Patiently Exercising.

Nearly 6 years ago I was diagnosed with Parkinson’s and found myself with 6 months to wait to see a specialist.  Of course I turned to the internet while I waited for expert guidance and the one clear message that made perfect sense was “Exercise can only help”.  At the time there was a simple routine called Keep Moving promoted by Parkinson’s UK.  I looked at the exercises and thought “Those are puny; pathetic!” until I tried to do them and found I couldn’t.  I hadn’t realised how stiff and rigid I had become.  After 2 weeks of trying I could do them and the fact that there was something that I could do that made a difference; made all the difference, and gave me back a bit of control in a world where I had suddenly become powerless.  I still do some of those exercises in amongst others today.

In a recent, excellent, Parkinson’s Movement webinar on exercise, Dr Karen Raphael, a research scientist who also has a diagnosis of Parkinson’s, talked about her own experience, finding vigorous exercise first thing every morning really helps her, expressing it as an experiment with N of 1 subjects.  When I met her, in New York, back in 2017 she made the same sort of point saying she could say what worked for her.  I knew instinctively her approach wouldn’t work for me.  In answer to the question what sort of exercise should I do, the answer given is often “Exercise that you will do.”  There is no point in embarking on a carefully designed programme if it’s too difficult, doesn’t fit your life patterns or you simply can’t face it, perhaps it’s better to start with something you are more likely to stick with.  You can build from there.

There is so much that contributes to successful movement flexibility, strength, balance, control, cardio vascular health, long term conditions like arthritis, injury (past and present), weight etc, and that is before you take into consideration the non-physical factors like motivation, competing time demands, access to equipment or space or cost… Researchers are successfully building evidence of the efficacy of exercise in Parkinson’s and other neurological conditions but with so many mechanisms in play it is possibly even more difficult to research than other interventions.  Designing a testable research question must be very hard.  The good news is that while we patient patients have to wait for new drugs, delivery methods, surgical treatments etc to be properly verified by research we can relatively easily, safely and cheaply get exercising and conduct our own N of 1 experiment to see for ourselves if it makes life better.  WARNING – it is possible to do yourself damage with exercise, especially by taking on too much too quickly but with common sense, lots of information available and support from a number of sources (see below) most people will be able to do something even if it’s only some armchair stretches.

The webinar I mentioned inspired me to set down what exercise I do and my reasoning behind what I have chosen, in case some of it strikes a chord with someone else.  Firstly let me set out some themes and concepts which I have come across that make sense to me in thinking about exercise for Parkinson’s, some of which will be relevant to other neurological conditions as well.  I’m not going to try to give you the science behind any of it but to me they exhibit a deal of common sense

“Use it or lose it” is often trotted out as an encouragement to exercise, especially as you get older.  I recently came across the term “Bungalow knees” to describe the difficulty in climbing stairs encountered by those who live on the flat.  It seems particularly important for those whose Parkinsonian brains are telling them to make smaller movements and move more slowly to keep using their muscles making big movements.  The other side of that same coin “You improve at what you practice” is also relevant in both a positive and a negative way.  The more you make an effort to take longer strides while walking, the easier and more natural it becomes.  Beware though if you aren’t aware that you are hunching your shoulders and don’t do anything about it, you are practising the “turtle neck” and that undesirable, not to mention painful feature, becomes normal.

I came across the idea of doing things “with intent” at the Parkinson Voice Project in Dallas, Texas. The idea is that one can, by being deliberate, bypass the usual communications in the brain that govern semi-automatic movements like walking, talking, writing, swallowing, etc, the types of movement which are most affected by Parkinson’s, and use a different circuit in the brain to regain control.  This chimed with me as I had already adopted for myself a way of thinking to help myself come to terms with the diagnosis considering that my brain, the biological organ, was telling my body to do one thing, but with attention, my mind was able to counteract it, so if I concentrated, I could walk properly and not slouch. It is hard work though.

The concept of neuroplasticity was already familiar to me from my previous work with older learners.  I was already signed up to the idea that whilst brain cells die, the networks and pathways in the brain can continue to develop and do so more readily if challenged with new learning of any type.  I knew that activities that used different parts of the brain at the same time were good at building brain connections e.g. to dance you have to move your body, pay attention to the music and remember the sequences all at the same time and when you’ve mastered all of that for the Tango you progress on to expressing emotion and passion.  There’s a lot of brain work going on at a simple tea dance.

There is also the concept of “forced” exercise that has been aired.  The Davis Phinney foundation in USA promote this as they found that people with Parkinson’s who cycle at the back of a tandem and are pushed to exercise more rapidly than they would choose to do for themselves, experience an improvement of symptoms afterwards. 

Summarising what I have decided I am looking for in exercise, it runs something like this.  It has to:-

  • improve my flexibility
  • strengthen my muscles
  • increase my range of movement
  • maintain my balance
  • provide a moderate cardio workout
  • be complex enough to aid neuroplasticity
  • work on all the muscle groups
  • allow me to practice “intent”
  • provide enough but not too much challenge

If I am going to keep it up, on a practical basis I would like also for sessions to be:-

  • within reasonable reach of home
  • reasonably cheap
  • safe
  • frequent and “drop-in”
  • a sociable experience
  • supporting my motivation through encouragement

I think it’s reasonable to say that no single exercise type is going to deliver all of these demands, so here is what I do and why.

Once or twice a week I go to the local Leisure Centre to a general exercise class designed for people with health problems of different types.  It’s a circuit of gym machines (see above) designed to be easier than the norm, interspersed with step exercises, 2 mins on each.  It is supervised by a knowledgeable physical trainer who leads the warm up and cool down to make an hour’s session.  He can provide non-medical advice and luckily, happens to have a great rapport with the people in the group so the session is good fun.  When I have completed this hour I know that I have exercised all of my body, raised my heart rate a little, talked to a few people and smiled a lot.

Twice a week, at home, my partner and I do a set of exercises together.  They were devised by the European Parkinson’s Therapy Centre in Italy.  We attended their week long intensive programme last March and doing these exercises together has been a legacy of the visit.  The exercises are devised with Parkinson’s in mind but are helpful for my partner to do too.  Big, deliberate movements, some of which are complex, build a 15 minute routine that provides dynamic stretching, opens up the body and raises the heart rate a bit.  I follow this with a set of stretching and strength exercise and a short relaxation meditation.

Once a week I attend an hour’s Tai Chi class in the church hall just a couple of hundred yards from home.  We are learning the Yang Style long form a long sequence that takes 30 minutes or more.  I am really lucky to have this so close to home.  Tai Chi exercise builds strength and control, challenges balance and memory.  Movements are coordinated with shift of weight.  Unlike many types of exercise the movements are not symmetrical which must build new connections in the brain.  An element of meditation is also included, especially as you gain mastery of the physical sequence.  Once a month we all go to the local pub after class and the social connection is an important element too.

People with Parkinson’s are encouraged to walk, taking long strides, lifting the knee and placing the foot down heel first and swinging their arms.  I found that when walking generally there are many distractions that disrupt the rhythm of walking, uneven surfaces, hills and slopes, people coming towards me or even sometimes people behind me.  Now, with the help of the supervisor at the general exercise class, I have gained the confidence to use a treadmill.  I try to put in 15 minutes before the class.  I start slowly focusing on walking correctly and then push up the speed a bit so that the treadmill makes me walk faster than I would by myself.  I find on the treadmill that there is nothing to distract me from quality walking, this is also my attempt to get some forced exercise.  I (and my partner) have noticed an improvement in my walking generally.

4 or 5 times a week, sometimes linked to other sessions I do stretching and strength exercises at home for 10-20 mins, sometimes this is attached to other exercise.  The exercises that I include have built up over time as I have had various problems like back pain, hip pain, asymmetric stance, and are drawn from different sources including the neuro-physiotherapy service.  Most of them are floor based. 

Alongside the above exercises, mostly the home based ones, I try to build in exercising the facial muscles, smiling and winking a lot; the tongue, sticking it out and making circles; pelvic floor exercises and exercise for the eye muscles, changing focus from far to near and in different directions.  However, I don’t do as much as I feel I should on the voice.  I am working on improving/maintaining my balance, especially with closed eyes.  I also try to aid neuroplasticity by adding some brain challenge to exercises.  For example when I have repetitions to count I count forwards, backwards, in groups of 3,4, 5, etc, I count in different languages and may break up 20 reps into 4 lots of 5 each in a different language.  As the languages become more familiar you can add challenge by learning to count in a new one.  If I am doing a repetitive exercise that is time based I might devise a pattern of left repetitions and right repetitions to follow or try to make lists of nouns in my head.

This might read like a lot but it’s actually taken me longer to write about it than to do.  What actual difference it makes I can’t say but I can say, when I have completed any session I feel better, if I can’t for some reason keep up the exercises, I feel worse, I do improve at the exercises I do and on the whole it makes me feel better that I am doing what I can to keep myself functioning.  Nearly 6 years post diagnosis and 6 years of symptoms before that and I’m still moving pretty well, though that might be just good luck.   There are some potential new exercise opportunities developing for me so I will blog about them and their effect later.

Returning to the “Use it or lose it!” theme.  I deliberately didn’t move to a bungalow when we moved 3 years ago, so that I keep using the stairs.  I try to put my socks on standing up and everyday I get down on the floor in a lying position and get up again without holding on to anything.  Those last two are a challenge some days.  However, try as I might, I struggle often with opening cans and using the corkscrew, thank heavens for screw tops on wine and helpful partners!

Information sources and contacts

The webinar on exercise was produced by Parkinson’s Movement and supported by Cure Parkinson’s Trust and the Journal of PD.

https://www.parkinsonsmovement.com

https://www.cureparkinsons.org.uk/

https://www.journalofparkinsonsdisease.com/

The Parkinson Voice Centre      https://www.parkinsonvoiceproject.org/

The European Parkinson’s Therapy Centre      https://www.terapiaparkinson.it/en/

The Davis Phinney foundation       https://www.davisphinneyfoundation.org/

Parkinson’s UK info on exercise      https://www.parkinsons.org.uk/information-and-support/exercise

General support on exercise      https://weareundefeatable.co.uk/ and

https://www.ageuk.org.uk/cymru/our-work/physical-activity/lift—low-impact-functional-training/

and there is much more if you look.

If it wasn’t for the expectation…

Back when I was a child chocolate was an education, learning all those long words, as well as a treat, and I am pleased to say, now that I am an older adult, internet research uncovered evidence that dark chocolate is good for you. I like it when things have more than one positive outcome.

Posts on the Science of Parkinsons blog not only provide useful information but sometimes set me thinking.  A recent post An exercise in expectations – Exenatide III set me thinking so hard it made my head spin.  I needed to sort out my own thoughts and since writing helps to clarify them, in desperation, I have put fingers to keyboard in response.  Not many people read my blog but maybe some will and will have helpful comments to contribute and if not at least I’ll have got my own thoughts in order. The SoP post set outs the argument for avoiding expectation of research and keeping an open mind, I am not disagreeing, but maybe its only part of the story.

Let me introduce some pacification right from the start; I completely agree that the clever researchers into any currently incurable conditions need to keep an open, unbiased approach and just let the science do its work.  Being unbiased is hard enough at the best of times. However, when a researcher has devoted many years of hard thinking and work to a particular path of investigation, to have to contemplate that a result that might be expressed, and I simplify here, as “Listen up colleagues/funders, we’ve been successful in showing this drug doesn’t work” must be hard.  It takes a level of objectivity that seems totally unsympathetic to patients. But acclamation of the work is necessary if the researcher is to follow the path to more funding for the next project, which might be “the one”.  More than that, the negative is a perfectly valid and important research outcome, if one that is hard to hear by those living with whatever desperation inducing ailment is being studied.

In recent years the Parkinson’s world has moved towards a much greater involvement of patients in research design, prioritising research directions and raising the profile of Parkinson’s research.  There is a developing cast of Parkinson’s Advocates that are very visible on social media, talk at world conferences and are known personally to leading researchers.  I think this is a good thing but it must make it even harder for researchers to take a step back and maintain the objective distance required in the face of real lived experience.  I would guess that spending 3 days with a person living with the consequences of Parkinson’s at a conference is a bit different to the usual half hour consultation.

I also agree that the broader Parkinson’s world needs to manage the expectations of the millions living with the condition.  It’s a tricky balance between raising awareness of the need for a cure and better treatments, which is likely to drive greater investment in research funds and overegging the potential and thus disappointing patients, but it’s a balance that is important.

Where the whole thing gets a lot more “difficult” is with patients, particularly those who might volunteer as research subjects

“Honestly, clinical trials for Parkinson’s would be so much easier if we could just take the humans out of them.”, says Dr Simon Stott author of Science of Parkinson’s. 

I am sure he’s right there but, for the time being, we’re stuck with the gold standard randomised, double blind placebo trial on humans as a vital phase of bringing any new or newly purposed drug into use. 

So what are the problems with patients?  Let’s start with expectations?

Using a thesaurus to look for synonyms for expectation includes anticipation, promise and significantly hope.  It is the hope of avoiding an unpleasant end to life which is represented by finding a cure that keeps many living with Parkinson’s going and keeps them, and their family and friends, actively raising money for research and volunteering to be research subjects.  I think there has to be a bit of a bias toward positive expectations to fulfil a need.

Now let’s look at those who volunteer as research participants. 

As a basic principle why would one volunteer to take part in a drug trial if you didn’t have a reasonable expectation that this treatment was going to work.  I have huge admiration and respect for the brave and positive individuals who took part in the GDNF trial, but I suspect that all the counselling and managing of expectations in the world wouldn’t have quelled that kernel of hope deep inside that the treatment was going to work.  Was it that hope that gave them the strength to go through with the trial?  Thinking about the Exenatide phase 3 trial, as I understand it, participants have to inject themselves weekly for 2 years.  Now that’s a tough ask when you consider that the outcome might be that it has no effect.  But when there is a 50% chance that you are injecting a placebo, so even if there was a positive outcome you won’t have benefitted it’s an even tougher ask.  To take part in that sort of trial takes a mind-set that already sets people apart from the norm.

I am not familiar with all of the ways that patients are recruited for trials.  I do know that it’s not always easy to recruit and that some research fails to get off the ground as a result.  Several web based matching projects have been developed in order to encourage participation in Parkinson’s research.  I am linked in to a couple myself and have taken part in 3 trials so far, all observational.  I suspect that those that get involved are more likely to be people like me who are interested in the condition and spend time trying to understand it. Not as bold maybe as those prepared to try drug trials, but still not the norm.

So far a biased sample.

As I often say to people “One wouldn’t choose to have Parkinson’s but at least it’s interesting.”  It’s actually fascinating with all its complexity, different types of symptoms and the different approaches to try to manage different aspects.  I spend quite a bit of time reading and researching and trying to put into practice ideas that seem to make sense to me for my own practice personally and sometimes for the wider community. (See earlier post for example) For myself, adopting the “It can’t do no ‘arm if it don’t do no good” approach, and inspired by the activities undertaken in a particular study I have added saccadic eye movement and eyes closed balance practice to my ever expanding exercise regime.  I am always alert to including different exercises, physical and mental, into the list.  Am I making a difference? It feels like it, I can’t prove it, but it does help me to feel more positive about being in control and that definitely does make a difference, and that’s enough realisation for me.  But here’s a dilemma, if I were to take part in a long treatment trial, would I be potentially spoiling the results by implementing other strategies for making a difference, that I want to try, while the trial was in progress? I’m sure I am not unique in my approach. I wouldn’t want to wait 2 years to try out a new activity, exercise or medication suggested by my clinician.

My conclusions – while patients, with their hard to live with symptoms and their ab”norm”al perseverance, attitudes and strategies are involved in trials, expectations are going to be high, samples are going to be biased and subjects might skew results.  Tricky isn’t it? Difficult for researchers and patients.

Realization of the satisfaction of eating the chocolate, gets lost in the depths of time.

image source pocketbookuk.com