To be or not to be

This morning I wrote a submission to the Parliamentary Health Subcommittee who for the past few weeks have been holding an investigation into 'ending one's life in NZ'.

I had procrastinated but when Lecretia Seales who battled over the last weeks and days of her life to change the law allowing her doctor the dubious right to assist her in killing herself was named New Zealander of the Year by the NZ Herald I decided to have my say.

Here is what I wrote.

As a person suffering for the last 6 years  from an incurable illness (Parkinson's) and known for her zest for life and living, I wish to register my strong opposition to doctor-assisted suicide or euthanasia, or societal pressure brought to bear upon a person nearing the end of life, maybe.

There is enough medical treatment and hospice care available to those experiencing pain and distress in the last phase of life without an added perceived or not perceived pressure not to be a burden to one's nearest or dearest.

 

My friends are continually saying how much they admire me, and humble me and encourage me with their support.

I cannot think of anything more horrifying that having members of the medical and caring professions trying to persuade or suggest or mention ending one's life one's self with or without their help.

Already there is subtle suggestion of making a living will and I must have been asked on at least 4 or  5 occasions whether I have made one and what I want to happen and where and do I want lifesaving treatment etc etc.

It is upsetting and I hate it.  As it is doctors can prescribe alleviating medication which may by the by hasten death anyway and that in my opinion is enough.  

The Hippocratic oath takes care of the doctor's dilemma which makes it clear a doctor upholds life and cares for it, not hastens it from pressure by the actual patient or their relatives or those in society who seek to mould and shape public opinion.

Look what happened to Lecretia Seales - she battled for the right to have her doctor cleared to help kill her, yet she had the privilege of having merciful hospice care and died peacefully having it.

Please ensure the rest of us live to enjoy the same without being wary of those around us denying us it.

I am willing to appear before the Commission to have my views heard in person.

Food Glorious Food

Yesterday was the Parkinson's meeting  I went to in the hall adjoining the lovely old brick church of St Barnabas. I always make a point of going through the church to get to the hall and imbibe a bit of the prayerful atmosphere first.  It might be good for my raised blood pressure too.  

The topic was food and Parkinson's, making sure you get enough of the right kinds of food each day or at least over time to avoid losing weight, becoming weak and falling. Mostly though eating for health and pleasure, using brightly coloured herbs for seasoning and contrasting colours would be my suggestions to counteract the need for less salt and failing taste buds. Often people with Parkinson's report they have a weakened sense of smell too.

It is about getting protein at the right time of the day so that the medication gets through to the brain first. So at lunch time I have my cold meat, fish and/or egg  and in the evening too, keeping to just milk on my porridge or cereal in the morning. 

My blood pressure was up a bit recently so time to reduce the salt intake and try a bit of meditation/mindfulness / relaxed slow breathing to get,and keep it down, on demand as it were.

Time and the hour runs through the roughest day

I

This morning was one of those  mornings after one of those wakeful nights.  Had decided to do without the usual pill as I am usually tired anyway and blow me down I was awake 4 hours later for a good 3 hours.  I had read somewhere that those pills cause hallucinations.  I wouldn't like those. 

Anyway however took the morning slowly and did my marmalade grapefruit slicing. I got  the food processor out and sliced the grapefruit in that, then cleaned the food processor well in preparation for selling it. I don't think I won't make as much as in the past as my manual dexterity has waned somewhat, with Parkinson's making its presence felt in my right hand.  We have been buying different jams and enjoying black currant, apricot with ginger, mixed berry, honey and marmite after never buying  bought stuff. The taste buds are also on the wane so a variety is better, especially the piquant or tangy kind of taste sensations.  

To buoy the spirits further we went into  town for some lunch and a  concert in the library which was good - a school who have given good concerts each year.  Shouted myself some warm fuzzies and bought 2 DVDs of their performances.  

I started a library book , Family matters, by Rohan Mistry about an Indian man with PD who does everything (like moi) for his family, who find it all too much when the chips are down and he has an accident  and breaks his ankle and has to rely on them to toilet him with commode and bed pan and be looked after them.  

All too foreboding but I am engrossed in this book so will carry on with vicarious pleasure. It is actually quite funny image wry sort of way.  Have yet another new McCall Smith to pick up which will be light relief when I finish the other.

Wee wee wee all the way home ....

Recently at the gym we had a gynaecological urologist give a  talk to women of the Never2Old programme on continence issues facing many women as they age or deal with conditions that cause them. 

There are various things you can do from pelvic floor exercises, pills to surgery . Then there is also wearing continence undies to cope with the the odd untimely leaky embarrassment

Parkinson's unfortunately is one of those pesky conditions but I am not yet afflicted but wonder if the racy title black Confitex continence g-string that Eli gave me from his Fashion Week goody bag will be any good. How do I put it on? Perhaps I can wear it under my granny panties, pyjamas or nightdress and try it out! It's supposed to absorb up to 80 mls.  Fancy that! There are other more substantial versions in a pretty pink which I would probably  go for should or when the need arise. In the meantime I'll hang the g- string somewhere as a reminder to do those exercises.

http://www.nzherald.co.nz/Eli-Orzessek/news/article.cfm?a_id=1001&objectid=11503914

Blackadder Blackcurrants

I was listening to a science programme on the radio last night and heard this interesting research into the beneficial effects of eating black currants of or drinking the juice  from the New Zealand Blackadder cultivar of blackcurrant has on the health of people with Parkinson's.  Apparently it prevents the oxidising effect and the production of hydrogen peroxide in the brain  which destroys the dopamine which we need for good cognitive and mood health.

It is a pity black currants don't grow in the Auckland area.  I don't think it is cold enough for them and anyway that cultivar is not yet available on the market yet so frozen berries and juice from its berries is not available either.  So far its  effects have only been tested on healthy individuals not people already suffering from Parkinson's and depression. But there is hope for the future and in the meantime I will drink the blackcurrant juice available on the market.

http://www.radionz.co.nz/national/programmes/ourchangingworld/audio/201767901/berry-good-news-for-the-brain

 http://www.plantandfood.co.nz/page/news/media-release/story/nz-blackcurrants-good-for-brain/

Chocolate and other Addictions

When I mislaid my two new cakes of Whitaker's Artisan chocolate I realised my penchant for a daily dose of chocolate was actually a little more than that. It carries me through the evening and takes the place of a dose of dopamine.  I have my last dose of Sinamet at 4pm so my body is ready for another boost of something and a bit of chocolate fills the need. 

I still have to find that chocolate but in the meantime E found this sweet substitute on the Internet which fills the bill, and is easy and fussfree to make  - no egg, no butter instead oil,cocoa and peanut butter as well as the usual pantry items. I can truly say it is delicious eaten straight out of the mug or with some Greek honey yoghurt for added calories.

http://www.thenovicechefblog.com/2013/02/chocolate-peanut-butter-mug-cake/

My other addiction at present is the computer game of Haste which involves competing with somebody else to make as many words out of a grid of letters in 90 seconds. I play this game several times a day in batches of 5 so I don't waste too much time. I like to win at least one game in each five and may even stop when I have, as I seem to get that feel-good feeling that comes with success! 

Haste by Lachlan T Potts

https://appsto.re/nz/9xUVU.i

Breathing

''Went to an interesting meeting yesterday of a small group of congenial people with Parkinson's.  It was in the hall of an old church in Mt Eden and the change of suburb, the old church, St Barnabas's,  and a lovely flowering cherry outside it gave me a boost too.

The guest speaker was a very pleasant respiratory physiotherapist, Janet Rowley,who trains or retrains people to breathe properly, through the nose of course, not the mouth.  Slow breaths in, slow slightly longer breaths out with a small pause before taking your next breath in.  So breathe in for 2, out for 3, then pause slightly.

The good news is the diaphragm is not affected particularly in Parkinson's  so it is possible to keep on taking those deep nose-to-tummy, breaths which are so beneficial to our well-being and equanimity.

Got off the bus in Symonds St and went for lunch at Gina's Italian restaurant which is known for its excellent Italian cucina.  I had the express lunch $12.50 special, a steaming hot plate of spaghetti pomadora with Parmesan which was most delicious, though possibly not the best choice for a person with Parkinson's.  However being the only person in the restaurant apart from the cook and the attentive Italian waiter it was not an issue

Dropsy

Last week was memorable for the fact that I dropped and broke 2 dinner plates while getting them out of the oven to warm up. No, they were not too hot and not laden with food.

Then I was under the house in the basement putting a jar away and next minute I lost my balance toppled over slightly but dropped the jar and voila! shards everywhere. Picked them up, some of them anyway and will do the rest when I go back down there and bring up one or other of the heaters that were cluttering the place up.

There was a third incident but I have forgotten what it was, and that like clumsiness is another symptom of Parkinson's.  

Oh yes it was my nice blue iPhone which now has an annoying chip one corner.

Then  DH fell in the night, tripping on the bedside mat or over his shoes which were near the bed.  Have decided we should both get into the habit of turning on a bedside light when we get up in the night. In this case there were thankfully no broken bones but bad bruising and copious bleeding from two wounds on one arm. He of course does not have Parkinson's but worries about me and the progression of it in me.  

I read recently in the Neurological Foundation's Report to members 2015 about some research being undertaken by Dr Rebekah Blakemore of the University of Otago, Christchurch who is investigating  the role of acute emotional stress in the impairment of motor behaviour in people with Parkinson's and the effect of effective state on precision-grip force control. "Understanding the impact of stress on motor behaviour may inform development of emotion-movement interventions to improve motor function in PD". 

Let's hope so because dropping things, tripping, being clumsy and holding things up in queues for  buses or supermarket shopping are other  stressors PWP can do without.

Book Launch

I don't often go out at night but I did last night and got the bus along to the Women's Book Shop on Ponsonby Rd .  It was the  launch of Ann Andrews's second book, Grandma's brain, with delightful illustrations by Sally Hollis-McLeod of Ann, her grandsons and even her husband, George, in the guise of neurologist.  

It is a picture book for young and old.  It arose out of questions her young grandsons had  about Ann's symptoms of Parkinson's and her clear and reassuring explanations for young and old.

World Voice Day in Auckland

Thursday was  World Voice Day and the Celebration Choir played a big part in the Auckland celebration.  New Zealand would have been the first country to celebrate the occasion being ahead of other countries by a number of hours depending where.

So,our usual Monday session was transferred to the Thursday, meaning I had an extra activity to fit in, with tai chi and meeting with the Knitterati beforehand. Managed to encourage Dieter to come out with me as visitors were welcome and anyway I think singing would be good for him too, indeed for anybody.  

Got the train, one of those new smooth-running  electric trains out .  The route goes parallel to the waterfront with the Waitemata Harbour on the left and the Orakei Basain on the right  and always exhilarates me on a fine day, which Thursday was. 

Autumn came with a vengeance earlier in the week and caught me unawares so it was good not to have to think too much about getting there and back without getting cold or wet. Feeling tired,hungry or thirsty can complicate things too but with a special afternoon tea this was not the case. Having Dieter there too was company for the journey there and trek home, on the bus this time , anything for  a change.

There was a bit of a festive atmosphere with a Skype link on a big screen to a group of music therapy students and their smiley professor at Victoria University.  There were four or five students and when they sang it sounded like 14.  They sang a special Maori waiata which had been commissioned for them. They seemed to be all international students and they sang several verses probably by heart.most impressive. We have Maori waiata in our repertoire too but I find I can't remember the words past the first line or two. It is much easier remembering words you know the meaning of. Not that I don't know some Maori words and what the songs are about after a while.

We did a few different things too in the way of warm-up exercises. After five  years in the choir I like a change rather than doing things the same old way.  We cottoned on very quickly I thought.

Wendy who works as an occupational therapist in a hospice and who used to come to our choir with another member and play the guitar  for us too, brought along a big box of musical instruments, like shakers, rattles, taught us a fun song with musical accompaniment to the tune of McNamara's Band.  I chose a kazoo which modifies the voice when hummed or vocalised into making a buzzing sound. 

Hearing this loud noise coming from me was quite a surprise.  It did not seem to be very tuneful to my ear and probably wasn't, but nobody told me to shut up. As Parkinson's progresses the voice does often tend to become quieter and I for one certainly don't like loud noise or music especially if it not to my taste. But that is another story. This,activity was fun and we all laughed a lot.

Of course singing or talking to oneself without having the chance to talk to others would be sad, so over a special afternoon tea there was time  for chit chat , socialising and catching up with new and old friends who,  like me, were there for the occasion. 

So all in all a very full and enjoyable day, culminating in a pleasant surprise, a visit from E , who is in the throes of moving back home for a couple of weeks or so, while major reconstruction of the Herne Bay abode gets underway.

Alison Holst

The news of the week is the grand old Dame of New Zealand cooking,  Dame Alison Holst, is retiring because she has developed dementia  and is no longer able to cook the way she has in the past due to increasing memory difficulties.  She has produced numerous recipe books , some with her son Simon, and a couple of generations of cooks, myself included, have made her recipes our own.

It is sad. But that is the cruel way of brain disease, neurological disorders, call them what you will.  People with Parkinson's fall prey to these problems too.  I forget things, I shouldn't. I won't tell you what but if you know me, you probably know what anyway!  It is out of sight, out of mind, just like that.  It helps if I have a good night's sleep and am feeling refreshed.  An early wakeful spell can cause tiredness and forgetfulness  later in the day.  I must remember that! And try and go back to sleep for a bit longer.

As for cooking I will fall back on my favourite Alison Holst cookbook , Simply delicious, which has simple mouth-watering recipes for family or friends.

Brain Day 2015

Today we went to Brain Day, an annual event I had been looking forward to. The Celebration Choir to which I belong was singing at a lunchtime session to show others what and why we do it. I arrived at the session to find myself in the middle of the front row as all the other seats were taken. A bit too conspicuous for my liking but I acquiesced and settled down. Our performance went down well and I enjoyed singing things ike You raise me up! Tried to catch Dieter's eye as I sang it with feeling, as he has been such a colossal help to me , and vice versa I like to think.  Another song of the Carpenters, Sing, sing a song I also sang with great gusto.  

The theme of this year's day was dementia it seemed, from cognitive brain impairment (CBI) to full-blown Alzheimer's, understanding it, dealing to it, treating it, coping with it.  

The first session I went to was Music and dance in dementia.  We all know how important such things as exercise are to keep one fit in body, mind and spirit and dance might be the next thing for me to try after listening and trying out some activities with balloons and simple arm and leg movements.  What fun! As Miranda would say.  The Centre for Brain Research is planning on setting up a dance group which I think might be fun for us to go to but Dieter doesn't want to take part in, being "a shy person". Pity, but if possible I will go for the two of us, cognitive changes in Parkinson's being quite common.  I also like trying new things, especially things I haven't tried for many many years.  I did a year's ballet as a very young child! 

Th next session was on managing pain in the older person, especially those with dementia .  There was two pain specialists from Norway , Bettina and Stein Hasebo who gave the presentation on their experience of seeing the effect of and managing chronic pain in the elderly, especially those with dementia.  The topic moved to end of life care for the frail elderly with dignity and informed and presumed consent to stop or maintain treatment and move to palliative care.  All very sobering and hopefully not a situation for either of us in the near future. The research shows that the things that are so important are one on one socialisation with significant others, regular  family visits, including and especially babies and young children, pet therapy with animals like dogs, the larger the better, they say! 

After that was the choir, as mentioned above.  Saw so many friendly people I knew all over the place and by the time we had some lunch was pretty tired so decided to call it a day and go home.  All in all a very stimulating and worthwhile day.

Early Morning Blues

Another dark quiet morning to wake up to.  I am refreshed after a good night's sleep and my early morning mug of tea , sipped from a lovely big Friesian  blue and white cup which D gave me some years ago.  It had a lid which I gave to a friend who  admired it  and was going to  use it to put on top of her bedside glass of water, and a saucer which now has a chip out of it and also a china insert for making tea with tea leaves. I might try it out with some feijoa tea I have.  I somehow think the tea is too fine not to flow into the mug with the water.  Will have to get out my trusty fine- meshed tea strainer as well. The thought of it is making my mouth water.

Fruity teas could well quench the thirst and ease the dry mouth discomfort I and other Parkinson's people sometimes experience.  Our taste buds get jaded too and some poor people lose more of them than others.  Mine are not too badly affected but I avail myself of the experience of stimulating my senses , smell included , by rubbing herbs like rosemary , basil, or lavender between my fingers as I pass them in my garden. 

I use them in cooking too as well as lots of parsley for colour.  I discovered  some self-sown dill in the garden yesterday which goes so well with broad beans in a white sauce.  I have some little bags of beans from last year in the freezer which I will now use.  It reminds me it is time  to sow broad bean seeds too for Spring now that Autumn is here.  

I heard recently at a meeting I went to that there are about 1000 taste buds in the mouth. In different parts of the mouth too. Hot food stimulates them and makes a meal more appetising. Slow eating sometimes means your meal gets cold and you don't feel like finishing it. Why not heat it up in the microwave for a few seconds.and have another go.

Finished my Monet jigsaw yesterday. It was a marathon effort and took about ten days to do off and on during the day. Will be able to use the dining room table again and have our evening meal in there now that it is not so hot with the westerly sun in the late afternoon. Will be using our impressionist table mats and Monet coasters  for a while to relive the experience.  

I remember the time we were in Rouen and saw rooms of Monet paintings in the museum there and visited the cathedral that features so often in his paintings.  Would be lovely to travel again after a three year hiatus.  It is,something we are working on realising.

Hard to Swallow perchance?

I always enjoy the informative sessions presented by a speech language therapist from Green Lane hospital every few weeks.  The last one was on that vital process of swallowing and the part the vocal chords play in shutting off the airway so you can swallow and not splutter.  This is another very good reason to keep talking and avoid having your vocal chords atrophy through lack of use.  There is always hope  - Use it and improve it works better than the threat  - Use it or lose it.  

I will have to keep up the loud talking, and singing  at the Celebration Choir because it is all interconnected with eating and swallowing. Decided to talk at mealtimes with D rather than listening to the radio.  It is easier to sit in companiable silence but better to keep up the conversation and the physiology.    

At that same meeting there was a stimulating presentation on exercise for  Parkinsons people. All about big and large movements not gentle stretching or small dainty steps.  Oh well.  I can practice those at the gym too.  

It was a very hot day and the bus home was late and crawled along Gillies Ave in the after school traffic. Just one of those things.

This photo was taken out the bus window coming over the Harbour Bridge recently. Good old Auckland. Made me feel good to be alive.

Memories

We both went to a talk on memory at the Y yesterday, getting a few strategies and having a couple of little quizzes on remembering some faces and facts about some people, and remembering a number of objects.  Don't think I did too badly.  She gave us some strategies for remembering things, if one can remember what they are.

The main thing she seemed to be saying is what we all know about the importance of exercise, diet including antioxidants such as nuts,  grains, blueberries, eggs and  fish, socialising, challenging your brain with crosswords, sudoku, jjigsaws or learning new things like a language.  I think there may be something else but I can't remember it!  I think it might have been music.  

She told us a bit about the brain and it's remarkable ability to repair itself by developing new synapses and how other parts of the brain compensate for parts that may be damaged,  

We have heard all that before at Brain Day which is coming up again at the end of March.

What to do when your carer needs caring for!

This was not something I had not thought would ever happen so when it did, I did what I had to - look after myself and look after D. I didn't have much time to think about it either as when the crunch and D was admitted to hospital we had only a couple of hours notice. 

So no more rides up the road to the bus stop , no more trips to the supermarket, no more help with with meal preparation, no more company in the evenings, nobody to weed the garden, bring in the washing, do the vacuuming, watch TV with, talk to, laugh with, confide in , share with for nearly six weeks now.  Not nice.  

All these things,  I took for granted when the going was good. In the meantime I suppose I have adjusted  and accommodated most of the tasks into my week, one way or other.  Friends have helped me on the weekends and I have streamlined my routines. 

Resolutions

Half of January has already gone without my formalising any special goals for the year. There  is the ongoing desire to keep fit and well which I accomplish by going to the gym.  Then there is the desire to keep buoyant and positive and not fall prey to anxiety or depression,heaven forbid. The warmer weather means sleep is lighter and wakeful periods more frequent and  I find myself ruminating more on life and its vicissitudes.

Tied in with the low level of dopamine is my all too long use of my iPad at any time of the day but starting early before rising. This might be one activity which is bordering on the Parkinson's phenomon called punding , the curious repetion of some activity that relieves pressure and makes you feel good if you're luckyl This is one activity that I could try and reduce if only to prove to myself I can do so.let's see.