On a whim, looking for something to read while travelling I bought WheretheCrawdadsSing at Gatwick airport. I chose it because I liked the title and because it was set in USA, where I was heading. It turned out a good choice as I’ve enjoyed it.
On the “Pennsylvanian” train from New York to Pittsburgh, as far as Philadelphia we were squashed in a 2 facing 2 seat with some folks from North Carolina and inevitably chatted to them. They were interested in my book choice as it was set near their home and as we talked they recommended author Nicholas Sparks who also writes about North Carolina. I promptly forgot his name.
The next time I was looking for a book in an airport book shopEvery Breath reminded me of their recommendation and now I’m working on that. I hope our briefly encountered friends accepted my recommendation too.
Every Breath turned out to have particular resonance as issues of dealing with a neurodegenerative condition in the family are raised. What will stimulate my next bit of holiday reading I wonder; where will my actual journey take my literary one?
Yesterday we flew from Seattle, Washington State to Maui in Hawaii. Seattle is in the north-west corner of the main part of USA, latitude 47 degrees North and you probably know that Hawaii is some 20 degrees North pretty much on the Tropic of Cancer. As we waited at the departure gate it was a grey, cold, rainy day with a chilly wind. Around us were people dressed in waterproof jackets and scarves while others were in Aloha shirts, shorts and sandals. As we caught the transfer bus out to the plane and dashed through the rain to the aircraft ramp I felt sorry for those with wet toes! 6 hours or so later we arrived in Maui to a temp of 85F and high humidity and those warmly dressed began to suffer.
I began to ponder about the nature of the different approaches to dressing for such a journey, and wondered whether there was some significant character trait that separated departure and arrival dressers. Were some optimists and others pessimists, or were some looking forward and others content with the present. I started really thinking about finding a significant analysis! Of course to really give this proper consideration I would need to observe the same people on the return journey, separate visitors from those returning home and adjust for other variables, so … I stopped pondering.
One lesson I could draw though, was that whatever one does there are some positive outcomes and some negative ones, and you just have to live with it. There is seldom one completely “right” way forward; so I’ll make my decisions, live with the consequences and not regret my choice.
I have mentioned in a previous post why I am spending 12 months finding 70 different friends to share a glass of bubbly with me. Tom, Judi, Gayle and Joe (pictured left to right) surrounding me on the stairs, in Joe and Gayle’s home in Pittsburgh, Pennsylvania, may turn out to be the furthest flung but at nos 6-9 its early days! The story or should I say history of our friendship is a long one.
Back in the 1960s, a school scheme matched me up with Judi as a “Pen pal”. In those long pre-internet days the idea was to link people across the world through the exchange of letters, a mode of communication which is now sadly rapidly disappearing. Judi and I had similar interests in folk music, among other things, and we were soon exchanging audio tapes (reel to reel of course) of songs as well as letters. Here’s what Judi sounded like back then.
As a present for graduating from high school Judi’s parents gave her a trip to the UK to visit me, and for 3 weeks we had a high old time visiting tourists sites and Judi even bought a mini skirt in Carnaby St. This was the height of slightly outrageous fashion at a time when, as Judi put it in a newspaper article she wrote for her local paper “London swings like a pendulum clock”. I never got the full story of how it was received back home in West Virginia but it was a bold purchase.
Over the years the letters flowed and ebbed as life got busy and then we lost touch but the internet rescued the friendship as Judi found, on a website, a photo of me at a small folk festival and made contact once again.
In 2002, Welsh folk group Calennig were invited to bring their show Tale of Two Rivers to Harrisburg, I was the storyteller in the show. In US terms Judi and Tom were only a stone’s throw away in St Clairesville Ohio, we linked up again, Judi and Tom discovered storytelling and became accepted members of their local Welsh community and the links deepened. There have been several trips in both directions since then with Judi and Tom coming to Wales to the Beyond the Border International Storytelling Festival twice bringing son Joe and his wife Gayle with them too. All four of them were able to help me with local knowledge and guidance when I did my Travel Fellowship in 2017. Tonight Tom, Judi, my partner Phil and I will see in the New Year in Weirton, West Virginia and set off for Hawaii a few days later, now that what I call bubbly buddies!
I already have volunteers for places on my list of 70 – but – get in touch maybe we can meet up.
I tried Tai Chi and Qigong as exercises a number of times over the years, both before and after my diagnosis of Parkinson’s and whilst all that I read told me it would be beneficial, my heart was never quite committed, I never seemed to really get engaged with it and always ended up missing a few classes and then giving up.
This time round with my current class it’s been different. Granted in some ways it’s easy just 300m from home and at a convenient time, just before supper, but as ever the whole story is more complicated.
In February, we, the beginners class, will have been learning the 108 Yang style long form of Tai Chi for 3 years, and we are nearly there though I don’t think any one of us would be 100% confident to complete the whole thing without Annie Bennett, our teacher, to lead us. Annie is on the left hand end of the picture, she was taught by Gerda Geddes, who is credited as the person who brought Tai Chi to the UK. Gerda herself learned in China so we feel fortunate that for us, the link back to the form’s Chinese origins is remarkably short. Alongside the physical movements we are given a narrative to add meaning to the progress from one sequence to another that completes a satisfying and meaningful story.
There are many different Tai Chi classes available with different content to consider including classes that have put together short sequences designed to improve health. As a person with Parkinson’s let me say why I feel the long form we are learning is so helpful to me to combat the potential effects of Parkinson’s and why I would encourage anyone to take up one of the traditional “forms”.
Firstly, Tai Chi is gentle and slow so there is no worry about keeping up with younger fitter members of the group. That said, it is challenging physically and certainly builds strong muscles, especially in the core. It’s not a typical aerobic exercise, I don’t get out of breath, however I am aware of breathing well, with control and using all my lung capacity and there is certainly some hard physical work going on, I get warm very quickly.
There is a great deal of focus on where your weight is. When standing you are perfectly balanced on both feet and when moving consciously changing you weight from one foot to the other in a controlled way so that you are never off balance. Tai Chi is of course rooted in Martial Arts and you need stable balance in a fight. As a person with Parkinson’s its useful to have that stability in a shopping mall or other crowded place, especially if, like me, you are always going against the flow.
Parkinson’s has the effect of telling you to move less, less often and with smaller movements. To combat it you have to move more often and to consciously make big movements, using all the muscles you can. Someone clever has worked out the completing the 108 long form uses 95% of all the possible movements a body can make. Do that every day and you are certainly keeping moving
Tai Chi is also a challenge to the brain. Most of the movements are not symmetrical so you are constantly using both hemispheres of the brain and changing from one to the other. Learning the 108 form is a major mental challenge in itself, a mixture of brain and muscle memory. Then once you’ve learned it there is still scope for improvement as you work to make your movements smoother and more graceful.
I am also lucky that joining this particular group has been helpful. In Annie’s class with its friendly participants, it doesn’t matter if I can’t bend low to pick up the Golden Needle, if I’m not quite as elegant as some of the others or if I wobble a bit in the kick section of even if I have to sit out completely sometimes, nobody minds. The class members have become friends, most have lived in the village far longer than me. It’s nice to feel welcome and the social side of the class is important to me.
Once a month there is a table booked for us in the local pub where we can have a drink and/or a meal and a chat after class. In the picture above we are celebrating the start of a campaign for my 70th year. It was my 69th birthday last week and before my 70th I plan to drink a glass of bubbly with 70 different friends, pictured are nos 1 to 5. I knew I could count on them to join me and say:-
NB There are by now several research papers demonstrating that Tai Chi and Qigong has beneficial effects for people with Parkinson’s, here is one as an example, here is what Parkinson’s UK has to say about it, and another article from American site Parkinson’s News Today.
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
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
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.
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!
At times I have felt it (diagnosis of PD) as a threat to identity – I am being told that there is something wrong with my brain and my brain is my identity far more than my body is; I sit inside and look out. Adaptations can be made to compensate for deficiencies in the body but I am scared that at present there is little that can be done to keep control of the brain and maintain the “me”.
I was and am changed by having Parkinson’s. In some ways I feel a mere shadow of the energetic me that was, but I’m still in there and I still do much more than look out.
One of the things I turned to instinctively was to develop a storytelling show, this became Sorting the Sock Drawer and during its early development and since, it really has helped me sort my “self” out. As I found and described the characters in two intertwining stories, I saw reflections of my new self emerging from the old. While the audience learns about the characters and their lives, empathises with them, laughs with them and begins to understand them, I understand more about me. I find too, that on the whole, I am pleased with what I find.
Over six weekly sessions, starting September and October, the programme will be based on three themes:-
Stories, both traditional and personal. Old stories that have been honed over long years, have wisdom and characters that we can easily identify with. Sharing personal stories reminds us we are not alone.
Personal reflection. Seldom do we have the time, space and motivation to take a good look at ourselves and remind ourselves of the good in life.
Creativity. The programme offers tasters in a range of different creative activities. There will be something for everyone.
AND we intend to have fun!
Slow Motion Selfies is open to anyone living with a neurodegenerative condition. Please e-mail firstname.lastname@example.org if you are interested in taking part.
An individuals choice of socks surely tells you a lot about them. Consider the man who has a set of pairs of socks with days of the week on them and wears Thursday, on both feet, on a Thursday! As for me, my sock drawer is still a heap of single socks that sometimes can be matched into pairs, so not very sorted. However, my sense of a positive me has been enhanced by the creative process of telling my story.
One thing I have done is to try to follow my own advice!
One of my recommendations from my Travel Fellowship report on Patient Education is that a tool should be developed to improve communication between clinician and patient. Time is a scarce resource for clinicians and there would be much to gain from improving the information exchange within the all too brief six monthly (or longer) consultations that many PWPs experience. What I envisage is some sort of checklist or questionnaire should be developed. Clinicians would get information in a familiar format that they can quickly assess and patients could highlight anything new they have noticed and flag up what is important to them. Ideally this would be done on line and form part of the medical record.
Now as far as I know, my Parkinson’s team don’t have such a system. My appointment this coming Wednesday is an important one for me; 5 years post diagnosis seems a significant milestone, so I have tried to create a communication aid. I have spoken to the Parkinson’s nurse and sent, in advance of my appointment, a table describing my symptoms, questions I have about managing them, checking my understanding of whats going on and also some questions I have about some bits of research. I don’t think its a template for everyone, my three pages of info is very much based around what is important to me, so it may not contain what the clinicians need, but as least its a start for me.
The Travel Fellowship study also brought to my attention Every Victory Counts a really thorough and useful resource created by the Davis Phinney Foundation in USA. It’s intended for an American audience so not all of it is relevant but its very accessible and helpful. I used some of the worksheets to help me prepare for Wednesday.
Davis Phinney Foundation Staff were helpful with my study too so a heartfelt thanks for all that they do.
Fingers crossed for a useful consultation. Look out for comments later in the week.
Here is an update. I had a phone call from the Parkinson’s clinic suggesting a different appointment date when I was more likely to be able to see a consultant, who would be more likely to be able to answer my questions. I’ll keep you posted.
Between the eight 60+ers who make up our pub quiz team we have experience of many of the diseases and conditions associated with aging. We try not to talk about it too much, but recently one of our number came across CBD lollies on sale at a local market. Having nearly mistakenly bought them for her young grandchildren, she decided to try one for herself and had a wonderful night’s sleep. Another team member also gave them a go and quickly moved to CBD oil and considerably less Tramadol. A friend in Australia sent me the link to a demonstration on the positive effect on one woman’s Parkinson’s symptoms. Quite convincing!
Now I am one of those who avoids medication wherever possible. I have to be persuaded to take paracetamol or ibuprofen for a headache and need evidence that any drug is going to be useful. On the other hand I am quite content that dark chocolate and red wine are good for people with Parkinson’s with minimal evidence, and am quite happy to add live yoghurt to my diet to improve my gut microbiome. Today’s Science of Parkinson’s blog also reminds me that one person’s experience can spark a lot of research. Jill, the woman who can smell PD, has stimulated many developments.
So here’s my dilemma do I treat CBD oil as a medication and demand lots of evidence or as a substance that I can justify trying on the basis of the benefits gained by my team mates?
Our team does actually win in the quiz sometimes, so tonight the eight of us plus our quiz master are all going out for a meal on our winnings . One thing is certain I won’t be trying a lolly tonight. I don’t think they’d go with curry!
When I look back 5 years to my written reflections, I see that I have said to myself “The best thing to do with a bad experience is to make use of it!”, and I don’t think I’ve made a bad fist of taking my own advice.
Very early on I drew on my storytelling background and created “Sorting the Sock Drawer” a one-woman show that intertwines a traditional style folk story with my personal experiences of having Parkinson’s. The idea was to share the things that have made life easier for me e.g. bamboo socks, an electric bread knife and lots of exercise and also to help those who don’t have the condition to understand what it feels like. Gratifyingly, its been well received at every performance and the positive feedback I get is now in itself something that makes life better for me. I have found that people with Parkinson’s have a great capacity for humour and the show reflects this, not to trivialise the impact of PD but as a way of keeping positive, everyone feels better for a bit of laughter.
I did lots of internet research in those early days and very soon found out that many people with Parkinson’s have a problem with their voice. The thought that the condition would steal my voice while I still had lots to say terrified me. Worse still recommendations were to exercise your voice as soon as possible to avoid problems, but there was no way of getting any therapy as there appeared to be nothing wrong with my voice. I felt a group focussing on using the voice would be helpful and worked with the local Parkinson’s Uk service development officer and SLT team, here in Cardiff and the Vale of Glamorgan to set up and lead “Live Loud!” a fortnightly group in Cardiff dedicated to the use of the voice. Now nearly 3 years later the idea is being rolled out more widely.
As I was researching I realised that many people with Parkinson’s did not know a lot about their condition and I started to think about Patient Education. I wondered if there were good models elsewhere and applied for and was awarded a Winston Churchill Travel Fellowship to travel to USA and Argentina during 2017. I wouldn’t have done that if I hadn’t had my “bad” experience! I hope my report might have some positive impact, and help to move the “dinosaur” that is the NHS.
Currently I am working on a new idea, bringing together storytelling, personal development and creative activities to help those living with a neurodegenerative conditions regain their positive self image. When someone tells you there is something wrong with your brain its a blow to your very self. The pilot is called Slow Motion “SELF”ies , its hosted by Beyond the Border International Storytelling Festival and supported by The National Lottery Community Fund. Sessions will be in Cardiff and Swansea in the Autumn, please get in touch if you are interested.