The most important thing I would like other people with FA to know, is that certainly when it comes to muscles the old adage “use it or lose it” is true.
I look back now and I am so annoyed that it didn’t compute with me, that if you don’t use the muscles, they are just going to atrophy and wither away.
But of course, these were the pre internet days and I was stuck in the middle of the countryside, so I am not going to beat myself up too much about that..
I would just implore people with FA, to make that effort to keep some strength in their legs. KEEP THE DAY THAT YOU ARE RELIANT ON HOISTS AWAY, FOR AS LONG AS POSSIBLE!
Be as creative as you can! Look at what other able bodied people are doing in the gym. Can you adapt that movement?, look at Youtube and see what exercises you may be able to customise. It’s really an invaluable resource.
Even if you buy a cheap pair of resistant bands. I know that with me, its very much one step forward and two steps back. You make some gains, and then you get sick, losing any gains that you have fought so hard to achieve.
You more than likely will not be able do everything that they can, but try and customise the exercise to suit your own abilities. Hopefully it will pay dividends in the long run!
(Update Friday,2/8/13) I haven’t been able to update this in ages. So, where am I now? Thankfully, I’m still going to the gym and using it as a tool to fight my decaying body. Sometimes I feel the benefits, my handwriting has come back, I have more muscle to cushion a fall etc.
But I am still slipping out of the chair, all because of various muscle imbalances.My diet is still far from clean and I know I am completely sabotaging my efforts in the gym, being such a hopeless chocoholic!
(Update Monday 20-02-17): I think a combination of getting older and developing, insulin dependent diabetes at 24, has largely taken care of my sweet tooth.
I honestly don’t know how my pancreas survived for as long as it did! In supermarkets when everyone else would be coming out with practical things like toilet roll or cleaning detergents, I would be the one coming out weighed down with jellies and sweets.
What’s the point of working so hard in the gym if your going to undo it so easily.
So now my nieces take care good care of my sweet drawer, much to their mothers annoyance.
My pelvis is still bad. One step forward, two steps back seems to be the name of my particular game. I wouldn’t like to see what state I’d be in without those gym visits though!
Here are some questions I recently got:
1/You always say that your gym workout at Naas helps you with transfers. May you tell me a good routine you did when you were 28 or now 36 (text or video).
Eric: I had never set foot in a gym before Naas opened 2/3 years ago. I used to have some equipment including weights at home, but how I didn’t do a serious injury is beyond me.
I did rip my rotator cuff once, which was complete agony. Not only can you get professional advice from the trainers, but it is motivational to see everyone else.
The one thing I know now, is that the people with great bodies work bloody hard to get and maintain them. In the gym they have a hand cycle,, and I usually start off on that.
I know they say its impossible to burn fat and build muscle at the same time, but I also do a lot of bicep work and pull ups on the smith machine. I am very unstable, so am now doing weighted side bends to strengthen the obliques (Update 3/2/17: more or less beyond my ability now). Its horrible being so weak and unstable.. I’ve even been known to fall off the loo! No wonder people assume I’m intellectually challenged!
When your core disintegrates you really are a baby once more. Thankfully it was a gradual process. Even small things like typing on the keyboard, became an issue, I would almost have to hold onto the table to keep upright.
For the past few years, I have a bucket seat backrest on the wheelchair ,otherwise I would be sprawled on the floor. Dressing, showering, holding a cup or cutlery, revolves around having a strongish core, I now know!
I found myself getting annoyed with health officials, who were almost dismissive of the hours I spent going to the gym. It is certainly not about becoming body beautiful.
It is purely about getting back, or holding onto the strength to be able to lift that cup or stay in your chair in cases where you don’t have your belted protection.
I got a very good email recently which said that “abs are made in the kitchen” and that makes perfect sense to me. I am a lot stricter with what I eat. When I heard them say on “The Last 10lb Bootcamp” that there are 10 calories per crisp and I am shovelling in pringles and dorito’ 5 at a time, it has really made me do a rethink.
I still eat too much of the wrong stuff, jellies and marshmallows. But vanity msy be my saviour. I am NOT going to become an obese wheeler with bad teeth. NO WAY!
Why don’t you emphasize swimming? I think we should do it at least 3 times per week?
When (at which age) did you develop sclerosis? heart disease? diabetes?
Eric: At this stage I need more or less full assistance and that brings its own challenges. I thought I had found one who waited until we were in the pool to tell me he couldn’t swim.
Usually they put one of the inflatable tyres around me and bring me down to the deep end where I can stretch out. It feels amazing and I don’t have to worry about stubbing my feet. The gym in naas has a hoist, but even though
I am comfortable enough in the water, when you have a big oompa loompa belly, it has to be quiet before you even think of striping off.
I developed slight scoliosis from early teens even though its not as pronounced as others. With the crap core muscles, sometimes I would be to all one side or very slouched forward , The wheelchair I was in until recently had me in a terrible sitting position, with the back all tilted back and my legs would keep shooting out. Again back exercises in the gym have helped the back press and lat pulldowns and deadlifts. Sometimes I do exercises for my forearms, as I have the grip of a little old lady. At times over the years my fingers have tried to twist over each other, but I won’t allow them to become as deformed as my feet, so I forcefully stretch them out.
I developed type 1 diabetes at 24. In some ways I am glad to have diabetes as it forces yo0u to look after your diet and sugar intake. I dread to think what size I”d be otherwise. No heart trouble or blood pressure trouble yet. I do get tired easily and my GP wants me to take preventive tables but I won’t take them. Insulin is more than enough!
Why don’t you use a stand frame? (If you have room get a tilt bed, or EasyStand 3000 euro). or like Kate’s power-chair. I don’t stand either, but i think it should be useful. Besides you and kKte, do you know other informative sites? last question, when did you write the ‘Exercise’ page, because I want to compare m physical disability to yours?
Eric: I remember I got a walking frame for a trial, before the wheelchair and hated it. I was a 13 year old, wrestling with delusions of normality and yet here I was with a granny frame. The shame, the embarrassment…the constant falls. It was not for me!
You need balance and coordination to pick that jollopy up and position it. It was more dangerous than helpful.
I have an electric bed that tilts. Can’t say I’ve ever had a good night’s sleep in it though.
I will never get a power chair. Now I have assistance, but I would not get one even when I was pushing myself at 2mph with terrible posture and sticking out legs. If I lose the strength in my arms, I’d be a terrible vegeyable. They are like mini tanks anyway. You can’tt easily get around shiops or forget about folding it up and putting it in the boot. I wrote the exercise page about 3 years ago.
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.
So the big issue that I am trying to address are the trunk/core muscles. In terms of functionality this is one of the key areas for me. Believe me, you will know it when your trunk becomes so weak, that you can’t even situp in bed (dressing is even worse), so of late this is a key area for me to focus my efforts on.
I read a very good page recently, on the crucial role of breathing for core stability (which I have to admit I had never even thought about, and can be done anytime anywhere).
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).
Reading this article has caused me to retrieve my 6 second ab machine from the cupboard and use it with renewed vigour.I always start off with the best of intentions, but my enthusiasm usually wanes. However anything that can help me with trunk stability and helps keep you less dependent on the help of others is certainly worth a shot!
Especially during the past few years, I am making more of an effort to exercise and watch what I eat. I would urge anyone with Friedreich’s Ataxia now to start some exercise programme.
I used to balk at the idea of getting on the ground to do exercise. I always had relatively good strength in my legs, well enough to make safe transfers with half my bodyweight on the chair, and the other half on the legs.
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 came across this website some time ago that is inspirational. Now I know he doesn’t have Friedreich’s Ataxia, but its an illustration of mind over matter, he is a wheelchair using bodybuilder called Colt Wynn.
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 dumbbells, barbells, ab chair, ankle weights and more from those infomercials you see on late night tv.
A great and inexpensive 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.
Its 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.
Its ultimately not about how hard you exercise, but rather how often you eat the wrong food. I have always had a terribly sweet tooth, which diabetes has softened somewhat.I saw some averts on the net a while ago called Burn the fat, feed the muscle by Tom Venuto.
Its an e book and it took me ages to download it some months ago when the damn net connection kept going. Basically he is a bodybuilder with regular 4-6% bodyfat (when I measure mine first it was in the forties!)
I really like his writing style, and as he says your goal should be to lose bodyfat not just water based weight.I came across an interesting website recently about fat gain and insulin resistance.
I’m not sure if its just another gimmicky site trying to make a fortune from desperate 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!
Certainly while I was walking, and for a couple of years after the chair, I could eat whatever and still be thin. After that the metabolism slowed right down and the calories in versus calories out law was tipped in favour of me having a big gut (all my weight goes to my gut and face).
I now realise that the less active and mobile you are, the more strict you have to be with your diet. Sounds like common sense? Well that’s me all over, I can’t see something which is plainly staring me in the face!
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 what’s 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 look 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.
Of course, most of those exercises are completely out but some can be adapted and personalized.
I see any form of exercise now as an investment in my own body. I know Dr Phil says “you’re fat, cause you wanna be”, I can see the shock value, but if you wanted anything it would be to eat whatever you liked and still look great in the buff.
“You’re fat cause you allow it”, that I’ll buy! Many people I know have been to Florida, and are shocked by the amount of people that are practically disabled by their obesity.
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 judgmental at all. I am the worst comfort eater ever and have frequently gorged on Doritos’s and sweets, until I am sick.
I know there are many different reasons why people overeat, but ultimately you are in control of your body and not vice versa. Like a lot of things, it is easier to talk, rather than implement these exercises and be disciplined enough to make the effort.
I wish I could get some muscle into my legs, and although I have never been so strong in the upper body, the sight of me doing some weighted exercise must be comical. When your balance is crap, for example I do a bicep curl with the other hand holding onto something for stability.
I have never been to a gym in my life,and when you can’t even sit in an ordinary chair, its easy to see why.
For the past number of months, I’ve given up on my feet positioning and just allowed them to plop anywhere ( usually inverted and over-pronounced to the point of shooting pain on the balls of my feet).
I met with an occupational therapist on Wednesday and she told me that in her opinion, the situation was not beyond recovery and that I should try to not have the ball of the foot on the footrest and try to keep the heel down.
It DOES make a big difference, I found that I could get pants on easier using the feet and pelvis to raise up into some awkward imitation of a bridge position.
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 inexpensive 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.
I have to admit that I must be one of those highly susceptible people who sees or reads a glowing advert about a particular product, then hurries out to buy it.
Sometimes, I’m like that every single week. I read something good about a particular supplement or vitamin, then on Saturday go to my nearest health store and buy it.
I really do think a lot of these pills and potions have a placebo effect only, and when you feel desperate, you will clutch at any straw. At the moment I am taking CoEnzymeQ10 and various antioxidant green teas (but I am off work sick at the moment with flu, so draw your own conclusions!)
One of the areas which I have long neglected, and which has now gone to mush, is the back. If you are sitting in a chair all day, on your tailbone instead of your pelvis, of course you are going to become very floppy and weak. I found this website about the importance of good posture. It is useful, in that it provides info and products to help your posture.
I have re-evaluated my whole attitude and approach to weights. It is important to try to maintain and build muscle, which is metabolically active tissue.So, I’m opting now for less weight and more reps.
If it helps a basic thing like getting out of the bath safely, then it sure is worth it.I suppose I am terrified of lifting/using too much weight, and injuring my arms.
What a state I’d be in then! My body is ridiculously catabolic. It seems if I have the flu, stop exercising for whatever reason, that my hard fought for muscle is depleted in a shot, and I am left as weak as a kitten.
I am going to try the electrical stimulation contraption ( like the slendertone device) on my legs this weekend, to see if it will help put back some strength. I’ll keep you informed, also on my shopping list is a good digital camera. This site is a bit too text heavy, and badly needs some images.
I have long wondered why my pushing ability in the chair has been so poor. Sometimes I swear I would lose a race with an old geriatric.
So, I am using my own body resistance and doing some tried and tested push ups. Even though I have only started doing them, there are enough variations on the exercise to hit all the upper body muscles. They are also supposed to help with balance, posture and core strength, which are all areas I sorely need to work on!
I am very thankful for the internet, and the benefits of living in an information age. I have just read excellent pages on the importance of strong hamstrings as a means of stabilising the pelvis and lower back.
If you can crawl forward, crawling backwards is going to target the hamstrings. My nemesis of the last couple of years, has been the fact that my right leg ( the strong leg) keeps kicking out.
Part of the function of the hamstring is to bend back the leg. My occupational therapist said the cause of the leg shooting out and absolutely refusing to stay on the footrest was due to a pronounced muscle imbalance.
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!
I am in agony with my right arm. It started in egypt when I fell backwards, and broke my fall with my arms.I must have pulled a muscle. It was bearable for a few weeks.
I think the sun helped during the day, and it only tended to seize up and hurt at bedtime. To use a wheelchair, and not to have much use of your right arm is just the pits. Indeed
There is nothing worse than to be in physical pain, day in day out.Of course I stupidly tried to exercise and do some light weight work. When I get recovered I am going to do more dumbell swings (WARNING: Do not swing your arm too far back while doing this exercise, as I think this may have been the culprit for my agonizing rotator cuff injury. Do not do it if you can’t get out of the chair, as the brakes get in the way, and your form will be crap, which stupidly I did) as a way of strengthening your core.
I only did a few of them but I felt them working. Believe me, you will know when your trunk goes, and it is just luck now if you can safely extend out to pick up the phone. Twisting, turning all these everyday normalities have also become a thing of envy for me.
I did’nt go into work on Friday, as my boss saw me wincing in pain and told me to go to the doctor.After sitting in a chair all day, its good to get out and do whatever exercises you can on the floor. I sleep in the weirdest positions, and have just read an article which points the finger at a correlation between poor bedtime posture an shouder/neck/arm pain.
Still in pain with my arm. Was up since 4am with intense pain. Its hard even sleeping, because normally I sleep on my right side. It tends to ease up during the day. I cant just not use my right arm so naturally its taking longer to heal.
Found a very good article, which hit home, about the connection between a person’s intake of vitamin c, and the ability to lose fat. This is definitely something I need to work on, as I certainly do not take in enough vitamin c, and I don’t want to buy yet another supplement, so I stocked up on dried fruit snacks from the health shop. I love apricots and pears anyway.
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 independence 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, knowing that unless I was securely anchored in the chair, that I could topple out. Anything that caused me to put the trunk muscles to use was problematic, be it driving or even leaning across a keyboard to type.
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 lasso 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).