Collecting Ideas for 2016 Survey

Hello everyone,

I'm starting to think about what to cover in my autumn survey this year. I've got a short survey which I'd welcome anyone to complete if they've got any thoughts.

http://www.surveygizmo.com/s3/2798869/88680a3a74e1

Time-scale wise, I'm getting my thoughts together over the summer to launch in ~September.

AFO - Ankle Foot Orthosis

Some weeks ago I had a joint appointment with my physiotherapist and my orthotist. Conversations with each individually had been questioning if it was right for me to get an AFO (ankle foot orthosis), but also suggesting that I talk to the other specialist. So, the easiest thing was get them both together and discuss this openly.

They both watched me walk and the conclusion was that I am right on the borderline for needing them. My left leg is a bit tighter than my right leg, and we agreed that I would start by getting one AFO for my left foot.

I find that walking is more challenging when one (or more) of the following is/are true:

• Tired
• Stressed
• In a hurry
• With an awkward load
• After a few drinks

Therefore, I'm generally fine in the mornings, but things do deteriorate as the day progresses, especially if several of those points are ticked off. (You can draw your own conclusions about my 4-year and 7-year old "awkward loads", actually it is mainly their baggage rather than them!)

I decided that I would wear the AFO in the evenings (when going out) or when I was expecting to be suffering from several of those points at the same time. The order was placed there and then.

Last week I picked up my own Helix AFO http://www.orthoticcomposites.com/helix-afo/ (left, large).  This is a carbon fibre AFO. Reasons for choosing a carbon fibre one as that I still have lots of power in my muscles and the flexibility in the carbon fibre allows me to use some of that power whilst walking - it allows me to be dynamic, rather than just holding the foot in a fixed position. Having a flat surface means that I can use the AFO in combination with my insole(s). The general advice from my orthotist on collection:

• Build up the use gradually from day-to-day, starting with a couple days at half an hour, then ramping up over a week.
• Stop wearing it if it rubs.
• The weakest point is the join between the foot plate and the strut, so avoid big ankle bends!

I asked how long it would last - she said that someone wearing them full time might expect a couple of years use, but that is dependent on how mobile they are. As I'm only planning to wear mine in the evenings occasionally, I'll speculate ~6 years expectancy.

Yesterday, one of my colleagues retired from work, and there was a celebratory social gathering in town in the evening - a perfect opportunity to try out the AFO. It worked really well, I'm fairly sure that there was less scuffing of my toes as I walked to and from the bus stop/pub. Obviously I need to try this a few more times and see how things develop, but I did feel good not having to worry too much about my feet scuffing. It makes me realise that all those subtle small changes do add up over time. Conclusion - I expect that I'll end up with 2 of these at some point!

Although the AFO is quite discreet, I walked past my barbers on the way to bus stop, and he noticed it through my trousers, but then he has an inch and a half block in one shoe to equal his legs out. No-one said anything when I was in the pub. However, I must trim the strap so that it is a bit less bulky. (My boys are not sure if the AFO now makes me a cyborg or not....) 

p.s. I must apologise to my orthotist - I just went for broke and used the AFO all evening, about 6 hours, without all the gradual use build up - I did a short build up on the day I got them and then no more. 

What does it look like? - Here are some pictures....

With the insole....

In a shoe.....

Re (act) community

April was a busy month, not only did I get the write-up done for the Drug Re-purposing conference, I also found out about more HSP communities, which I describe one of here, the Re(Act) Community: http://react-community.org/diseases/606

This community aims connect researchers and ideas through cooperation and collaboration and promoting scientific projects through crowdfunding. They aim to be a game changer, spreading the voice about the urgency of investing in rare and orphan disease research. They believe that everyone can contribute to support scientific research and the community is open to researchers and to interested patients and other people. I saw this on twitter and spotted quickly that HSP is one of the rare diseases included.

I signed up and became the second follower of HSP. The site needed 15 followers in order to "unlock" HSP, so with a bit of twitter, Facebook and LinkedIn action I found enough interested people to unlock HSP - and thanks to all those who signed up!

Now that HSP is unlocked interested researchers can submit their proposals, and we can test the crowd funding side of the site. 

Readers are welcome to join in and support, as a patient or just as a follower. You will need to:

• Register with the site
• Go to HSP
• Support/follow it

There is no commitment from you to do anything! You can choose to get notifications or not from the site.

If there are any researchers reading, you are also welcome to join in. Researchers are able to submit projects, which are screened by the sites Scientific Advisory Board.

On the crowd funding side of things the website seems only to have one project up and running at the moment, so it is in its early days. People can donate money in if they wish (the site takes 10% of donations to cover costs), and people can donate money to HSP specific projects if they wish.

I note that not only is the umbrella HSP term there, each of the SPG variants is listed separately. This comes because the site gets its list of rare diseases from a database which includes both the umbrella term and the specific SPG variants. I decided to also follow some of the SPG variants, other similar conditions as HSP (including ALS, PLS, CMT, Friedrich's Ataxia) and rare conditions of others I know (including MD, Turners Syndrome, Ehlers Danloss), and some of the more common hearing ones (including Meniere Disease, Alport Syndrome, Vestibular schwannoma).

You can follow the site here:
https://www.facebook.com/REACT.community.official
https://twitter.com/react_community?lang=en-gb
The site is set up and run by:
http://www.blackswanfoundation.ch/

In summary, I was very pleased to be able to get enough people interested in this in order to unlock HSP, and in fact that is now the condition in 4th place, follower wise, on the site, whereas at the beginning of April there was, like many other diseases, just one follower. I'm pleased to have gotten another potential research channel unlocked, but actually getting researchers to get involved might be a bit more of a challenge, though!