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.  

Apathy, procrastination and a just-in-time attitude

I suppose I have always had a propensity for postponing things that seem a bit hard or require some effort, and find other things to do before tackling the initial task.  I was not surprised to read that these traits are non-motor symptons of Parkinson's, probably connected with low levels of dopamine.  

So far I have noticed this in the areas of keeping in touch with people in the way I used to - ringing up, sending a letter or card at birthdays, Christmas or from holiday jaunts.  Other Parkinson's symptons like a whispery breathy voice, small quavery handwriting, a blank facial expression all conspire to make communication harder that it used to be.  

Just the other day somebody said I looked worried, but no, I wasn't feeling worried at all, just pleasantly relaxed, while doing my exercises at the gym.  Maybe I just need to smile a bit more, exercise my facial muscles and practise  doing so in the mirror, so these things become second nature once again.  

Portrait of the Artist

Well had a very busy day yesterday and I had to let go of tai chi and concentrate on my three main activities of  - art gallery to see the contemporary aboriginal art exhibition with the Knitterati, then the lunchtime concert at the library and finally the portrait drawing course I thought I would try.  

We did eyes and the less said about my effort the better.  I don't think I have it in me and won't continue with it , I have decided.  The drawing is quite detailed work, and I found the two hours long, then I developed cramp in the hand half way through.  There were three other ladies in the group who were more painstaking and had more experience.    If it was the art therapy it might have been better as  I would have said what my background was. There will probably be an art therapy course later in the year and I will probably do that then instead. 
In the meantime maybe I will get out my handwork again  and create some art of my own using the resources I have at home.

Anyway back to the art gallery.  I found the art there very moving and learnt more about  historical background of the Aborigines and their plight in colonial days and stretching up to the present day.  I will have to go back again for a second look.  The others probably went back after our coffee break which I had too before dashing across the road to the concert. Had a delicious date and banana muffin (gluten-free, that particular flavour was) and it tasted light and fluffy as a good muffin should. 

Anyway the concert  was the Kotuku Quintet playing a Bach piano concerto and a quintet by a Swiss composer, Frank Martin, composed 1919 which I found rather discordant and loud in parts and I didn't enjoy it as much as the more familiar Bach. I have become more sensitive to loud noise, more so than I was, I think, which is probably also connected to my Parkinson's situation.

After that I had less than half an hour to get to the art class and arrived late.  So not an auspicious start to that part of my creative day.

The picture below is one of Eli's from his sports series.  It is of Steve Adams.  I have it propped up against the fire screen in our sitting room where I can see it, pending my finding somewhere more suitable to put it.  It is very heavy, on wood, so can't really hang it on the wall.

Eli had another picture of two cats fighting in a recent exhibition and was pleased that it sold.

Coffee Time

This week I went to the Parkinson's coffee morning at Orakei, a lovely ride in the train past the waterfront Parnell Baths and  Orakei Basin.  There were about 8 of us and our community educator had prepared a couple of PowerPoint presentations on fatigue and sleep.  Kept us focused. Most of the others have these problems so I am not alone.  

If I wake these days after going to bed I get up straight away and make a milky drink and take half a pill .  I usually go back to sleep though sometimes feel groggy in the morning.

I take it easy the next day  though yesterday had  a busy spell in the kitchen late afternoon dealing to some pumpkin by turning it into a rich orange soup with carrots, potato and a bacon hock.  Whizzed it and it tastes very nice and smooth and is easy to swallow.

Am doing a jigsaw of Mansion House  on Kawau Islamd with the bay in front of it with boats, people ,sand and sea. I am enjoying it and should be able to complete it over the days of a couple of weeks doing a few pieces every now and  then when I pass the open dining room. It is good for the hand-eye coordination and I have to stop myself using my left hand and keeping my right hand nimble too. The photo below is , of course, Rangitoto taken on the way to Waiheke last weekend.

Brain Day

Had a very satisfying day last Saturday attending the Brain Day lectures. This year's theme was the sensational brain ie the interrelationship between neural injury or disorder and the senses. As well I know, the senses of taste and smell are affected in Parkinson's but one's  balance too relies on on the interplay of  the orientation centre in the inner ear, vision ("look where you're going, as somebody said to me recently as I was weaving all over the footpath), and the pressure of your feet on the ground, a veritable muti-tasking act requiring your full attention.  

Another interesting session was on the experience of pain, being an unpleasant sensory and emotional experience associated with tissue damage, real or not. Some people it seems have a heightened response to pain, their receptors are stuck on high and they get amplified pain.  Their on cells, as it were, work overtime and their off cells don't work at all, requiring drug and/or  physio and psychological intervention to get some relief.  

Then there is the damage and sensory disturbance after neural injury eg from accidents or stroke this might be loss of sensation or abnormal sensation such as pain felt from a phantom limb which has been amputated.  Or perceiving things that don't exist as in hallucinations which can be auditory or visual.  

Here again I was struck by the amount of research and the implications of their findings on the well-being and treatment of people affected by neurological disorders.  There is hope for the future.

Taste and see...

F

You don't realize how important the senses are to your joie de vivre until you find them waning.  I am still looking for the ideal cup of coffee and was most discouraged a week or so ago when my decaf latte tasted and looked like hot milk.  I thought it was their fault but on second thought it must be my sense of taste rather diminished by the pallid appearance of the glass it was served in.  

Tried a different cafe after tai chi yesterday and am pleased to report my flat white there was much better and tasted of coffee even though it was decaf.  Caffeine does tend to make me a bit jittery so keep that pleasure for when I don't want to be conspicuous.  The Parkinson's tremor is a resting tremor  and generally makes its presence felt and seen when my dose of levodopa is due, or, sometimes in my case, late.  

Tonight I have prepared some juicy rissoles for our evening meal and  a colourful autumn vegetable stew to go over the potato to make it easier to swallow.  Seasoned of course with plenty of basil, thyme and parsley from the garden.

Bought this lovely soft apricot chrysanthemum at Kings Plant Barn this morning after the coffee morning there with the Parkinson's women's group I belong to.  

Guava Jelly

Celebrated the first day of Autumn by making some guava jelly taking care this time to add a bit of lemon juice and boiling it fast to ensure a firm set.  It has a deep ruby colour as usual and the usual tart flavour .  In the background are my scales, the ones I use each and every day for weighing something or rather.  I have them on the old tea wagon near the stove where it's very convenient.  People with Parkinson's often lose their sense of taste and smell, both of which contribute largely to our enjoyment of food.  I try  to compensate by using colour in food and adding the stronger herbs like basil, rosemary and thyme to add flavour.  

Peaches and Cream

Wish it was all so easy. Our golden queen peaches are ready for picking and preserving right now but I somehow lack the necessary motivation and manual dexterity needed for all the peeling and paring. I have therefore decided to do them in small bursts of activity over a week or so, rather than longer hotter sessions, and give some more away. They look and taste delicious with the passionfruit from our vine which obligingly drops 5 or 6 each day.

Diversions and Brain Teasers

We have started doing jigsaws again, in my case to keep up my hand eye coordination and manual dexterity as well as gaining pleasure. The one we are doing at present is the Plain of  Auvers by Van Gogh in 500 predominantly yellow and green small pieces and is quite hard. 

 Over the last five years I have become quite ambidextrous and able to do a lot of things better with my left hand like carrying a mug of tea.  However I try to keep my right hand limber too by picking up and positioning these small pieces with my right hand.  

I play scrabble each day on the lexulous.com website, just one game to keep brain and hand functioning and of course I enjoy playing too as well it being a great stress buster.  I do enjoy a game in person and have a friend or two who enjoys a more sociable game every few weeks over a cup of coffee and a chat at the same time.  There again multitasking becomes more difficult as time goes by and I find I have to concentrate on one thing or the other.  

My ongoing diversion is still divesting myself of excess possessions on Trademe which is a slow business but each sale is an encouragement to keep going.  Each week it would be 5 or 6 things - a couple of books, a couple of coins and a couple of collectibles.  This week I sold an old preserving pan, no longer good enough for preserving fruit in but ideal to use as a dye pot or hold a large pot plant like an orchid.  I still have enamel basins and big pottery bowls to be listed soon.  Better than throwing them away and somebody gets these things at a reasonable price.  The things in these lower pictures are things I cherish and won't be selling in a hurry if at all because they remind me of people and places.  The picture below was painted by good friend Rae, who gave it to me to remind me of our visit to Launceston and to the Cataract Gorge in particular some years ago.  The yellow pottery bowl beside it is from a trip to Poland in the late 60s. Neither is for sale!