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.

New Group for People with Parkinson's

Went to a meeting during the week to discuss the setting up of a new organisation run by and for people with Parkinson's  and became one of the first 15 needed to set it up. It is to be called People With Parkinson's Auckland and will have a website and Facebook page I believe.  

 Saw the proofs of Ann Andrews's latest book there, a picture book for children called Grandma's brain, illustrated by Sally Hollis-McLeod, who also illustrated a picturebook Eli had as a child,  Grandma's Teeth.  Will buy a copy when it is published and keep it for a while until I find someone suitable to give it to.  

Breathing, Swallowing, Eating and Talking

Who would have thought they were all interconnected, the trick being to get first things first in order then the next will hopefully follow. 

Breathe properly first then take a big swallow, eat what you have taken a mouthful of and best try avoiding talking at the same time! Easier said than done, I might add. 

I have heard about the importance of breathing deeply from the diaphragm from a couple of sources over recent weeks.  The first was at the meeting at the Epsom Community Centre for people with Parkinsons to inform us on the physiology of swallowing and the importance of getting plenty of oxygen into our lungs for the all important task of eating. As it is the muscles slow down, and one simple way of ameliorating the problem would be to increase the oxygen needed to initiate the  swallowing process. 

Another would be to concentrate on the job in hand and avoid animated conversation while eating.  Dual tasking becomes increasingly harder, let alone multi-tasking.

  Another sad fact of life that I found out at another meeting this morning at the lovely dark - panelled St Barnabas Church hall in Mt Eden is that the part of the brain connected with the voice is affected in Parkinson's . Volume, tone and prosody are often  affected.  Once again, the motto is "use it and improve it".  What may seem normal to us often is whispery, hoarse or flat and what seems like talking very loudly indeed is not heard by others as such. There are exercises we can do and I will try and add them to my repertoire. It is almost a full time job!

I am down for some intensive training, the Lee Silverman method which is taught four days a week for an hour or two over four weeks, by which time hopefully good habits have been inculcated and voice quality deterioration halted or at least slowed.  

At this morning's meetings there were a couple of women there from the Independent Living Centre showing and demonstrating the large number of aids and gadgets that go to make life easier in the home, or getting out and about.

I tried a pretty floral folding walking stick for size ( would need cutting down to size) but am not quite ready to be seen in public with one.  If I had aches and pains or felt unsteady on my pins things would be different. 

 

Poppy Time

Knitterati came to Deepest Ponsonby last week to make poppies for the Centenary Poppy Project. By Anzac Day 2015 the National Army Museum hopes to have 18,166 handcrafted poppies, each one representing the life lost in the First World War by NZ servicemen and women.  These are some I made (the 4 at the back) and a couple by one of the other women.  The others took theirs home to sew up and finish off with a button and safety pin at the back.  

I got up early to make some herbed mini muffins with bacon bits and got the room ready, with cups and mugs, brewed the coffee and was ready for the others by 10 when they arrived.  I am out of the habit of entertaining but it was enjoyable,  chatting over our knitting and crochet and munching muffins and other goodies they brought along  too, including Anzac biscuits of course.   

One had brought a quiche thinking it was a lunch gathering , so I rustled together a salad, defrosted bread, and set the table in the dining room,  which was somewhat cluttered as bathroom and laundry had been cleared out in preparation for renovations. Lo and behold, lunch was served. Phew! 

Tulip Time

These poppies I can see from my kitchen window at present and as the song we sometimes sing at the Celebration Choir goes, they raise me up! The tulip is the international Parkinson's symbol, or maybe just the national flower symbol.  Beside them are broad beans in flower and it won't be long until they develop pods with young beans, ready for cooking and eating.  They are my favourite vegetable served in a white parsley sauce with new potatoes and Spring lamb.

I went to a Parkinson's Meeting at the King's Garden centre cafe yesterday on that enjoyable train journey round the Orakei Basin, or it it through it.  There seemed to be water on both sides.  Usually I have my head buried in the Herald codecracker to exercise my brain cells, neuroplasticity being the one to encourage. Each time I think , "this is getting harder and I'll never get it out" but lo and behold had it finished before I got off the bus on the way home.

Back to the meeting, a small group of just seven this time,which was amenable to hear and be heard across the big table over a flat white and a delicious banana and cream cheese muffin.

We had a Community Educator take our meeting who was formerly a social worker so the discussion centred around planning for the future from the vantage point of living in our preferred community environment for as long as possible.  All the same it is prudent to take into consideration steps and stairs for example and what we can do to make our living environment safe and suitable for future needs. 

We thought about retirement villages and the like but none of us seemed to be very enthusiastic about those, especially when they keep 30% of the selling price upon one's demise or other reason for vacating the premises. 

With that aim in mind we are in the throes of getting our bathroom, laundry and loo refurbished for present and future comfort and safety.  It is looking good and  the new shower will be easier to keep clean and not get mouldy like the grouting was getting with the old tiled one.  

All the same I will be making a more concentrated effort to downsize a bit more radically.  Coming up to 2000 bits of positive feedback on Trademe so I am making progress -  you just can't see it!

Co-ordination and Balance

Somehow I think this is fighting a losing battle trying to improve this in my case.  All the exercises won't reproduce what has already gone.  The others at tai chi manage to stand on one leg and move the other foot up and down, round and about, back and forth but not me - unless I am hanging on to the wall.   So far I haven't had any falls or mishaps but in case things get worse I have decided to reduce the clutter of furniture somewhat  so there is less chance of tripping over the surfeit of furniture.  Last week I sold a couple of bentwood chairs, one more with a slightly warped seat, to go. I never actually sat on them just used them to put things on. So my next task is to find places out of the way for these things, or get rid of them too.

I had a week or so out of action with a terrible cold but managed to do a few little jobs around the house and sorted through papers from yesteryear, chucking them in the recycling bin before I changed my mind.  

To take my mind off things I practiced my hand-eye coordination by finishing a jigsaw that had been cluttering up the dining room table for a couple of weeks.  It was only 500 pieces and not too difficult as the pieces were big. The subject matter  was flowers and old china, both things  dear to my heart so I did enjoy doing it, put off only by the winterery conditions in that room on the south side of the house.  Getting back to coordination I found I avoid using my right hand, the side affected by Parkinson's  and have become ambidextrous doing a very good job thank you very much with my left hand.  Better keep using the right hand though so it doesn't become completely useless.

Pain in the Neck

Have been suffering from headaches over recent weeks and have decided it is probably a postural thing from sticking my neck out somewhat.  Have resolved to stand up straight, get plenty of fresh air and try not to worry.  Hopefully they will go away.

Had my annual appointment with the neurologist recently and apart from my rather awkward gait caused by my gammy leg and glute muscle I think she thought the status quo was Ok as far as pills go.  The main thing she said was to avoid fluctuations and suggested having my sinamet three and a half hours apart so as I keep on an even keel throughout the day.

Also went to a coffee morning at Kings Plant Barn last week and caught up with some of the women I see there, all looking fit and well.

Have taken a break from the choir during the last few wet and cold weeks but will start up again. As well as being good for the voice it is uplifting to sing and something I wouldn't otherwise do on my own.

The speech language therapist visited this week too and she thought my voice was sounding loud enough.  She is going to put me through my paces of the Lee Silverman method for maintaining volume.  It is an intensive 4 week programme four days a week for an hour, with an extra 20 minutes of practice.  

I have been trying to find out a bit about the artists of these pictures which belonged to my mother.  The top one is a small watercolour, not sure if it is a print or original by the Austrian artist Faistauer, painted in 1924. The lower two are Swiss scenes , lithographs signed Marc, which was the name Nicholas Markevitch used for his lithographic prints.  

Being Prepared

A couple of years ago after we had a short sharp jolt in Auckland I prepared a getaway bag for emergency use with such things as tinned food, toothbrush, water, a week's supply of pills I take, torch, transistor radio, water and warm clothing.  When I woke round 3am yesterday and heard the wind howling outside and logged on to the internet to see what was up, I got up and put my bag and water bottles near the front door, searched for the torch, no longer in the bag, found it in the dark with the aid of the light of my iPad. 

It had a very weak battery but was OK until morning when there was dim flickering light from lamps and lights, though the fridge, microwave , heaters and other appliances weren't working.  The electric jug boiled water very very slowly and the stove elements, likewise.  

Rang Vector to log the fact and went out and about, expecting to have things remedied by the time we got home about 4.30 but no, no such luck.  Rang them again faced with the prospects of rustling up a meal and a cold night and they said they had assigned the job to a contractor.  Called our electrician at 5pm but there was nothing he could do.  A couple of hours later the house was plunged into complete darkness and this time it was harder to find the torch, and the matches to light the candle were damp and not striking. Lo and behold the contractor was across the road removing a branch from a power line.  

I took to my bed, safest place to be I decided and D told me today full power was restored at 10.15pm. Have resolved to fill up my emergency bag again with more food, a new torch and extra batteries etc.  Hopefully we won't have such an occurrence again for a while. 

Parkinson's doesn't make it easy to deal with such things. Apathy means I put off until tomorrow what I should do today eg replacing those missing items from my bag while I can remember what they are, and anxiety paralyses me when an emergency arises. Must go and do so now.

Use It and improve It

It, being one's voice, and lots of other things of course.   As the years go by, people with Parkinson's often speak a bit softer and their voices change , making communication just that bit more difficult.  

This was the topic of the speech language therapy meeting in leafy Epsom yesterday.  However the brain sometimes has the capacity to renew itself, neuroplasticity, so with concentrated  practice and repetition new pathways may be formed which  slow the progression of potential issues.    All very hopeful for those on the downhill path.  I, thankfully, am not affected very noticeably five years down the track. 

My  new resolution is to return to practising my swallowing exercises and have brought my clock and rosary beads to time and keep track of them, out of the  cold and put them in a handy place so I don't forget.