Swallowing 101 and a New Use for Rosary Beads

Had my last visit from Sharon, the hospital speech language therapist who has been reprogramming my swallowing mechanism to avoid the discomfort eating certain foods.  Now I know better, at least when it is just the two of us enjoying our evening meal.  I find when I am eating in company I forget about swallowing hard, as I found out the hard way when Eli was here for lunch. Iced water with a slice of lemon is supposed to be good too ie cold and sour facilitates the contraction of the throat muscles.

 I have some exercises that I am doing twice a day and practice is making perfect.  My rosary beads are coming in handy for counting the number of times I have done these exercises. 

Swallowing

I am in training this week and next week for increasing the size of my swallows so that I don't get my food sticking in my craw at inconvenient and unexpected times. It happens with stodgy food like white bread rolls and potato and also with hard foods like apple and pears off our pear tree. Might have to stew them and bottle them next year. But hey I will have learnt how to do big swallows all the time by then and be able to eat what I like.

Turned some apples into an apple cake yesterday to deal to the apples and some dry old Madeira cake into a delicious trifle which slipped down easily.

The speech language therapist from the hospital who deals with swallowing difficulties too turns up each day with her laptop and electrodes which are taped under my chin then the ten lots of five big swallows are graphed. I can see what it takes to take a big swallow. Normally the brain alerts you when a big swallow is required but in Parkinson's this does not happen so I have to be mindful all the time and do the right thing.

Coffee Time

Met up with the women in the Parkinson's group at the garden centre cafe this week. Our new field officer was there and is a very nice person and it is good to have someone we can now check things out on the phone with or in person as they arise so they don't grow into problems or worries.

The same day I went to a Speech Language Therapy group meeting in which communication difficulties and swallowing problems, of interest to me , were discussed. Have got a couple of exercises which hopefully will help. One is to repeated 30 times, 3 times a day for 6 weeks! It is a head lift exercise done by lying flat on your back, raising your head about 4 inches, holding for three seconds then lowering your head.

Brain Day 2013

Went to the Brain Day in Auckland again this year .  The theme was Your Creative Brain which I had hoped would give me inspiration to be more creative in the artistic field. 

Professor Richard Faull as usual gave an interesting talk on the wonders of the brain with its folds and areas which are affected in Parkinson's,and the research going on to make the most of this knowledge to prevent and cure, or at least,  alleviate symptoms.

I enjoyed Dr Clare McCann's lecture on communication disorders and music therapy, which has been shown to be especially beneficial to those who have had strokes.

The Celebration Choir performed in the following session, then a panel discussion followed in which a couple of us members discussed our reasons for joining the choir and why we keep going and along with our choir leader and music therapist, Alison Talmage and another helper, Wendy, answered questions from the floor.

I started going soon after it started up and a few months after being diagnosed. No auditions were needed and it was a very pleasant environment in which to sing all sorts of songs, some we remembered from the past, as well as new ones. We sang in parts which was especially challenging for me, hearing someone next to me singing one thing and having to sing something else without getting distracted. It is this difficulty that is part of the Parkinson's problem not being able to multitask as before. I find I can only concentrate on one thing at a time.

So the choir keeps symptoms at bay and they assert themselves later than they otherwise would, things like one's voice becoming quieter, a person with Parkinson's may slur their words somewhat, our faces may become a bit expressionless and we may look as though we are a bit bored, which may not be the case at all.

I reckon music therapy and singing in a choir helps with these things like having more expression in your face. It is good for concentration, memorising words, extending the range of volume and tone of your voice. Parkinson's people often find their social contact diminishes as time goes by and being in the choir has definite benefits socially. People feel more cheerful before, during and after and seems to have a flow-on effect in everyday life. Long may it last.

The last session of the day, The science of happiness by Dr Tony Fernando was of interest to me too and stressed all attainable sorts of things that ordinary people can aspire to and achieve. Things like practising gratitude, mindfulness and compassion, and avoiding negative thinking. It was a very uplifting note to end a very full and interesting day on.

Hard to Swallow

had a visit from a speech language therapist to advise on swallowing difficulties.  I have these issues with stodgy food like potatoes,bread rolls and hard foods like apples.  Apparently there are about 25 muscles involved in swallowing and they slow down with Parkinson's.  I am going to be given some exercises to do morning and afternoon to keep these pesky symptoms at bay.

The ravell'd sleeve of care - Shakespeare again

Anxiety has reared its annoying head recently and kept me awake at night.    I don't mind the periods of wakefulness as much as the inability to function properly the next day because of fatigue .  Probably I shouldn"t go to bed as early as I do because I am often awake again two or three hours later. Our cat Malkovich is off his food which is worrying .

Our cat Malkovich is not well and causing us concern as he has lost a lot of weight and not eating.    

Summer and Parkinson's

Since my last post I have entered my fifth year with the illness. I suppose things are getting a little worse but apart from swallowing difficulties and coughing fits when eating certain chunky foods like potato or bread rolls I am not bothered by any deterioration . Long may it last. I am heartened by the fact that speech therapists also have techniques for swallowing difficulties and I have spoken to one who is going to visit in a couple of weeks.

Christmas with Parkinson's

After four years with Parkinson's the preparations become a little harder, but managed it all yet again  with a little help from my friend, no , lot of help from my long-suffering husband,  Dieter. What indeed would I do without him.  It doesn't bear thinking about.  

Went back to the Celebration Choir, for people with neurological conditions like stroke, Parkinson's and dementia,   again after an absence of a many weeks.  Getting there and back had seemed to be a bit daunting but I realised after going back how good singing  is for mood and how nice the social contact is with the others. Research being done in Auckland has confirmed that. Different benefits for the different conditions I think, but mood and quality of life are a couple mentioned recently.  . 

We had our carol concert the week before Christmas  which went down well with those people who knew it was on in the Tamaki Campus foyer and came to listen,  and those who stopped and listened in passing. 

It was followed by a Christmas party with yummy food.  Now I am looking forward to mid-January when our sessions start up again.

Watched the movie Young at Heart on TV today  which is really inspirational.  Went to their concert in Auckland a couple of years when the Young at Heart Chorus were in NZ. 

Meals and More

It is 5pm and I have suddenly got very tired and hungry, so have had to rustle a quick meal together instead of making something time- consuming from scratch.  Lunch was late and I had myself a couple of delicious egg mayo, lettuce and tomato sandwiches, like ones from the deli across the road where I sometimes have lunch after the gym.  Only trouble was  I  forgot to make myself a drink, or get at least a drink of water so before long I had swallowing difficulties, a euphemism for feeling like I had swallowed a tennis ball and it had got stuck on its way down.  I started coughing as I usually do in situations like this and started feeling nauseous and that was the end of my lunchtime pleasure. 

Moral of the story always have a carafe of iced water and some nice glasses on the table .

Talking about glasses we do  have a few lovely ones.  Usually just one or two  that we have acquired from op shops.  The oldest is an etched 18th century one from Germany which was given to Dieter by one of his relatives in Leipzig.   They had it in their garden house on a ledge. We don't often use it.

Then there are the delicate pale green  Romer.  These two on the right may be crystal, they are very delicate glasses and nice for drinking wine out of in summer. The ones on the left are our everyday wine glasses and we have had them for years and years and years. 

 Nowadays my wine and alcohol consumption is minimal .  I have got out of the habit of it, but if I have to open a bottle for some wine to add to a recipe I am cooking like chicken chasseur, or beef stroganoff  then we enjoy the rest of the bottle over the folllowing days.  We use small wine tasting glasses that come from wine producing villages on the Rhein River in Germany where my mother's sister lived with her husband and family. 

For water we are using odd NZ yellowish 1960s glasses.  You got your drinks in the pub or restaurant in glasses like this.  They went well with Crown Lynn china, and still do.

Last but not least are these handpainted champagne glasses that I bought at a Christmas craft market on Waiheke a few years ago.  I like using them whenever we open a bottle of bubbles - usually either Henkel Trocken  or good old Lindauer. 

Sleep

Shakespeare said something once about enticing the dewy-feathered sleep which is something I could do with at times when I lie awake at night wide-awake.  Somehow sleep, tiredness, rest and wakefulness are all out of kilter at the moment.  Took some action and escaped the city to Surfdale for a couple of days and have regained my equilibrium nicely and broken that pattern.   

Travelling with Parkinson's

I suppose careful planning is the best option. I decided to travel light- my bag weighs just 11 kgs and I just have to be strong minded and keep it that way. Adjusting the medication to the different time zones was a challenge too. Which reminds me time to take a pill now and which one is it for the day?

Had a fall in Singapore. Was tired and hot and wearing sandals and didn't see the rise in the footpath. Probably shuffling a bit so would recommend walking shoes over sandals and have had no problems since. No broken bones anyway and no aches or pains. I was very careful on the cobblestones of Prague too.

The cruise down the Elbe River was fine and I took everything in my stride. A river cruise is an easy way of having a good holiday as there are not too many people and the boats are smaller and one is less likely to become confused and not know where you are as on a large ship.

I did not seem to be the only one with a neurological condition.  One poor woman whose normally solicitous husband gave her the key to the cabin and told her it was near the purser's office got hopelessly confused and ended up as far as possible and on a different deck from it.  I helped her find her cabin and opened the door of it for her as she didn't seem to know how to.  Hopefully somebody would help me too if  I needed it in the future.  For the time being it is fine.

Fatigue and sleep disturbances are other problem areas but I found by taking the opportunity to rest when able to helped a lot and even lack of sleep didn't seem to have an adverse effect the next day . Not until we got home that is and jetlag set in.  And the problem of when to take my medication .  Oh well those wakeful spells are just the time to start dreaming and thinking of the next holiday. 

Living and Laughing with Parkinson's

is the title of a book I just received in the mail today written and illustrated by Anne Atkin, an Australian woman who has written this wonderful book detailing some of the more common and lesser known  symptoms and has drawn very quirky cartoons illustrating some of the situations she has been in as a result, and the comments of people witnessing them.   I saw the cartoons displayed at the Brisbane conference and ordered the book from her online when I got back to New Zealand.   She is a strong believer in the positive affects of creativity and, in her case, art therapy .  And I may even give it a go myself as a result. Both text and cartoon complement each other nicely with just the right amount of medical detail for the most squeamish of friends or family. 

It was published by Memoirs Foundation, Burwood East, Vic., for Anne Atkin in 2011.  ISBN 978-0-9870600-3-7

Creativity

People with Parkinson's  often have very vivid dreams.  I do too but unfortunately don't remember them except when they wake me up.   As a child I had a very vivid imagination and my teachers commented on it as it came out in my schoolwork.   However it was stifled   and emerged once more after the experience of motherhood.   There followed my involvement and participation in the various art and craft forms, mainly for my own benefit and pleasure.  I suppose the therapeutic value of art was explored too as I experienced motherhood at a later age than most.  Later I was a member of a domestic craft and  art group  which is still is an important part of my creative life.

This morning I awoke early after a dream,  with all sorts of ideas for creating/displaying/exhibiting the threads/yarns / strands of my life as I open the doors of my Parkinson's cupboard and come out. 

Trip to Parkinson's Conference in Brisbane

Our main trip this year will be a five week tour or Germany, our last one was two years ago so this short six day jaunt was a practice run at travelling with Parkinson's. I had been reading Bob Kuhn's blog Positively Parkinsons (also the title of Anne Andrew's book ) about his round the world odyssey and been encouraged to think I would cope with luggage, delays, and other pitfalls. We had been thinking of escaping the cold in Auckland so this idea of taking in part of the Australian Parkinson's Conference was good for both. There was a very full programme of about 10 speakers starting at 8.30 am which with the 2 hour time lag with Auckland made it attendable.  All the same such a full day was definitely tiring and by afternooon tea when Dieter appeared on the horizon I tossed in the sponge and left. 

I took copious notes which I find is the best way to remember things having the additional prompt  of the written word.  The only trouble is that my handwriting is becoming illegible even to my own eye. Ever positive,  I realized I was well-off when  I  heard about some of the other things that could and still might  happen to one in my situation. 

I was impressed with the amount of research and dedication to finding cause and cure for PD going on in Australia.  It gives me hope that a breakthrough is not far away and in the meantime there are things  I can do which help maintain quality of life and ameloriate side effects.  As Assoc. Prof  Simon Lewis pointed out Parkinson's is like a box of chocolates - full of soft centres. We are all different and experience similar things but differently.  

More on the individual sessions in future posts. 

Coffee Morning at the Garden Centre Cafe

The six-weekly coffee morning at the King's Plant Barn cafe in Orakei is always good.   First of all it is a welcome opportunity to meet up with the other positive women and be inspired and encouraged by what they are achieving and how they are coping.  It is all about being informed, sharing information and experience and enjoying the gathering with our field officer,  Kay,  in such a beautiful setting.  Yesterday there were pots of brilliantly coloured hyacinths , redolent with their heady perfume, especially welcome as people with Parkinson's  often lose their sense of smell.

Getting from Ponsonby involves  a brisk walk up the road to the busstop (makes up for not going to the gym that morning), a bus ride into town  and an enjoyable train trip to Orakei, past the Parnell Baths, now closed for the winter, but bringing back teenage memories of many visits there,  and to neighbouring Judges Bay for swims.

There are about 8 to 12 of us at the meetings which bring us up to date with what is going on in Auckland - or elsewhere.  Heard about the Parkinson's Australia National Conference being held in Brisbane  on the 12-14 July this year, ie in a couple of weeks time and decided to go over for it, one day of it it turns out. 

Booked flights on points  which is a saving and found a reasonable priced hotel for the three nights we will be in Brisbane before we go up to the Sunshine Coast to visit good friend Pat, and stay a couple of nights there before flying back home.  Will have time in these places to do pleasurable things and have a bit of a holiday. 

I went to Brisbane three years ago when I had just been diagnosed and starfted the rest of my life living with an illness and enjoyably, in spite of it.  So far so good. 

Speech and music

Enjoyed  two lectures at the Continuing Education up at the uni on language, speech and music. It was good to be out and about with the rest of the world on a Saturday morning. There were a lot of early childhood people and speech therapists there and interested others,  all with their little hobbyhorses when it came to question time. The first lecture by Michael Corbalis was on his theory of how language came about as an extension of manual gesture about 200,0000 years (babies and small children still use gestures such as pointing, and sign language to communicate). Facial gestures are added to the repertoire,  further localised in the mouth area, including inside the mouth - tongue and larynx etc. So, he concluded, speech is the miniaturisation of gesture and frees up the rest of the body to do other things . Our language still has such metaphors as grasping i.e. understanding something , we point things out,  and catch your drift.
Then he spoke about brain asymmetry and how right-handedness corresponds with the left side of the brain and vice versa. Both sides are not exactly the same - for example spatial attention is seated more in the right side of the brain and if one's left brain is damaged by a neurological condition then spatial ability to the left can be not as good as on the right.
The sessions were in a lecture room in the old Clocktower Building so going back there was a blast from the past.  We had morning tea in the cloisters and I found a nice lady to talk to also there on her own, so that was nice. $60 was a lot for a morning and I hadn't found anybody among my friends  who was interested enough to fork out that. It is very convenient for me to do things in the city and it often easier to be independent, though nice to have company.

Then  there was the next lecture entitled Speech, language and song by Suzanne Purdy,  a professor  of speech science who outlined some recent interesting research which I will follow up by reading on the internet. It is good to know that even if one side of the brain is damaged by illness then all is not lost - for example both sides of the brain (and some overlap)  are used in hearing music , even musical training in childhood helps in musical memory and singing ability when all else seems to be damaged. She used some examples from our choir singing and one of someone talking and singing a solo. There were images of us singing at various events and classes including ones where I was quite obvious. The research looks promising about how singing keeps the voice strong for people with Parkinson's and of course the social and psychological benefits and better quality of life are appreciated by many of the people in the choir too, particularly those who have had strokes and are in wheelchairs.

Third Anniversary Week

I realize it is three years this month since I was first diagnosed with Parkinson's which at the time was a real shock to the system.   Nowadays I keep up to date with research and do things that enable me to live life to the max. 

Went to a one of the six weekly coffee mornings at the garden centre cafe this week, meeting up with our field officer Kay and 8 or 9 nice women I have got to know.  We had a visit from a massage therapist who spoke about the positive outcomes a good massage can bring about - reduction of stiffness and tension, and an increase of  wellbeing.  In the past I have used massage at the physio  when I have had a speciific ache or pain, not so much to prevent such aches or pains from developing.

Did a zumba class today at the Y this morning and enjoyed moving about to the Latin American music  following our South American instructor Monica.  Haven't danced with such abandon for years, a wonderful exhilarating feeling, and good for the co-ordination and the brain as well.

Coming out with Parkinsons

Most of my friends and many others know that I am getting on with life in spite of a diagnosis of Parkinsons about three years ago.   I thought at that time things would be far worse than in fact they have been.  I can cope with a bit of shaking, a modicum of stiffness on one side and  concentrate on doing things I can do and finding ways to still do the  other things that are affected by Parkinson's.

There are things like exercise on a daily basis which along with the daily doses of dopamine in the form of Sinamet  is the mainstay of  my well-being .  I also find singing in the Celebration Choir  a great morale booster .  I took up indoor bowls to improve the performance of my right arm  and by persevering  and concentrating hard over the weeks and the couple of years  I can manage to hold my own .   I carry on with the domestic crafts and art  I had enjoyed over many years and manage to enjoy travel and holidays.

Each week is full of activity underscored by the fact that I am living with Parkinson's  and I can honestly say that I am living life to the full.