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Exercise For years I did no exercise at all, stupidly thinking that I would always have the suppleness, and a good degree of strength in my legs. What I realise now, all this time later, is that I was just relying on, and dipping into my muscle reserves. Well those reserves are well and truly gone now at this stage. In hindsight I should have started a concerted exercise program years ago, but thats all in the past, and there's no point crying over spilled milk. For me the net is a hugely positive resource, but I feel like I'm fighting an uphill battle, against an invisible force, and at times I feel that no matter what I do, physical decline is just a horrible inevitability.
After years of sitting in a poor position, my left leg "turned"
in the hip socket, and it is now very difficult to do any exercise,
which requires you to keep both legs straight, like a leg lift.
But I do think it should be a priority for anyone with Friedreich's
Ataxia especially, to keep as strong and supple as possible. Even
if it is only to give you good protection, for the numerous times
you fall, it is more than worth it to put in a little bit of effort,
or as I would describe it, as an investment in your own body. Even in work, reaching out for the phone, or to pick something up, can be hit and miss! A colleague thinks it must be due to my clumsy hands. Yes, they're clumsy, but its basically trunk weakness that is responsible. Once I leave the secure anchored position, I tend to be floppy. Now I'm trying to do side bends and raising a light dumbell with arm outstretched, from my side straight up (holding onto something stable with the other hand of course). Maybe its all in the head but after my first attempt at this move, I felt more stable.“The first role [of the obliques] is stability of the torso in running, jumping and landing and maintaining a strong pelvic and spinal position. Without strong obliques (and abs) to hold the pelvis stable, stress is placed on the hamstrings, which often leads to muscular tears or over-dominance of the external hip rotators. A
strong abdominal oblique mechanism is important for reducing side
impacts on the body seen in tackling especially in NFL, Rugby Union
and Rugby League. Obliques [also] play a significant role in co-ordination
and timing in rotational activities such as swinging a bat or golf
club. Not only do they assist in the concentric movement but also
the eccentric slowing down of the torso which is required to reduce
injury,” says Paul Collins (www.thebodycoach.com),
an award-winning fitness instructor in Australia and author of Core-Strength
Basics and The Body Coach: Firmer Thighs and Waist, (available at
Amazon.com). That was the situation for years, and then very quickly the remaining strength in my legs took a serious nosedive, and now I tend to almost exclusively use my arms. Looking back it makes perfect sense, "use it or lose it". For the first few years I was just like a "normal" person sitting down, I remember going to an annual FA social and seeing lots of young people with very skinny almost withered looking legs, pointed feet and twisted torsos which made it hard for them to sit properly.Now all this time later, and I am in that same boat.
Don't be fatalistic and assume there's nothing you can do,because
honestly every little bit helps, and even if you just concentrate
on your arms, it will pay dividends. The amount of times my arms
have saved me from a fall, or helped me up from a fall are testament
to that. I've never had sustained physiotherapy, mostly due to my own insistence. I would much prefer someone to come out once, and show me what to do, rather than me taking time off work to go through the same drill every week. I now "swim" every sunday, and my bedroom is cluttered with dumbells, barbells, ab chair, ankle weights and more from those infomercials you see on late night tv. A great and inexspensive thing that I got in Tesco, was a little cycling unit which is very small and compact, and which I use by hand. You can adjust the intensity, and believe me, 10 mins will tire you out. That and my cheap resistance band are my two best fitness buys. Also
I'm including a photo of all of the above and my ab chair, which
sadly has been long relegated, and at this moment, the only thing
that is saving it from the scrapheap, is the fact that it comes
in handy just as a replacement chair. It is good not to sit in the
same chair and position all day, and I prop up the back of it with
a book, so it tilts, as I read that this sort of position is good
for your pelvis. I'm not sure if its just another gimmicky site trying to make a fortune from desparate fat slobs. If only it was as easy as popping a pill or two, in between your see food diet. Part of it sounds convincing, my metabolism at the moment must be slower than a snail's. Anyway read about it here, and make up your own mind. It doesn 't sound great to be stick thin in a chair with no strength to push it.I am making slow progress but I am now in the mid 20's. Its not very appealing to look like a pregnant young GUY, but it didn't happen overnight, and its going to take a while to move it. The
worst thing about having a gut and being in a chair, is that it
is practically impossible to hide it. Especially when your posture
is poor, it tends to be impossible to "suck it in", so the big belly
tends to be the first thing you notice. Its not great for the self
confidence levels, when you tend to be the classic "apple" shape.
I wish all my extra weight went to my ass, if it did I'd never stop
eating, I would have a great built in cushion, but different strokes
for different folks!
One thing that really stuck with me from Tom's book was that every
food you consume has an impact, it is either feeding the fat or
feeding the muscle, and that there is no such thing as a neutral
food. All this is fine, and we all know whats going to happen if
you take in too many calories, but I am convinced that my gut looks
the way it does, partly due to the fact that the trunk muscles have
more or less collapsed, and are so weak. I am never going to have
a 6 pack or lookl like arnold schwarzenburger (lol), but I still
buy my Men's Workout and Muscle & Fitness and get lots of tips,
information and motivation from them. Everyone
has their own reasons but personally I look at them, and want to
give them a kick up the backside, and its not for a shallow reason
like not being able to look good in clothes, its because they have
an otherwise healthy and functional body which they are allowing
to go to rack and ruin. You only get one body, might as well make
it last! I don't want that to sound judgemental at all. I am the
worst comfort eater ever and have frequently gorged on dorito's
and sweets until I am sick. Another
big thing I have learned this week: If you have Friedreich's Ataxia,
DO NOT USE WEIGHTS! Your aim should be to maintain muscle elasticity
and suppleness, not to tighten them with weights. Use your own bodyweight
for resistance and buy an inexspensive rubber tubing to work your
muscles. Its funny that for a number of years I balked at the idea
of getting down on the ground like a dog and doing whatever weight
free exercise, but its got to be a priority to do something no matter
how small every day. I know I'm just delaying the inevitable, but
do it I must. If the muscles are going to turn to mush, so be it,
but at the very least I can make a concerted effort not to just
sit down and wait for that day. The muscles at the front of the leg are much stronger than the hamstrings, and thus there is not enough muscle strength to retract the leg.The thing about dealing with a progressive illness is just when you think you can't get any weaker or worse feeling, you do,. So as far as exercise or any health activity, I sometimes have the feeling that decline and weakness are inevitable, so I might just as well not bother doing anything and console myself with comfort eating. But I just can't do this! One of the other things I've been trying is carb cycling.
I figure there's no point exercising furiously and working up a
sweat only to counter yourself by "rewarding" yourself with junk
Its like pissing in the wind! One of the psychological cues that
is worth knowing is the whole idea of visualization. Pick a part
of your body that you hate (with me its the belly) and the next
time you reach for that third chocolate or biscuit, put that mental
fat ugly picture to the front of your mind, and I guarantee that
craving will go. All this from a person who has been known to drop
a chocolate or biscuit, only to pick it up and eat it. We all know
ultimately what to do, noone can plead ignorance in this day and
age with all the books, articles and infomercials, but we don't
make the right choices for whatever plethora of reasons! Thankfully my shoulder is more or less fully healed and I want to include a link to an exercise which I could feel from the very first go, strengthening my trunk. I guess I had become complacent, thinking that it was all just inevitable that my trunk muscles were vaporising. The loss of independance is a very hard pill to swallow, and I was becoming so unstable that even a sneeze might topple me out of the chair, or something as small as reaching out for the phone in work was becoming an issue. If you can hold yourself upright it means you have strong trunk muscles, if all you can see when you look down is belly, it just means that those same strong muscles are covered by some stubborn layers of fat. It was the small things that I missed, reaching out to grasp something, and the fear that unless I was securely anchored in the chair, that I could topple out. This was a definate contributory factor in the whole car debacle. Increasingly I found right turns more and more difficult. Anything that caused me to put the trunk muscles to use was problematic, be it driving or even leaning across a keyboard to type. Monday 20/8/06 .For
the last 2 weeks, my handwriting has been dismal, but yesterday,
without much forethought, I did some wrist/grip exercises and today,
I was very pleasantly surprised to see that I could actually read
my own writing. Plus I was able to grip things and open bottles
etc much easier. Just get a bag, weighed down with books or whatever,
and do a circular or lasoo motion. It works and if it helps your
independance, and makes you less reliant on the help of others,
forget how you look! Honestly last week , I had to fill out a bank
form, and I had to phone them later to see if they could decipher
it. Come to think of it, today was the first day in ages in work,
where I didn't drop anything. Am drinking water instead of diet
coke (have been addicted to diet coke since I was 14, and at my
worst was guzzling 2 litres a day) but cant say the big belly is
going down ( am trying to trim down a bit in preparation for my
holiday to cape town next month), |
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