Thanks to a sensitive Tweeter I have an issue I would like to raise for consideration in the period of the Corona Virus pandemic 2020 +
Facemasks and communication with particular consideration for the Parkinson’s community. It seems likely that facemask wearing will be commonplace for some months to come in a population who are unused to them.
Many of those who have known and recognised hearing loss use lip reading as the main way of understanding spoken speech. Many more, in number terms, in the wider population, particularly in the older population subconsciously or unknowingly use lip reading to support a less profound hearing loss. The widespread use of facemasks in many different settings will therefore make it far more difficult for a significant number of people to understand the spoken word. Techniques such as sub titles can help when communication is via video of some sort but for face to face communication face masks raise difficulties.
Facemasks also hinder communication in the other direction the speaker with a quiet voice is less likely to be heard and the facial expressions that support communication are less visible.
Parkinson’s specific issues
As well as the difficulties above those who have Parkinson’s may have additional problems.
Some people with Parkinson’s experience problems with speaking, they may:-
Have a very quiet voice
Have a croaky hoarse voice
Have very flat intonation
Be slow to initiate speech
Have difficulty in finding words when under pressure
It is likely that using a facemask will make it far more difficult for these PWP to communicate what they mean.
Guidance on best practice for those who need to talk whilst wearing face masks may aid communications e.g.
If there exists a clear and sufficiently tight woven fabric that one can also breathe through that would probably be very helpful. I don’t know of one.
It might be possible to devise some simple signing that at least alerts staff who may be trying to understand a person with Parkinson’s to the potential problems.
Allowing time in the communication for repetitions and for PWP to gather their thoughts should be helpful
I would like to stimulate a discussion amongst those who may be able to provoke action on this matter. If you can help or have ideas please contact me.
In the 4th week of the UK version of Social Distancing as a result from the threat from Sars-CoV-2 my days actually seem quite full and sometimes could even be called productive and I could say a lot about what I have been up to. What I am actually going to discuss is what I haven’t been doing … IRONING.
I have avoided ironing for many years and a diagnosis of Parkinson’s gave me justification for doing even less. For some reason I don’t quite understand Parkinson’s results in tortuous dealings with anything made of cloth, even folding tea towels sometimes becomes tricky and the description of getting dressed is definitely something for the post 9pm watershed. I have always tried to hang clothes after washing, so that they need the least amount of ironing and certainly get away with just folding, rather badly, many of my items in more normal times. Now we are in a version of lock-down, the doorbell isn’t going to be rung by an unexpected guest and I am not going to be embarrassed by the fact that I am wearing a crumpled, un-ironed shirt. My partner is the only one I see and he’s not likely to be bothered so I pretty much gave up on it.
However, there is more to it than that as ironing takes on a new significance in these strange times. There are some things that I own that have to be ironed or they look very wrinkled, so generally even I iron those, usually just before wearing them, if my partner hasn’t already done it for me (kind man!). In “Isolation” of course the wrinkles don’t really matter, no one’s going to see, I don’t need to iron them, but I do! Why? Because they feel nicer to wear when they are carefully ironed. So now ironing changes from being a difficult chore to please others, to a challenging activity that gives me the reward of enjoying wearing the item of clothing.
I’ve heard Mindfulness practice described as “Noticing new things in the familiar.”, and for me a positive approach to this most un-favourite of tasks is definitely new. One of the things I like about Mindfulness is that it’s about awareness and very much depends on how you look at something. Take for example the morning shower, one can Mindfully enjoy the physical pleasure of an extra half a minute of warm water massage or limit your shower length and feel good that you have saved 30 seconds worth of carbon footprint. Each approach is as mindful as the other more or less!
Over the years I’ve found being Mindful helps manage life with Parkinson’s, no doubt, for months, years or possibly for the rest of my days I’ll be looking at a new sort of life with Sars-CoV 2 which will probably require the same sort of flexibility. As least I’ve had a practice run.
PS – Please don’t tell my partner, Phil, he might stop ironing
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
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.
Suddenly everyone seems to be interested in tiredness. It’s probably explained by some sort of fancy theory like confirmation bias but I prefer to put it down to serendipity, not least because that’s a word you don’t get to use often. In my preparation for my next clinic appointment, (previous post) I highlighted the tiredness/fatigue/exhaustion/wading through treacle, type of symptoms I encounter as the element of Parkinson’s that has the greatest impact on my quality of life. Since then relevant articles, papers, tweets etc seem to pop in to my inbox.
Larry Gifford opened his recent When life gives you Parkinson’s podcast with a description of how at 2pm every day he “hits a wall” and despite numerous cups of coffee and other attempts to keep going, just has to have a sleep. His words certainly chimed with me. I have a friends who says she just has to keep physically active if she wants to go anywhere in the afternoon. If she sits down in a comfy chair, she is likely to fall asleep and miss her event.
For some reason I came across a World Parkinson’s Congress blog on The puzzling features of fatigue which underlined how common a feature of Parkinson’s fatigue and tiredness are and how many people (30% in one study) rate it, like me, as the most life affecting symptom. It seems that the symptom is complex, poorly understood and counter-intuitive in its presentation e.g. its not correlated with increasing motor problems as one might expect. There are no real success stories as far as pharmaceutical treatments are concerned.
I was alerted by Twitter to a paper on new research (Kotagal et al) published in the Journal of Parkinson’s Disease that has found an association between diastolic blood pressure (that’s the lower measure) and fatigue in people with Parkinson’s. It may not tell us very much at this stage but as least it may open a door to understanding and it’s good to know someone is looking at this tricky symptom that has such an effect on life.
I wonder if my clinical team will have any helpful suggestions when I see them week after next. We’ll see – now – off for a sleep ZZZZZZZZZZZZZZZZZ!