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
A welcome new exercise class for people with Parkinson’s has started in Cardiff and the Vale University Health Board. On Friday more than 30 PWP, including me, attended an exercise session run as part of the Neurology Outpatient Physiotherapy Service Early Parkinson’s Programme. They had all taken part in a previous 8 week programme over the past 2 years or so.
The Neuro physios have devised a set of 11 exercises that would be easy to do at home with just some simple equipment. The exercises aim to improve range and scale of movement and flexibility, increase muscle power, improve coordination, challenge balance whilst at the same time challenging the brain by introducing complex movements and encouraging use of the voice by adding in vocalisations.
Rather than focusing on lots of fast repetitions, as in a cardio session, the exercises are intended to be done deliberately, with big movements to the extent of capacity (really reaching and stretching) and with 80% effort. They frequently have 2 second pauses “written in” to encourage this approach. This is where the drop-in regular session really comes in to its own. One can do the exercises at home on ones own, but it’s very easy to slip into doing them with less effort, smaller movements and with less intent. Doing each exercise in a small groups participants are able to encourage each other as well as be spurred on by the facilitators, so the weekly sessions should improve the quality of exercise at the sessions and at home. Partners and family members could also help with the home sessions.
Its not a punishing cardio session, so those who hate the thought of a gym needn’t be frightened of this type of exercise though the hour’s session last Friday certainly raised my heart rate. The increase in flexibility and improvement in posture feels good. Thanks Neurophysio team!
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.
During January we visited the tropical island of Maui in Hawaii. With our friends, the Tarowskys, we rented a condo in Kihei that was just a few hundred yards back from the west facing beach. On day 2 we ambled down at the end of the day to watch the sunset. On the beach and in the park alongside it many others had gathered, with folding chairs or mats to sit on, olives and Mai Tai cocktails, champagne, beer or even complete picnic feasts. We were all there to witness the spectacular sight of the sun sinking into the Pacific Ocean. As we watched, there was a tangible sense of a community, a shared experience, and apparently, as it finally disappears, sometimes the sun even gets a round of applause. That might seem an odd way to acknowledge a completely everyday thing but we all benefit from recognising and valuing the remarkable, it helps to keep life in perspective and I suspect that ancient memories stir the sun worshippers deep inside us all.
Later in January we were staying in a beautiful Air B’n’B in Bonito Springs, Florida, this time a few miles from the beach, too far for an evening stroll. However, on our last night there, our delightfully friendly, helpful and welcoming hostess, Jo, insisted on driving us to see “One of the best sunsets in the world”. She dropped us off, thrust a paper bag into our hands and said she’s be back in 40 minutes. Inside the bag was some fresh crusty bread and 2 spill proof cups of red wine and we were able to join a different audience, including some Pelicans fishing for their supper, and toast the same sun as it disappeared, this time into the Gulf of Mexico. Jo was right, it was a great sunset. As we sat there in our t-shirts we were amused to see some people, presumably locals, wrapped up warm in hoodies and blankets against the chill evening air at 65F (18C).
On our return we found logs burning in the firepit, Jo’s husband Tony cooking Bratwurst and the table all set for us to join them and son Luke for an evening. They really were the best sort of Air B’n’B hosts! Throughout our stay they were keen to tell us about all the good and interesting things about their home town and the area. They obviously loved their home and were keen to share its everyday yet special features. Sometimes it takes a visitor or a stranger to make one value home.
A few days after getting home we made a short drive, one we often make, to the pebble beach at Cold Knap, Barry. Usually we go there for a walk but this time we went a little later and watched that reliable old sun sink over the Bristol Channel. The spectacle isn’t as certain as it is in Hawaii and Florida, but choose your day and it can be, and if its cold you can sit in the car with the heater on and watch!
There are not many photos of me on the Florida part of our trip. That’s because I broke rule no 1 and thankfully that’s all I broke. Rule no 1 is DON’T FALL.
I didn’t so much fall as make a brief and unsuccessful attempt to fly, crashing to earth via knee, wrist, shoulder and finally the side of my face! It was a tourism based fall, we had been trying to find our way from the beach to the road without trespassing on expensive waterside properties. I spotted the route, turned to tell Phil and set off, not noticing the inconspicuously bright yellow kerb at my feet!
As I lay in the car park absorbing the Florida sun I tentatively checked my teeth, gently wiggled different parts of me and was relieved that everything still seemed to work. Next I checked my recall of pin numbers, addresses, names etc and again all seemed well. I escaped with grazing and bruising and a “shiner” that any boxer would have been proud of. A kind lady came over to see if she could help and supplied antiseptic wipes and Nurse Jo, our Air B’n’B host applied some first aid antibiotic. This is why there was an absence of photos. There was a slightly anxious 24 hours or so while we awaited possible head injury symptoms and then I was on the mend.
I bounced and I was so lucky. Any injury can really set you back, not able to exercise, loss of confidence etc etc. I also reflected that it wasn’t a Parkinson’s type of fall, not a balance or gait type of fall so I am not frightened of doing it again. I will however, try to respect large yellow lumps of concrete, and obey rule no 1.
Escaping the dreary British winter by fleeing to sunnier climes for a while was intended to help with my Parkinson’s symptoms, that always seem worse in the winter. It’s been a balance between chasing the sun and trying to mitigate the worst bits of travelling and I have written about the travel strategy in another post. I have also written about the challenge of snorkeling. So what else have I learned?
The Sun – We all love it and as long as we are cautious of its potentially harmful rays a good dose of sunshine must do everyone good. I asked for a Vitamin D level check and being on the low side have been taking a low dose supplement for some time. But sitting in the sun for a short while just makes me feel so much better. I feel like a rechargeable battery just absorbing energy or maybe more like a lizard raising my body temperature. Is the science behind it light or other solar radiation, vitamin D, body temperature, straightforward relaxation, who knows? There is certainly something in it and I’m happy to volunteer for any research project that involves sitting in a beautiful spot like the garden of our Air B’n’B above.
Fatigue – I do sometimes experience real fatigue and find walking longish distances or up even gentle inclines hard at times. I use the well worn phrase “like wading through treacle” because it describes so well how it feels. I can put one foot in front of the other to walk, but I so don’t want to. While we’ve been away I have walked far more than I normally do and even managed the ridiculously steep hills of San Francisco. I thought we were used to hills in Wales but maybe it’s the American passion for laying out cities on grids that means streets take the shortest route to the top, making them extremely steep. However, I think it must be the motivation to reach whatever lies at the top of the hill that makes the difference. A view from the Coit Tower across the whole of San Francisco Bay has to be more motivating than walking to do some food shopping. Note to self (and partner) – Motivation is so important in PD we need to find artificial ways of introducing it into life.
Routine – I find that following a fairly regular routine helps in managing PD. It’s a route to successful management that has its dangers. I can so easily get fearful of disturbing that routine that I self limit what I can do, a potentially downward spiral. A big event like a holiday helps to identify those bits of the routine that are important and those less so. Its also a good reminder of what you can still do to counterbalance those that you can’t.
Take home messages – sadly we all have to go home and for us that is tomorrow 😦
Go on holiday – its good for you.
Take a bit of time over arrangements – you can get extra help at airports
Find what motivates you to do more
I am fortunate I know, I have my wonderful partner Phil to help and support me. We’ve had a fantastic time together. Do you fancy Africa next winter?
Along with several other fellow Parkies I find my symptoms are far worse in the cold, grey, often wet Welsh winter, with its short dark days. So my partner Phil (above) and I decided to try to escape to warmer, sunnier climes for most of January. To cut a long story short we headed for Hawaii on the Tropic of Cancer, nearly half way round the world; a good plan.
Now to deal with the next set of PD related limitations. Long journeys sat in the same cramped place for too many hours don’t do much to aid the movement symptoms and tend to reduce my level of flexibility to that of the trunk of a Giant Redwood The answer chop up the journeys into more manageable chunks. Crossing big chunks of ocean like the Atlantic and the Pacific don’t leave many stop off points along the way and we are certainly not rich enough to travel by sea so two 5/6 hour legs in each direction were unavoidable. Spacing out those longish hops added to the strategy of helping avoid discomfort.
The journey became:-
fly to New York
train to West Virginia to visit friends
fly to Seatac airport (one of the depature points to Hawaii)
stay over 2 nights to recover – visiting Seatle on the light railway
fly to Hawaii ( and enjoy the warmth and sunshine for a while)
fly to San Francisco for a 5 saty stop over (which is where the cable cars come in)
fly to Florida (where we hope for 10 days of warmth and sunshine)
Along the way we’ve been on a variety of boats to take us from one place to another within our destinations.
So far the travelling part has gone well and allowed me to enjoy the holidaying part and not be dreading the next leg. The strategy has worked but it has its costs financially, we won’t be able to do this every winter 😦 .
We need a new approach for next year. Any ideas??? Answers on a postcard from somewhere sunny, and by the way robbing a bank isn’t in my skill set.
The main driver of our visiting San Francisco for the second time was to visit the giant redwoods. Somehow on our previous trip in the summer of 2017 we didn’t manage it. There was people to see, arrangements to make, work to be done and SF was jam packed with summer tourists, it was all a bit too pressured. I had been keen to see these giants, but truth to tell we didn’t realise that the redwoods were as easy to get to as they are and I was disappointed. So needing to fly back to the mainland of USA from Hawaii and wanting a few days stop over a second chance for me to see the trees became a reality.
I wasn’t disappointed this time. Despite the rain of a San Francisco winter it was a genuinely awesome experience. Muir Woods is a National Monument and a protected area of some 600 acres (I think that’s right) and getting in among these ancient trees has been made easy. One might think that the paved paths and boardwalks would spoil the sense of nature but they can’t impinge on the majesty of this small forest some of whose inhabitants as 8 or 9 hundred years old.
As we walked I was trying to capture what I was feeling and was using words like serenity, beauty and peacefulness, but I also felt a watchfulness, an expectancy and a sense of community as though this place was one entity biding its time while mankind comes and goes. I count myself lucky to be there when the weather was poor; very few others were. We were able to stroll alone for long periods hearing nothing but the dripping rain and the active silence of the forest. It was magical.
One of my Parkinson’s symptoms is a problem with swimming. I have always considered myself a strong swimmer, as a student, being a lifeguard at the local Lido was my regular summer employment. When I turned, post diagnosis, to the local indoor pool for some exercise I was distressed to find that “something had gone wrong with my swimming”. Gone was that easy confidence in moving through the water and I had to concentrate on what I was doing even to keep afloat and I spent more time swimming on my back. The experience really made me feel sad and reinforced the “losses” that PD brings with it.
When we were planning this holiday, including time in the paradise islands of Hawaii, I was adamant that I wanted to do some snorkeling. My partner was worried, I guess he thought I might get into difficulties and maybe he’d have to help me out. I felt that I wouldn’t be in danger as long as I didn’t panic I could always turn on my back, the salty Pacific Ocean would be nice and buoyant and it would be too good an experience not to try. I won!
On an organised trip we went to the island of Laina where we were able to snorkle off this lovely beach in a marine reserve area. I confess that I had a moment or two of slight concern as they went through the safety briefing, especially the bit about “getting through the danger zone” of the breaking waves with their undertow. However overseen by the very helpful, friendly and competent Trilogy lifeguards I made it to the safer zone and was able to watch the many different types of coloured fish swimming around the coral reef, just like being inside an aquarium. A great experience! Thank you Skipper Kate and her crew.
Even more important was the reminder that even though PD steals some things from you there is still many more things that you can still do. You may need to think it through, make an extra effort and get a bit of help, but don’t give up on something you really want.
I’m only half way through the holiday, I hope there are some other challenges to come.