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olly

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on thursday i started my intensive physio therapy.
i have sarah my usual occupational pt who has been coming to my home for 2yrs.
but someone else is going to do the extensive physio twice a week for 6wks now so its not too much.
i have a set of 10 exercises to do,some in parts(starting at A and progressing to C)
some are for balance,others for my weak torso,hip girdle and legs.

sarah,the new pt and a 17yr old male student turned up on thursday at 9am.
after a quick chat we got started,the new pt going through the exercises while sarah explained everything to the student.
when we got to the floor exercises everyone ended up on the floor doing them while i looked on bemused.
i will share a few of them with you for balance and legs.

a few hours after i was so fatigued i had to have a lay down for a couple of hours.
when i woke i was crippled with spasms and cramp.
my left lower leg and foot has not had any cramp in it for a week or two but i have had cramp in them since thursday.
there are a few exercises i am going to ask not to do,i said to my son i have hypotonia/loss of contraction in my left lower leg and my arch has gone in that foot. no amount of exercise can cure loss of contraction,it just makes my muscle there more tired.

so the next sessions are monday and wednesday............yipeeeeeeee.
i will let you know my progression and any tips i pick up.
here are a few exercises for you.

1)stand straight holding a 1-2kg weight in your hand.(tin of canned food)
lift the weight with your arm straight forwards,then lift your knee on the same side of your body. keep your balance. repeat on other side.
(i can do this for 3seconds,very wobbly)

2)stand and try and walk on your toes.
(this is very hard so don't do it if your balance is really bad. i can do it for 3steps but the pt had to hold me. this is one i don't want to do as i think it set of the cramping in my left foot and calf)

3)stand and walk on your heels.
(same as above)

4)sit on a chair. pull your toes up. tighten your thigh muscle and straighten your knee. hold approx 5 seconds and slowly relax your leg. repeat on other leg.
(i can do this better with my right leg,my left leg is weaker and starts shaking)

when you have mastered these i will give you the harder ones lol.
please be carefull,i don't want anyone sueing me.
i will let you know how this week goes.

take good care
caroline:-D
 

elliekusa

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I applaud you for your exercise efforts. I went to pt for six sessions and basically had to quit. I am a former triathlete, so I LOVE exercise. However, I became VERY weak and ATAXIC (I call it the bobble head syndrome). I am not talking about HARD exercise....just basic stuff. So, until my diagnosis is figured out - one way or the other- my doctors want me to limit my exercise and conserve energy. Pt was not helpful for me since it made me MUCH worse. Since I stopped working out hard at the gym....I feel better. I am still weak and have muscle atrophy, but I can function better since I am not completely wiped out.

I do swim several times a week but I go easy since I still need the energy to get out of the pool and drive home. :)

Take Care,

Ellie
 

CindyM

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My PT guy said I was to stop as the more I did, the weaker I became. This is hard for some of my friends and family to understand. They say, "If you are weak, you must need exercise." But I went from doing arm curls with 10 pound weights down to not being able to lift two pounds, so that is good enough for me!
 

olly

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i had to have a lay down for a few hours after ,1/2hr exercise was too much(though taking out all the stopping and positioning i probably did 10minutes)
i still have not recovered,so to my delight the pt called today and had to cancel as her little girl was poorly.
so i'm off the hook till wednesday........yipeeeeee.
take care.
caroline:)
 

sral

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Cindy,

Although it is yet not clear whether exercise is good or not, I think that strenght training, i.e. lifting weights, is not recommended. Range of motion exercises are okay. I think they say it's best not to put extra strain on the muscles through exertion exercises. I'm definitely no expert - I just thought I'd share what I thought I knew.
 

olly

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hi cindy/sral

let me clarify,my physio is no way strenuous exercise or i would not be able to do it.
sarah my usual pt has been coming to my home every 2wks for 2yrs nearly.
my neuro mentioned going to the neuro rehab for 2wks but did not want to stay in hospital,so that is why she has arranged another pt called kirsty to take over for 6wks to do what they would do in the neuro rehab centre.
my pt sarah says the light exercise it to keep me going as long as possible and keep me out of a wheelchair.
she knows my limitations with the spasms,fatigue,stiffness and muscle weakness.
there are some exercises in my new physio workout i am going to have to stop due to them causing severe cramping in my left foot and calf,i know no amount of exercise can help hypotonia/loss of contraction,the damage is done.
like you cindy i was a very good amateur weight lifter,very strong muscles. also a competative runner doing cross country running. a 5mile run wuold be nothing.
but now my muscles have shriveled up and can somedays just make it down to my local store at the end of the street but struggle to get back home.
i was a good swimmer so tried to do some last summer,as soon as i took as stroke from my waist down just flopped,i was so gutted and could not believe hoe weak i really am.
i think a little light pt to keep the limbs moving is good for asl/pls,just to keep the body going that bit longer .
take good care.
caroline:)
.
 

awieleba

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olly, I have nothing to say but I just love your personality!

How long have you been dealing with all this?

april
 

sral

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Olly/Caroline,

I'm totally in agreement with you that a little light range of motion exercise is good for als/pls. However, my note was in reference to weight lifting. It is my understanding that exercises of this type MAY be harmful.

Wishing you luck with your PT. I'm hoping to get someone come for my mom too.
 

olly

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sral

i do know you can get home pt in the usa.
i know some with pls who have pt,also my friend with advanced bulbar onset als(now in all 4limbs and his neck has weakened)has just started pt last week. he loves it:lol:
ask your mums gp or neuro about it,a little bit when she can will help with the symptoms.


april

i have had umn signs/symptoms for 9yrs now,but about 18mths-2yrs ago found i had possible lmn involvement in my left lower leg.
it has loss of contraction/hypotonia and over a period of time i have developed slight atrophy in my left foot/ankle and now my arch has collapsed. this week i have realised i have now slight atrophy in that calf,just over 1/2inch and the same in my foot which has always been the bigger one.
i am not worried just yet and will just keep an eye on them for a while and see if the atrophy gets worse.

take good care everyone.
caroline
 

sral

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Caroline,

It sounds that even if there is lower motor neuron progression, it is moving extremely slow. In the past 2 years the lower has affected only your lower left limb.

By the way, I've been google the internet in search of what calf atrophy looks like and have come up empty. What exactly does calf atrophy look like?

A few months back I thought my mom had calf atrophy but I'm starting to doubt that that's what it is. It appears to be more just below the knee from the behind and inner part. Just recently they've launched a tylenol arthritis and in it they show signs of weakend knees from arthritis and what my mom has looks alot like that (but less severe). It was neat to see because I had been searching for months and then finally a commercial helped me out. My mom has complained about knee issues from 6 months after symptom onset. She kept saying her knees were weak but the neuros discounted it because it did not show up in the strength tests or EMG. So the signs I'm seeing may very well be knee weakness rather than calf atrophy.
 

olly

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sral

in my left lower leg around the middle/fattest part is were there is inch loss,it is slightly thinner than my right lower leg as it has lost some curve on the inner side.
hope that helps.
give my love to your mum.
take care.
caroline:)
 
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