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.