapy of muscles that have ceased to work – and that’s purely my own personal opinion based on our experience. Carol actually wanted to stop the Physio visits around the middle of 2010 but I insisted that we continue as I felt that any treatment we could get for Carol’s limbs was better than none – that was probably the only time I’ve won that kind of argument.

So what about “alternative" treatments – well there’s no bigger sceptic than me - but it wasn’t about me – it was about what Carol wanted so we had a look around:

Reflexology – Margaret practices a number of alternative therapies and Carol has had a few sessions of reflexology. That’s the stimulation of the body through channels that can be manipulated through the feet. Carol has always enjoyed this and still finds the treatment relaxing.

Massage – Throughout 2010 Carol had a regular full body massage at home. Jacqui would come round and set up her table in the lounge and this was always beneficial for Carol as a way to relax the body and soothe her muscles. Massage didn’t help control symptoms or delay progression but Carol enjoyed it – and that’s the whole point. After the PEG was fitted full body massage became impossible and Carol stopped the treatments. However, we have recently re-introduced massage with Jacqui for Carol’s hands and feet and this is again helping her to relax.

Magnotherapy – Not long after Carol’s diagnosis I met a couple, Phil and Kathy, who have their own business called “Changing Lives”. I’d twisted my ankle playing football (silly I know) and couldn’t seem to shake it off. I went along as a sceptic, but also thinking about Carol, and Phil treated my ankle. Magnotherapy involves using magnets to treat ailments / injuries / illnesses of the body to stimulate blood flow and effective repair of the affected area. What a load of rubbish I can already hear you shouting – well Mr Sceptic was indeed turned! Phil wrapped my ankle in magnets and within 20 minutes I felt better – I don’t have an explanation but can honestly state that it worked for me with that specific injury.

Anyway I talked to Phil and Kathy about Carol’s diagnosis and the changes that had already occurred and Phil was adamant he could help. Carol was quite happy to give it a go and so we started what would become a long standing treatment programme. Over the coming months I would watch Phil treat lots of different people, while Carol was being treated, and there were many expressions of surprise when the magnets came off and people felt different!

Phil has to be one of the most positive people I’ve ever met and his belief system is infectious. You can’t help but feel better when you’ve spent an hour with Phil and Kathy and the treatment certainly does do something. As far as Carol’s condition was concerned I didn’t believe we were heading for a cure, although Phil always maintained he could beat MND, it was just about exploring the treatment and seeing what that could do for Carol. We visited pretty much every weekend we could between September 2009 and September 2010 and Phil always found time to treat Carol, even when they were already busy with customers. I offer our sincere thanks to both Phil and Kathy for all their help and support during that period, it was an unexpected opportunity that helped us both a great deal.

I suppose the question you’re asking is not so much “did it work” but more “what did it do”? You’ve seen from previous posts how Carol’s condition progressed through that period, at an almost unstoppable rate. Carol could still walk when we first started to visit Phil and was a long way from that by the time September 2010 came around. As I said it wasn’t about a cure, it was reaching out for something…..just something.

What I do know for a fact is this – every time Carol had treatment she felt better, it’s really as simple as that. For a period of time following each visit Carol felt stronger – now did that help to slow down the progression at all? Would Carol’s progression over that period have been even more aggressive without that treatment? The truth is we’ll never know – so again it’s about taking the positives and there were many of them for Carol.

Kinesiology - During this period Phil also introduced us to what I can quite honestly say was the most bizarre treatment I’ve ever witnessed - Kinesiology. We met with John who was the practitioner and he explained what the treatment was about – if I say this “Kinesiology - a natural health care system using gentle muscle testing to evaluate many functions of the body in the structural, chemical, neurological, and biochemical realms” then you can see where we’re heading.

Carol had 2 separate treatments – in November 2009 and August 2010 – and they were the strangest treatment sessions I’ve ever seen. I could go into great detail but there’s simply too much to cover and there is no way I could explain it - so in short:

·         The first visit involved getting Carol “balanced”, using mineral placement on the body – charcoal in Carol’s case - and she was placed into an almost trance like state (almost like hypnosis). John used the involuntary movement of Carol’s arm to answer yes / no to questions he was asking about what Carol was feeling (up was yes / down was no). As I said, difficult to explain, and we ended up with Carol identifying feelings of abandonment by her Mother. Remember none of this was spoken by Carol, everything was done with yes / no answers from the movement of Carol’s arm. Whether these feelings were a subconscious memory of Margaret and the adoption, or real time thoughts on Annie’s faltering health, I just don’t know . There was even the sight of Carol’s body arguing with itself in response to a question about telling Annie that Carol had found Margaret – Carol’s head was shaking “no” but her arm was raised and immoveable as a “yes” – believe me when I say that I have absolutely no way to explain what I witnessed that day.

·       But that was nothing compared to the second session. Carol’s health had deteriorated by August and we’d also lost Annie but just try and explain this! John started as before with “balancing” Carol and the arm yes / no system. This time the questioning led Carol back 35,000 years (yes that’s 35,000 years!) to a memory of a small child left behind in a hut in Africa after being abandoned by her Mother and family. Carol said later that she could see and feel everything around her, and even smell things as if it was actually happening. Now before you ask me to try and explain that I have to say that once again I had absolutely no idea what was going on – I was baffled the first time and completely clueless the second. It was without a doubt the single most bizarre treatment I’ve ever witnessed.

So again we ask what did Carol get out of this treatment? To be honest I struggle to answer that one even today. Carol experienced something very personal during both of those sessions and that is still very difficult to put into words – you should have heard me trying to make sense of it when telling the story to the family!

So that’s just some brief information on a few different treatments Carol tried – mentally I feel they all helped Carol, physically there was only so much that could be done.