A virtuous cycle

“If you need something done, ask a busy person” they say. And they’re right. You see, what keeps busy people busy is that they’re getting things done. Add the thing you need done and it joins their list. They’ll get it done too.

Or you could set out to start getting things done yourself. Start with small things. Once you set out to accomplish one thing, as soon as it’s accomplished you want to tackle another. It’s contagious. Add the thing you needed done, and you’ll get that done too.

There are two schools of thought on approaching a to-do list. One says to prioritise the most important projects and focus single-mindedly on accomplishing them. I disagree. My recommendation is to intersperse that work with a number of smaller easier tasks so you’re notching up a continuous stream of accomplishments along the way. (As Adm. McRaven said in the inspiring commencement speech at UT in 2014 “If you want to change the world, start off by making your bed.”)

I feel the same applies to exercising, especially for FAers. Next month the first RideAtaxia Australia event will be held in Melbourne and it’ll be headlined by Kyle Bryant and Sean Baumstark, the two FAer stars from The Ataxian, a movie which chronicles their participation in the Ride Across America event in 2011 (now that’s a virtuous cycle!). But no-one just takes part in such a huge endeavour straight off. The secret is to start small.

Accomplishing things is habit-forming so set small targets at first, even very small targets. The challenge isn’t to do the big thing so much as it is to do something. Then do a little more and then a little more still. That’s our virtuous cycle – set yourself targets that are realistic and you’ll enjoy achieving them. Then make those targets a little more challenging and enjoy achieving them a little more. And so it’ll go on.

Every FAer should exercise. Focus on what you can do, no matter how modest. Then next time do just a little more. If you want to read a little more about this, there’s an excellent article here

To register for fara’s inaugural rideATAXIA Australia click here

Support FAN’s virtuous cycle in RideAtaxia Australia 2018 by clicking here.

Terry O’Hanlon

fara Ambassador

It's only a phone. It lets me be smart!

According to Deloitte, smartphone penetration in Australia is at almost the highest level in the world, at 88% in 2017. They're so useful I reckon penetration among FAers should be 100%.

Here are just three apps I have on my phone that are particularly useful considering that I have FA (there are lots of different versions of each of these you should be able to find one that's free):

Flashlight: Humans primarily use three functions to balance. 1. The vestibular system, the three interlocked, liquid-filled little rings inside our ears. 2. Feedback from whatever part of our body is in contact with the ground (usually our feet). And 3. Eyesight. With FA the first two deteriorate quite dramatically so we tend to rely disproportionally on sight. If your mobile phone has a flash, you can install an app that controls it as a flashlight. So long as you have your phone with you, you'll always have access to light. This is invaluable. (Personally, I have my phone on a lanyard around my neck, so I can have a light on and two hands free if needed).

Heart rate monitor: Dr Lynch says that when death is caused by FA, in more than 65% of cases it's directly attributable to heart complications. The two complications most common in FAers are 1. Hypertrophic Cardiomyopathy (thickening of the walls of the heart) and 2. Tachycardia and/or Atrial Fibrillation (irregular heartbeat/heart rate that goes bananas from time to time). The good news is that because heart complications are an issue for so many non-FAers too, there's lots of care available. FAers who attend the Brisbane Clinic will be having an annual echocardiogram (where they monitor for cardiomyopathy) and perhaps also 24-hr holter monitoring (where they monitor for tachycardia and/or atrial fibrillation). It's worth installing a heart rate monitor app on your phone so if ever your heart feels like it's racing you can check if it's really so, and be able to tell your cardiologist at your next appointment.

Sound level app: The hearing issue most often experienced by FAers is difficulty isolating a sound (like the voice of someone you're having a conversation with) when in a noisy environment. Again, we're fortunate that high levels of ambient noise are increasingly being recognised as hazardous to all and there are apps available to monitor the situation. My favourite is Soundprint which not only lets you monitor where you are but also post a note for other users. Consequently there are results already posted by users all over the world, including Australia, that you can check before you go out.

What other apps do you find useful in living with FA?

Terry O'Hanlon
fara Ambassador

 

 

Do you like big buts? Well this one’s huge!

In the many years since diagnosis, how I describe FA has become pretty standard: with resignation. People would enthuse to me back then about how fast progress was being made in medical research and assure me how convinced they were that there would be a breakthrough in FA that I’d benefit from very soon. As time went on though and my FA progressed, it’s felt appropriate to become stoic. I’m a big supporter of FA research, but I became increasingly convinced that it would benefit FAers much younger than I when a breakthrough was eventually made.

FA is a neurological condition, it’s progressive and degenerative. I do everything I can to slow that progression but even if I’m successful all I do is slow it down, the progression is still happening. However my condition is today, tomorrow it will be a little bit worse. There’s neither treatment nor cure. It’s inexorable and irreversible…

… but that’s not quite true anymore.

Work done at UCLA in America (https://friedreichsataxianews.com/2018/01/02/friedreichs-ataxia-symptoms-largely-reversed-in-new-mouse-model-from-ucla-researchers/) and other work done by Helene Puccio in France (https://friedreichsataxianews.com/2017/09/30/iarc2017gene-therapy-seen-to-reverse-sensory-ataxia-in-friedreich-ataxia-mouse-model/) has shown that FA symptoms can be reversed once researchers find a way to get our cells producing frataxin properly (https://friedreichsataxianews.com/2018/06/05/gene-therapy-fully-reverses-friedreichs-ataxia-changes-mouse-study/).

They’re still quite a way from achieving that but I don’t care. I want them to do their work diligently and get it right. Treatments will benefit me whenever they’re proven, especially the holy grail of DNA editing so cells will produce frataxin efficiently. Supporting fundraisers is all very well but when it’s personal I’m more engaged. I’m impatient again and it’s a good feeling!

Terry O’Hanlon
fara Ambassador

Spiritual Healing

Spiritual Healing

I am at a stage in my acceptance of Friedreich’s Ataxia, where I am not always looking for a cure (although, this would be handy!). Rather, if something pops up in my life, which may better my wellbeing, I jump at it. For example, I have started doing a form of physical therapy called Bobath. It is by no means a cure for FA, but it might just get my body moving more effectively. This may mean a decrease in falls & pain. No, it’s not a cure, but it’s definitely a win.

Finding Hope Amidst a Debilitating Disability

Finding Hope Amidst a Debilitating Disability

The diagnosis

I was a happy, healthy child living on the Gold Coast, Australia when my sister, who is 18 months older than me, started having trouble walking. We would regularly walk the few blocks from our house to the Broadwater and her unsteady gait became more and more obvious. My mum, determined to get to the bottom of it, took her to several doctors. When I was 10 years old the diagnosis was confirmed and my parents were devastated.

A view on meteorology from a physicist

A view on meteorology from a physicist

Neils Bohr, a Danish physicist, is reputed to have said “It’s difficult to make predictions, especially about the future”. He was one of the smartest men to ever have lived. I guess he had an enormous respect for weathermen!

Well for us FAers, predictions are what we seek most in the world. It’s not hard to find out the list of things that’ll go wrong with us. What is hard though is getting an idea of when.