Centre for Brain Research

The Celebration Choir performed at a function last night to celebrate the success of the first four years of the Centre for Brain Research, co-incidentally  the same length of time that I have been having treatment for Parkinson's.  It was a  very happy brilliant occasion  with many of the researchers, philanthropists and staff of the Centre present .  

Professor Richard Faull proudly spoke of the achievements of the Centre which after four  years has 300 researchers having started with 29, I think. Their research gives hope to us who live with illnesses like Parkinson's.  But the vision is firmly in the future and the establishment of the Chair of Neurosurgery  at the University  of Auckland.  We heard of the amazing fundraising achievements and philanthropy spearheaded by organisations like the Freemasons and individuals, Dame  Rosie Horton and Dame Jenny Gibbs.

I am still basking in happiness and pleasure at being associated with the Centre for Brain Research through the CBR choir in my journey along the Parkinson's road.  The sumptuous meal at the Northern Club was a great way to celebrate the successes of the first four years  and prompt people to support the CBR financially, especially the needs and dreams of the new Neurosurgery Department.

You raise me up!

I listened to a performance of the Celebration Choir singing this at Holy Trinity cathedral when Professor  Richard Faull gave the Reeves lecture recently and that and other snippets of songs we sing are in my subconscious a lot of the time.  I have an ear worm which can get to be quite tiresome except in the case of You raise me up it serves to remind me the importance and value of friends along the journey of a chronic illness.

Not  that Parkinson's seems to be a disease or illness, more of a condition which makes its presence felt in new and tiresome ways from time to time.   However the right professional or friend seems to turn up offering advice or a solution to make life easier. 

My digestive process seems to be sluggish at getting going and I now have some pills to take before meals to get this process working better, as the radiologist's report on what happens after I swallow food showed the problem was advanced.  I knew it all along but all the same it came as a shock hearing the truth. 

The double pink rose is from our garden and has the most beautiful fragrance delighting my sense of smell which is somewhat affected by Parkinson's too.  

I had a dream

Last night or early this morning to be precise.  One of the scary kind . It was on a tropical island way up in the hills in the distance and somebody was calling for help, so I yelled too HELP and woke my poor husband up in the process.  

All the same it was good to be awake and realize this crisis in the hills didn't require my assistance after all. My next little research project will to find out what causes these bad dreams and what I can do to prevent them.  

Hard to Swallow

Last week trekked out to Greenlane to have a barium swallow done to find out what is causing me to gag on some foods, unfortunately some I really enjoy, like apple, potatoes, bread rolls to name a few.  

I got the hospital bus out there and enjoyed the ride through leafy Epsom suburbs with their imposing villas and bungalows.  I forget there  are other suburbs out there.

People waiting for their X-rays looked quite incapacitated and I can be thankful that I don't have broken bones,  touch wood.  When I got to the room where they were doing the X-ray there were these huge machines and  four women - a radiologist, a radiographer, the speech language therapist and a student who was busy spreading what I thought was cream cheese on a piece of whole meal bread. Yum,  I thought, I like cream cheese.  

They positioned me on the machine and showed me where to hang on and then gave me a chalky strawberry-flavoured barium drink to sip. I did what I was told and took some cautious sips.  So far so good.  Then someone said  to me " Do you always gulp your drink of water like this?" 

"Well ", I said, " I did what I was told. A sip is a sip and a gulp is a gulp". So ended up telling myself to have a big gulp of barium drink which slipped down alright. 

Then it was on to the bread and biscuit, both with cream cheese topping.  Yuk, it was barium paste and my cautious mouthful made me gag of course.  The biscuit was better as I turned it upside down and fooled myself into taking a bigger bite.  It didn't slip down easily though and it looks as though solid food is not getting on its way to the stomach as fast as before.  They are going to come round with the CD and report and discuss it with me some time.

So that was that little procedure. 

Jawing off

My eating problems have further increased with a very sore jaw over the past 10 days or so.  First I thought I might have an abcess on the gum or toothache and rang the dentist who said  in which case antibiotics would be called for so i went to the doctor who prescribed them for me and examined my jaw but after taking the drugs for the weekend there was no improvement. 

Then went to the dentist for an X-ray and he now thinks it is TMJ disfunction.  This is the temporal mandibular joint and its painful muscle which I can apply heat to or massage gently.  It makes eating and opening my mouth for getting food in hard and painful.  Chewing is difficult.  

However have further modified my diet to have softer vegetables and smaller and thinner pieces of food.  Thin sandwich bread instead of toast bread for breakfast, no hard crackers or crunchy apples, or hard cheese but instead have discovered some nice Woolworths Select Rosemary and Wheaten biscuits, juicy pears and kiwi fruit and cream cheese.  

The good news is that things seem to be improving over the days a little bit.

Looking forward to some broad beans in the near future.  Roll on Spring! 

Doing My Bit

This is a new dessert dish that I bought at the Meissen factory last year.

First strawberries of the season, albeit Australian ones.

Yesterday took part in some nursing training along with about another forty older people.  We were each interviewed or chatted to by 1st year nursing students on our health , nutrition and well-being  - three different  students for about 15 minutes at a time.  They were about 19,  most of them, nice young people and it was not hard for me to talk  about  my health issues and attitude to them.  I think it was part of their inter - generational studies course.

We were told they were very nervous but I think they got over that very quickly,  judging from the buzz in the room.

We were given a nice afternoon tea and a $20 Westfield card which in my haste to examine and think about what I might spend it on promptly lost while putting it the envelope back in my bag.   Have emptied both bag and handbag to no avail.  will buy something nice anyway with $20 of my own money instead!

I have been having problems with swallowing when I eat lumpy or hard food so I am starting to modify my food options.  Bought some nice salmon spread,  Moroccan carrot and honey dip and  Australian strawberries for lunch from Nosh yesterday.  Sliced the strawberries and steeped them for a while after sprinkling them with  icing sugar and enjoyed them with creamy rice pudding made in the old crockpot  I have not used for a while.

The speech language therapist happened to ring to touch base and see how I was getting on so the upshot of that I am going to have a scan of my swallowing mechanism at Greenlane in a couple of weeks and they will be able to see what is happening when I swallow food and where it goes or doesn't and shouldn't but should!

Parkinson's Meeting Day 2

Thankfully the day started an hour later at 10am .  I was feeling rather jaded after a wakeful night although I was very tired after the hype of the first day.  Met up with a couple of other Kiwi women briefly beforehand and then it was into the non-motor symptoms , the theme of the second day's presentations. 

 Simon Lewis  spoke on sleep disturbance, which I experience from time to time.  There is daytime sleepiness and then the night problems of not falling asleep easily, lack of REM sleep which affects memory, then the vivid or disturbing dreams in which PD sufferers often lash out and act out their dreams, sometimes hurting themselves or their bed partners. Have yet to experience that one! 

His hints for poor sleep include the usual avoidance of caffeine after 4pm, don't think alcohol will make you sleepy, no hot baths (pity), don't eat too late  (its 9 pm and we have just got in from a late meal at a Vietnamese restaurant - steamed chicken and the most deliciously fragrant broth with glass noodles and green herbs and veges. Naps should be no longer than half an hour.  If all else fails it is better to get up  and relax in a dim environment before having another attempt at nodding off.  

The obsessive compulsive disorders were the topic of the second session by Antonio Stratella.  They are often triggered by the dopamine agonists  which I am not on.  However excessive computer use and shopping are two addictions that were mentioned that I can identify with.  Those who know me know how much I like my iPad and the propensity I have for op shopping.  At least things don't cost too much at the op shop and I often take things back a wee while later albeit to another op shop to save face.  It is a vicious circle - too much dopamine leads to ICDs, not enough leads to anxiety, panic attacks and depression.

If the prospect of that was not bad enough the next talk by Jennifer Goldman on cognitive impairment and dementia was slightly worse.  PWP are susceptible to slower thinking, executive dysfunction , short term memory loss, visual and spatial acuity loss and language problems. Other things like illness, sleep problems, hearing and vision problems, head trauma and medications all make life harder for the PD sufferer too, she said.

There are strategies for overcoming these serious complications - things like exercise and rest periods.  Make lists, label things. Keep track of the calendar and current events.  Have a social life. Use pill dispensers , look at home safety and declining driving .  

Strategies for speech and swallowing by Debbie Phyland emphasised the positive too, outlining things you can do  to overcome quiet, monotone, breathy or husky voices. Singing is good for one's voice .  Try karaoke , a choir or sing on your own.  Think loud. With others is more fun of course.  

 Swallowing difficulties affect 80% of PWP .  We spend a lot of time chewing and preparing food for swallowing with delayed swallow initiation leading to reduced raising of the larynx resulting in food going down the wrong way or pooling in the throat, rather unpleasant, as I know from experience.  Avoid dry and sticky foods, she said, and have more water.  Cueing could help too - say to yourself chew, stop, hold your breath, swallow.  Worth a try, I would think.  

Then there was a session  by Daniel Weintraub on anxiety and depression which is common among PWP at any stage or age.  It can cause sleep disturbance, weight loss, slow one down, cause fatigue and difficulty in concentration. 

The last session of the day was presented by Lynn Rochester on the benefits and types of exercise. 

Structured repetitive exercise as well as physiotherapy intervention  and aerobics and tai chi all have their good points and outcomes, reducing motor sympton severity in the case of strength training and improving  balance in the case of tai chi so that there are not as many falls.  There is emerging evidence it is good for your cognitive function.  If none of that appeals there is always dance, even computer games were mentioned but not the sedentary type of ones.  All in all an active lifestyle is called for.  Exercise little and often, and don't make it too easy! It is good for your brain too.

And that was the end of day 2, leaving one day of sightseeing on the Monday before leaving sunny Sydney and returning to Auckland.  

Sydney Meeting

We both had a good day today.  Got to the Conference Centre on time and had a profitable day with lots of new information,  including that smokers and coffee drinkers have less of a chance of getting Parkinson's ( they may get other illnesses though) and also that dairy products may be implicated , possibly because of spraying of pastures with insecticides.

Sat next to a nice geriatrician and met up with a few  NZ people which was good. D came back at lunch time and shared my very big lunch of wraps, seafood noodles, cake, fruit and juice ,then went away again and returned at afternoon tea time and stayed for the last session or two. 

There are about 400 participants, half people with Parkinson's, the rest carers, spouses or health professionals. 

The speakers including two from NZ, Prof Tim Anderson from Otago and Dr Barry Snow from Auckland covered a wide range of topics from emerging therapies (Tim Amderson), environmental factors  ( Louis Tan) such as pesticides ( not all people who have contact with them will develop PD - it depends whether the body is able to metabolise the toxicant).

 The genetics of Parkinson's presented by Thomas Gasser was interesting and I learn and understand a little bit more each time I hear about such a complex subject. They think it is years later before the symptoms of a Parkinson's gene mutation present themselves and they don't know the causes yet but just what contributes to it.  

Angelo Antonini from Venice spoke about new treatments,  such as a once-a-day pill, patches , infusions and pumps, as well as the shortcomings of some present ones. 

The afternoon sessions kicked off with an update on causes of Parkinson's disease by Thomas Kimber who said it was the complex interplay of genetics and environmental factors with clumps of misfolded cell material spreading from one affected cell to neighbouring cells.

Then it was Barry Snow who gave an overview on cell therapy past and present finishing with details of the Auckland Island encapsulated pig cell transplants which are in the pipeline for a few people with Parkinson's. These pigs don't have any diseases which could also be transplated because they were isolated on the sub-Antarctic islands for over 100 years and some are now kept in very strict conditions with very few people having access to them so they don't develop any in the future. 

Bastian Bloem was the last speaker of the day and was very entertaining .  He was the Dutch neurologist who had the patient who could ride a bike but not walk and he showed us the video of him doing so. I hope the stationary bike and spin bike at the gym have the same beneficial effect. He also showed a clip of a Czech man with PD who biked down steps, climbed a vertical ladder on to the roof of a building and who could walk on stilts! 

He spoke on ways of improving gait by drugs, surgery but also physiotherapy, speech and language therapy and occupational therapy.  He informed us that patients often develop compensatory strategies to cope with such problems as freezing , the most common cause of falls.  They may not be able to walk very well but some can run.  They can use cues such as a raised or coloured strip on the floor to overcome freezing.  Someone even found bouncing a ball alongside him while walking  ie dual tasking helped him walk better.  

The key thing is to keep active which may slow the progression of Parkinson's, change your behaviour to use the stairs not the lift or escalator and if all else feels get yourself a coach to motivate and encourage you. If you want to avoid falls get rid of the clutter of obstacles in the home because it is lack of space needed to turn that often causes falls in PWP.  Get dancing or fill your life with music and rhythm , there is something for everyone to try.

And that was the end of day one.  

Sydney

We are in Sydney so I can go the Asia Pacific Parkinson's Meeting on at the Convention Centre this weekend. Arrived a day early to settle in and work out how to get there by 8.30 tomorrow morning .  It is a pleasant 15 minute stroll to Darling Harbour part of it through a lovely park.  Saw a couple of Ibis there this morning.  Quite tame they are.

Performance

Is the name of the movie I went to see on the recommendation of a friend.  It is all about a string quartet that has been together for 25 years and is practising for its 25th anniversary concert when the cello player is diagnosed with Parkinson's.  Whereupon  the lives and loves of the other members of the quartet are thrown into disarray.  In the real world of course that does not happen but a diagnosis of PD does have effect not only the person with Parkinson's but their nearest and dearest.

It is a poignant story and has its moving moments which we have in real life too.  A bonus was the lovely Beethoven quartet op 131 which was played in the movie  and which I will borrow from the library to listen to again.  And again . And again.  Music having something in it.

Nods and Becks and wreathed Smiles

Went to a speech language drop-in discussion group  today in which we discussed non-verbal communication  in the face of Parkinson's.

People with Parkinson's often have a blank sad expression which may not reflect at all the way we are feeling.   It is just our facial muscles are slack and we need to make a special effort to smile, nod, blink, avert our gaze from time to time and murmur appreciative clucking noises to show we are following a conversation, listening and taking things in.

Other problems include participating in larger group conversations when pwp may inadvertently miss their opportunity to enter a conversation because they miss their cue to enter by a second and can't get back in and give up.  No wonder they have a glum face and people get discouraged.

I can't say much of this applies to me as I have a very mild case of Parkinson's according to my neurologist and I  have worked hard the last few years to do all the right things to avoid pesky non-motor symptoms which interfere with one's  joie-de-vivre.  I joined a choir for people with neurological conditions  to keep my voice loud and clear .  I go to the gym and tai chi four times a week for exercise and coordination, participating in the social activities with the others to keep fully involved in an enriching life.  I do other exercises at home twice a day to strengthen my throat muscles  and swallowing mechanism.  Two lots of 30 exercises. Pwp often have motivation problems too, another non-motor symptom, so maintaining an exercise or other self-improvement programme is no mean feat in itself.l

The title of this post is a line from Milton's poem L'Allegro, which came to mind when thinking about things for this post.    I enjoyed this poem when studying Milton at uni and school many years ago, so many in fact that I am surprised it came to mind.  I read more  of the poem again this evening and found it very uplifting and affirms my decision to choose the brighter side of life, as opposed to succumbing to the morbid or  indulging in the melancholic, which is dealt with in Milton's other great complementary poem,   Il Penseroso.

Mirth with thee, I mean to live is the last line of L'Allegro and I fully concur.

Priming the Brain

Went to a very interesting talk at the U3A today by Cathy Stinear of the Centre for Brain Research. First we heard all about the factors that cause strokes and things that can be done to avoid those clots that can cut off blood supply to the brain. The risk factors are things like being overweight, diabetic, having high cholesterol, leading a sedentary lifestyle. It was good to hear that half an hours walking each day five days a week is the single most beneficial thing one can do to prevent a stroke. Other things like limiting alcohol, fatty foods, keeping an eye on high blood pressure and avoiding stress are other things we can all do. For those people unfortunate enough to have had a stroke then getting help within the first 4 or 5 hours is critical.

The difference with Parkinson's I think is that people with it are going to get progressively worse whereas with stroke some people are going to get a lot better, others a bit better and some maybe not much at all. However we can all exercise each day and bear the other factors in mind so that in one group of people the deterioration is slowed down and in the other recovery is increased. So hope for all and definitely better to look on the bright side of things.

Another thing I took away was the need to exercise the weak arm and hand and not compensate by using the other one all the time as I have got used to doing over the last few years.

Tulip time

To sweeten up my life with Parkinson's D bought me a bunch of red tulips which look lovely on the mantelpiece in the sitting room.

Our winter duvet has a cheerful Laura Ashley cover with full blown tulips in pink and red too.

I buy tulip bulbs from our local Parkinsons fundraiser and have some from last year and the year before in the frig for a few weeks until it is time to plant them for spring flowering.

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.