Tag: physiotherapist

Project MS

 

 

 

 

 

 

It’s not really Project MS, it’s ‘project me’.

Project managing the most important project of our lives can get pretty stressful if we allow it to. When you think about it, we all project manage our own health (to a greater or lesser extent) every day of our lives.

If we go out to a party we might try and arrange not to have anything too taxing to do the day afterwards. If we help friends celebrate a little too enthusiastically with either cake or booze or a very late night we might take a few more walks, early nights and fewer parties for the next few weeks.

I’m choosing to be aware of my own behaviours in order to get the best care for myself.

We need to be our own project managers and call on the trades that have historically done us well: physiotherapists, nutritionists and a variety of bodywork technicians.

tool kit on the wall

The impact of disordered blood flow in the MS patient, it has been argued, contributes to the lesions or scars in brain tissue and perhaps an overall shrinking of brain volume over time (although reduced activity can also be at fault here?) Deterioration in mobility for people with multiple sclerosis is, in part affected by having less real estate in the brain for messages to get through to where they need to go.

The head needs a steady flow of blood to transport oxygen and glucose to the brain. In MS patients with slower blood flow it has been hypothesised, brain cells can die sooner than for everyone else. Exercise, with its increase in heart rate and breathing might slow down what is apparently inevitable atrophy in the MS’d brain.

The congenital vascular abnormality theory is not widely held by many doctors. It feels like, from this patient’s perspective, medical professionals seem willing to state there are many potential causes for MS but neurologists seem unwilling to accept that the plumbing (fluids flowing in and out of the brain) cannot be one of those mysterious, as yet unidentified causes.

In the case of MS it seems treating the body (for the patient who owns the body) allopathically – dealing with symptoms rather than getting to the root of the condition (what the experts should be up to?) seems to be our best bet for feeling a little better.

Over the past 20 years I’m not sure I can include neurologists in the list of effective tradespeople for the body?

I think I’ll stick to the alternative, functional practitioners. People working in things that affect me every day:

  • Nutritionist, functional doctor,
  • Physiotherapist, Osteopath, Feldenkrais method practitioner,
  • Shiatsu, Acupuncture and Cranio Sacral Therapist.

So far, I’ve found these professionals to be of most use in keeping my body working as best it can… not forgetting doing an awful lot of reading of my own.

At the moment I’m quite taken with You Are The Placebo it brings a refreshing way of looking at the body we inhabit. It was preceded by Biology of Belief which got me thinking differently about a lot of things. Whist working fairly hard on getting my body to do its best I’ve realised it’s time my mind had some attention, too.

 

Avenues of MS research everywhere!

My own research into increasing variety of movement.

New news, apparently… not the same old news!

Quite often there’s not much to report in MS research or what there is to report is all the same shape – either ineffective or carries the potential of life threatening side effects but… there appear to be a handful of avenues opening up!

A family friend from the US sent me this link last week the way concerned friends do. It’s nice to know that folk care and are thinking about you which can give as much of a lift as anything from a blister pack or bottle.

This article was referenced in the Newsweek article and it prompted me to buy some

  • Tavegil/Clemastine, an OTC (over the counter, no prescription required) antihistamine. It was the only molecule tested (out of a 1000 in their lab) that had any effect on the growing of a myelin like substance on little glass pyramids or something like that (yes, science is strange) but perhaps it will help my body regrow some myelin?
  • I’ve been using phospholipid complex since December (mentioned here) and enjoying a poached egg yolk every day to try and support my brain by giving it building blocks for the last few months.

Interestingly, to an utter non-scientist like myself this page describes part of the reason as to whether there might be a useful effect.

I’ve been signed up to be contacted and perhaps get enrolled in the SMART trial. It will be trialling three existing treatments that were developed for other conditions and, I believe are now out of patent so there is little money to be made from them in their original setting (it could be argued).

  • Ibudilast was one of the three therapies to be tested on secondary progressive MS patients when I showed interest last summer. It has been used in Japan (mostly) for the past 20 years as an asthma therapy. It’s a very good anti-inflammatory, apparently.
  • Riluzole has been used to treat The Ice Bucket Challenge disease or more properly Motor Neurone Disease once also known as ALS or Lou Gehrigs disease, I think?
  • Amiloride which is used to treat heart disease – got no punchlines or interesting facts about that treatment or condition.
  • Fluoxetine (better known as Prozac and usually used to treat depression) is taking the place of Ibudilast.

To a layman, I see the mention of having an effect from the antihistamine on asthma and see that the Japanese asthma treatment has been taken out of the MS trial (being funded by Edinburgh University) and I wonder whether perhaps the drug’s creator might be able to change a molecule or two and get another lease of life out of the out of patent drug by repackaging it as an MS treatment?

Seeing this article about the possible role of a psychedelic drug in the treatment of asthma (well, it worked on mice in the lab) leads me to think the creators of pharmaceutical interventions employ  what seems to be a scattergun approach to the therapies they push on us the patients and it really is worth not holding one’s breath for miracles. I’m an entire human being – my body and brain can’t easily get by without the other!

“What we have demonstrated for the first time is that they are also effective in treating physiological diseases outside of the brain, a completely new and exciting role for this class of drug” says study author Dr. Charles Nichols.

a line of wild animal toys

Whilst keeping an eye on various pharmaceutical offering in the pipeline I think I’ll keep up with my personalised integrative approach. My most recent exercise addition is ‘walking like an animal’ using hands and feet not on hands and knees. I can’t manage the half an hour a day that was recommended to me but after a few goes each day for the last couple of weeks I’m an awful lot better at it than I was!

This physiotherapist in Scotland was reported in New Pathways magazine last year and has now received funding to investigate his results from Edinburgh Napier University. I don’t know how or even whether it is allied to the Edinburgh University conducting the MS SMART trial at the top of this post but I think I’ll continue looking at healing my body from a number of different angles.