Highlights from the 9th APPA Meeting in Sydney 15-16 June 2013?

[ParkinsonsNZ1]

It was great to see some of you at the conference over the weekend. Were there any particular highlights for those who attended?

[tiggertogo]

Oh yes. The amazing light lunch boxes with easy access sections for the prawns, the salmon bread buns, and cake, plus the easy screw top drink bottle. Did i mention the prawns?Marvellous.

[tiggertogo]

There were also some more sobering aspects to this meeting, chief among them that more studies are required on every research story; That there is still no single cause, no bio marker to identify a cause. But, load of exciting research was highlighted - on exploration of gene therapy and cell transplants, and growth factors, and non motor therapies to slow the progression. The support networks for pwp include support groups which are still vital in providing support education and information for the pwp, family and the health professionals who provide treatment.

[Pollyana]

Good to meet up with a couple of other NZ pwp. There is hope for the future with new therapies such as patches, once-a-day pills, infusions and pumps being developed. Not to mention Barry Snow's pig cell transplants for some lucky Kiwis. Genetics coupled with the complex interplay with environmental factors such as pesticides, or even dairy products they are thinking are probably implicated as clumps, of misfolded cell material spread from one affected cell to neighbouring cells. A little light relief was provided by the last speaker of the first day, Bastian Bloem, the Dutch neurologist who had the patient who could ride a bike but not walk very well. He showed a clip of Czech man with PD who biked down steps, climbed a vertical ladder up the side of a building on to the roof and could walk on stilts. Don't try this at home! Get active instead to slow the progression of Parkinson's , use the stairs, not the lift. If all else fails get yourself a coach to motivate you, avoid falls by getting rid of the clutter and obstacles in the home, get dancing and fill your life with music and song. On that optimistic note Day 1 ended.

[Pollyana]

Thankfully day 2 started an hour later in fine sunny Sydney weather, down at the Convention Centre in Darling Harbour . The Dalai Lama was in town too at the neighbouring Entertainment Centre so there were lots of people in the area.

Non-motor symptons was the theme of the presentations . Sleep disturbances, vivid dreams (avoid caffeine after 4 pm, don't think alcohol will make you sleepy, no hot baths at night, don't eat too late, only short naps and get up and relax in a dim environment before having another attempt at nodding off!) .

Then there are the obsessive compulsive disorders . Those who know me know how much I like my iPad and op shopping, my excesses of choice. It is a vicious circle - too much dopamine leads to OCDs, not enough leads to anxiety, panic attacks and depression. Maybe. If the prospect of that is not bad enough what about cognitive impairment with slower thinking, memory, visual and spatial acuity loss and language problems. Here too there are strategies for overcoming these serious complications such as exercise alternated with rest periods. Make lists and labels for things. Have a social life. Use pill dispensers, look at home safety and know when to stop driving.

Another sobering presentation was on speech and swallowing difficulties but then again the positive was emphasised with tips for overcoming quiet, monotone, breathy or husky voices. Try karaoke, a choir or sing on your own. Think loud. Swallowing difficulties affect 80% of pwp - avoid dry and sticky foods and have more water . Cueing could help too - say to yourself chew, stop, hold your breath, swallow. Worth a try.

Anxiety and depression , common among pwp at any age or stage was the subject of another presentation with the drugs and side effects of them outlined.

The last session was on the benefits and types of exercise. Structured repetitive exercise as well as physiotherapy, aerobics and tai chi all have their good points and outcomes, reducing motor symptom severity in the case of strength training and improving balance in the case of tai chi. Emerging evidence shows it is good for your cognitive function too. If none of that appeals there is dance, even computer games 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 brain too!

And that was the end of day 2, leaving one day of sightseeing down at Circular Quay and a spot of that shopping and a visit to the Australian Museum before leaving sunny Sydney and returning to the colder climes of NZ.

[Hikoi]

Pollyana

What a full report, I am impressed with your memory of events.

There is very little to add except i want to comment on one sentence "There is hope for the future with new therapies such as patches, once-a-day pills, infusions and pumps being developed"

These are in fact all developed and widely in use around the world:

Duodopa Infusions (directly into duodenum) now approved in 30 countries

Apomorph subcutaneous pump infusion is available in NZ

Patches available since 2006 ie - 7yrs used in over 35 countries incl Australia

Ropinerole once daily available since 2007 used throughout Europe (largely replaced short acting in UK and probably elsewhere). Now available as a generic

Mirapexin Sifrol primapexile once daily tab available since 2009 widely used

Most western countries now have a choice of three once day agonists but we have none. I have no hope that we are likely to have one available in the forseable future as it is not on Pharmacs agenda and as far as I am aware there is no lobby for this.