HSPRF Workshop

Posted - November 2010 in Living with HSP - Management & Treatment News

Brisbane, 7 November 2010

Eskitis Institute - Griffith University campus

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at the National Centre for Adult Stem Cell Research

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This year’s HSP Research Foundation Workshop was held at the National Centre for Adult Stem Cell Research (NCASCR) within the Eskitis Institute at Griffith University in Brisbane on Sunday, 7 November 2010. 16 people from as far as the Sunshine and Gold Coasts enjoyed meeting other HSPers and learning from the four excellent sessions on offer. It was a definite plus for the workshop to be held where the stem cell research on HSP is being done, giving people a tangible experience of where almost all our funding goes.

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HSPRF President Frank McKeown attended the Workshop, commenting that it was a very encouraging turnout and thanked all who helped make it happen, especially Ken Price the convener, and his wife Helen for a well organised Workshop and a smoothly run day overall. Frank also offered sincere thanks to Professor Alan Mackay-Sim and his colleagues for their generosity in making the Centre available for the workshop.

Each session generated a lot of interest and interaction that was continued in discussions over lunch as well as some socialising. The Workshop is a first in Queensland and lays a foundation for a growing network in southeast Queensland and northern New South Wales.

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Stem Cell Research Progress – Greger Abrahamsen, Researcher NCASCR

Ken Price, workshop convener and HSPRF committee member, welcomed everyone and introduced Dr. Greger Abrahamsen, the researcher who works on HSP, to talk about progress with the stem cell research.

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Greger explaining the Analyser

Greger took the group on a tour of the research laboratories, explaining the aims, methods and results achieved at different stages of the work. As well, he talked about the state-of-the-art equipment and technology employed.

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Tour of Stem Cell facility

Greger talked about growing the stem cells – both normal ones and those from HSPers, developing gene expression profiles for each and imaging the significant differences found between the normal and the HSP stem cells. The sophisticated imaging equipment also carried out unique analyses to quantify the differences seen.

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Stem Cell Laboratory

Greger put it into plain English for everyone, using the analogy of fuelling stations (peroxisomes) and a railroad network (microtubules) to describe energy transport mechanisms and functions going on within the cells. It is these mechanisms and functions that are affected in HSP cells that will become the target for potential drugs in the upcoming research project. The aim will be to identify compounds that help the cell compensate or return to normal function. Read more about the HSP stem cell research going on at the NCASCR on our website.

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Participants had a steady flow of questions throughout and clearly appreciated the hands-on approach of seeing the research in action.

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Achieving and Maintaining Good Mental Health – Jacinta Lipp, Team Leader, Consultation Liaison Psychiatry Unit, Princess Alexandra Hospital; co-presented by Trish Blair

Jacinta Lipp presenting

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Jacinta raised and addressed questions for people to think about regarding this important and relevant, topic for HSPers. What constitutes good mental health? What can affect it? What can you do to gain and maintain it? What is depression? What should you do if you’re feeling down? There are a number of factors which impact mental health. A major issue is maintaining a positive outlook on life, backed up by things like exercise, good nutrition, social connections and hobbies. Download the PowerPoint presentation.

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Trish Blair co-presented the session. She spoke about her lifelong journey with depression, that like HSP, ran in her family – a genetic cause, and of the importance of frame of mind in having a positive outlook on life. Trish outlined 5 steps to recover from depression and stay on top of things.

Beyond Blue 'show' bags

 

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During the Q&A, Jacinta addressed the common issue of frustration. We can be frustrated by not being able to do the things we used to do – we need to find ways to cope. This will vary from person to person – talking about it to others, writing it down to get it off our minds, doing things to keep us occupied such as exercise – the message was clear that it needs to be something that you enjoy whatever it might be.

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Jacinta closed by emphasising the importance of talking with someone rather than going it alone when things get tough.

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Managing & Maintaining Mobility with HSP – Meredith Wynter, Senior Physiotherapist in the Cerebral Palsy Health Service at Royal Children’s Hospital

 

 

Meredith spoke about the potential of Botox for alleviating spasticity in HSP. She gave a detailed account of how Botox is injected into the calf muscle normally in 4 locations. She stressed the importance of being assessed by a doctor familiar with the use of Botox in treating spasticity, saying that it was not suited for everyone, that good results are obtained about 50% of the time, and that the beneficial effects normally last a few months. The challenge is to balance the reduction in spasticity with added weakness caused by the Botox.

Physiotherapist Meredith Wynter

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Meredith said there was new research that showed strength training in the gym is beneficial for spasticity. There are resources available for the modification of gym equipment suitable for use by HSPers. (We will bring you this information when available in a future website edition)

Any program of exercise must include and strike a good balance between strengthening AND stretching. The main stretches for tightness and spasticity with HSP are the calf stretch and the hamstring stretch, both of which are necessary on a regular basis to avoid muscle shortening over time. These exercises should be done with the knee locked so as to isolate the muscle in question to make sure it is getting a good stretch.

A good guide to stretching is that you need to feel it, but you should not stretch so far or so hard that it is painful. Just hold the stretch at the point at which you can feel it pulling, then focus on breathing and relaxing at that point.

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Here is a basic 6 part stretching routine:

  1. Calf stretch
  2. Hamstring stretch
  3. Second hamstring stretch sitting against a wall
  4. “A- Frame” stretch (similar to the downward dog pose in yoga)
  5. Hip flexors—lunge forward
  6. Hip adductors

In closing, Meredith said that because everyone is different in their symptoms, level of spasticity, muscle weakness and related mobility issues, it is highly recommended to initially be assessed, treated and have a program for ongoing stretching and strengthening done by a physiotherapist, preferably one experienced in neurological conditions, such as a neurological physiotherapist. For some people the best results will be obtained with a combination of Botox and physio. Download the PowerPoint presentation.

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Making Life Easier for HSPers – Amber Newell, Occupational Therapist, LifeTec Qld, Assistive Technologies. www.lifetec.org.au

Amber set up a display with a huge range of ingenious assistive technologies to make everyday activities and tasks easier to accomplish – ranging from putting on your socks to getting in and out of the car.

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Amber demonstrating assistive technologies

A number of people already had car seats that allowed for the twisting into the car once seated. Cords to lift one leg or two could be used to assist getting into the car as well or into bed. Amber had the latest in wheelie walkers with independent wheels, adjustable arms and other features which make this device more easily to manage.

Ken & Amber field a question

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A big hit with two of the attendees was a simple device to assist with pulling on socks – probably a bigger hit with one of the partners who has to undertake this task.

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Amber talked about and demonstrated a huge variety of helpful aids that you can learn more about on their website www.lifetec.org.au.

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