Calories burned with Ataxia & Dystonia together?
 

Hi

Sorry its long but please read as I desperately need advice and am housebound so have no other way to get this info.

I have been diagnosed with Ataxic-Dystonic Quadriplegia in my forties. (now 42, F, 5ft 3 and half) My ataxia symptoms started in early 30's with just an ataxic gait and needing a walking stick but was needing wheelchair by 35. (18 months after onset) I put on loads of weight and then found ways to exercise and dropped from 16st to 11st 7.

Then I started getting involuntary movements which weren't part of the ataxia and after another brain scan they discovered it wasn't cerebellar ataxia as first thought as there had been no cerebellar degeneration but I was clearly having difficulties with messages between brains and muscles.

I was struggling to get used to my new body for a while and stopped exercising i went up to 12st 7. Once I got used to the involuntary movements and relaised I could burn more calories possibly, I tried to start exercising again which is difficult as I can only do a few from wii fit and even with half hour routine was only burning just over 100 calories. I'm unable to do any fast aerobic exercises due to lack of co-ordination in limbs.

So I saved and bought a passive trainer bike and now I can burn around 700 calories a day by 6 x 15 mins session a day.

I'm also on a calorie count forum and someone on there said I'm not losing weight cos I'm eating too little and burning too much, they thought I may burn up to extra 500 calories a day if it was similar to parkinsons.

However, I don't have a constant tremor. I get intention tremor trying to do some things ie write, fasten buttons, laces etc but mainly arms are just a jerky motion when trying to do voluntary actions, I also get involuntary stiffening of arms and legs but only lasts short time and more or less constant flexing of fingers/hands at rest (similar to a mild-moderate athetoid cp?).

I'm wondering, without doing exercise how many extra calories a day I maybe burning from the involuntary movements?

My local GP/community nurses have never seen this condition so haven't a clue and I'm in a small village and virtually housebound (no transport, very expensive to get powerchair into town to get anywhere). Only stuff online about calories tends to relate to huntingdons or parkinsons...

Any ideas please??? I don't want to be accidentally sending body into starvation mode by over exercising if I am actually burning up to 500 cals a day in involuntary movements, but deperately need to lose more weight as for my height I am considered obese (now 12st) and I have chronic lower back pain as all my weight is around my middle/abdomen so can only sit up for a few hours at a time before needing to lie down again.

Thanks

Kati

G'day Kati,

Welcome to the Neurotalk Support Groups. Lots of wonderful people here.

I'm so sorry but I don't really have any specific knowledge to give you regarding your questions.

I do know that over many years as part of the Tourette's Syndrome community, I have had conversations with others regarding how constant ticcing can cause a person to be continually warm/hot. I guess that means the body is working overtime. How that expression of energy is actually measured is beyond me. It would be different for everyone I would think

I just did a search at WeMove for more help/ideas to post for you, but I think you may have found that site already. http://www.wemove.org/

talk later,
Lara

Hi Lara

Yes I already know of We Move, I only found your site today and wondered if anyone on here knew?

Does anyone know in general how many calories someone would burn with involuntary movements or 'fidgeting' all day?

I really don't think mine are as high as 500 calories as they aren't rapid chorea type movements... but very slow, jerky & uncoordinated maybe similar to someone who had mild athetoid cp.. if anyone on here has that? (or a child with it).

Thinking maybe 200-300cals a day so could maybe miss out one half hour session on bike ?

I've done just over 700 cals so far today on wii fit and hour on bike.. i think guidelines are no more than a 500-800 calories deficit to lose weight 1-2 lbs a week, but if I'm def burning 200 or 300cals just in involuntary movements I obviously need to reduce my workout?

Any ideas who might know this info?

Thanks

Kati

Kati,
Is there a Physical Therapist or Dietitian in your village or one close by you there?

Only other thing I can think of is checking Huntington's Disease or Parkinson's Disease sites. We have a PD forum here. Parkinson's Disease Forum
Also have Movement Disorders Forum It's pretty quiet though.

There is also a Cerebral Palsy Forum. It's very quiet, but you could post and see if you get responses there.

Just curious though... if you're burning up so many calories with involuntary movements, why are you exercizing so much until you find out how to balance it all out? I'd take it a bit easier for a little while until you know more.

all the best.

Well my movements are very slow so I was assuming I'm not losing weight as I was unable to burn off enough calories until I got the bike last weeks am now able to go on that anytime.

I really didn't consider I could be burning off so much from the movements alone, until someone recently mentioned it on a diet forum.

I haven't seen the Neuro physio since last year, she mentioned my movements maybe shaky cos I was trying to use arms and legs to balance myself in manual chair (which had no arms rests), she showed me some core muscle exercises and stretches which I have been doing and they have reduced the amount of stiffness I get and improved my trunk strength and sitting balance.

To be honest I wasn't aware of my weight then as I struggle to stand still on regular scales but this year I went for seating assessment for powerchair and they have special scales where you go on with chair and they take away weight of chair to work out your weight and it's since I saw what my weight was in notes that I started counted calories and trying to find more ways to exercise.
As I was so embarrassed it said it I was 12 st 7! When a about 2yrs ago at an hospital appointment I went on scales you sit on and I was 11 st 7.

So just trying to exercise it off now I have a way to move fast enough to burn calories! Also I read I should be between 8 and half and 10 and half stone for my height which also shocked me so my BMI is just under obese category at 29.9! :(

I'll see if anyone on CP board with athetoid CP knows roughly their calorie burn.

Thanks

Kati

Hi. I can't give you specifics either. I would think it would be better to get the exercise and increase your protein intake than to decrease your exercise. The main reason I say this is because of the back pain. Exercising should help that. If you find you're losing weight too quickly, you could always add more calories to your diet. My son has dystonia and is in constant movement. He eats 3 meals a day and takes supplemental shakes 4 times a day just to keep his current weight, which is very light for his age and height.

Hi

Thanks... Have they everntold you how many calories your son is burning roughly from involuntary movements or how many you are meant to be aiming for with the. 4 shakes and 3 meals?

I worked out from calorie count that an averGe woman my height and weight would burn 1700 calories which works out at 70/71 calories and hour.

Fidgeting is roughly about 30 for a mild fidget, someone mentioned that leg bouncing for an hour would be 120 cals... My movements aren't that vigorous so I've estimated about 100 cals an hour for me giving me 2,400, that's not including the exercise too but I'm trying to create a deficit at the minute so burning around 600-700 a day in exercise.

I've also been thinking about Ensure shakes or something as I think I'm going to struggle with eating that much!

At minute I've worked out if I get up early and straight in shower before muscles start stiffening then straight on floor for full body stretches I find it much easier to do my half hour or Wii fit and burn more calories, by time I'm getting tired I move to passive trainer bike which pedals for me but I still burn off more on that than I do from Wii fit. Around 160 cals in 15 min cycle. I do half an hour , two or three times a day on that.

I'm also managing to eat more breakfast to get some extra calories in at the beginning of tthe day! As I didn't usually bother with breakfast before,i'd getup later then by time I got back from walking my dog around the village (use old mobilityscooter or my powerchair) my stiffness level had kind of set in for the day so every exercise I was attempting to do on Wii fit was a huge effort. Iused to struggle to manage 2-3 sessions a week with rest days in-between but this last week I've managed an early morning session every day in a row! So I'm thrilled, the stiffness and pain hasn't been as bad the rest of the day either.

I'm hoping to keep it up but winter is a challenge as my stiffness and pain have always increased with temperatures dropping and energy severely decreased, didn't help I couldn't afford to have heating on much either so was usually frozen most of the day! I was completely housebound too with the snow last year 8" up my drive/pavements and estate road was frozen over..so couldn't get off estate with scooter.

I've budgeted for more heating this year, mainly first thing in morning so can manage to do exercise session at least once a day!

Kati

The 4 cans of Pediasure are about 1240 calories. Besides that, he eats about the same amount of food as my other kids eat.

I'm glad you're getting your exercise. I hope you're able to continue this winter.

Wow that will be a lot if they are typical kids snacking on stuff all day too as well as meals!

I know kids and teens need an higher calorie intake than adults anyway. At 42 and with an under active thyroid mine should be slower anyway. I have noticed a difference, I think I hav managed to boost my metabolism wit exercise as I get hotter now than I used to. I never sweated during a workout until recently.

I think my metabolism had slowed right down cos body had gone into starvation mode. I logged my usual food in a diary and was only getting about 1200-1400 calories. I manage about 1550 at certain times of month when naturally eat bit more and high calorie cravings like chocolate! But i'm still under according to the calorie counters even at sedentary level without any extra exercise.

I'm still waiting for my Ensure to arrive, looks like it will be next week as we had a bank holiday here.

Kati