My Physio

I agree with Jonas, if you have pain when you exercise this is not good, even for body builders. Discomfort is normal, but stop before the pain.
Pain is your body telling you something is wrong. It is a good thing to be able to experience pain. Some people are born with a condition that causes them to not experience pain. They can put their hand on a hot burner and not feel it. Imagine! Not good !

However, I think it is normal for people with ataxia to feel completely exhausted when and after exercising. It requires us much more energy as we are constantly fighting for balance. I used to play tennis, run, Kayak, now I feel like a rag after 15 minutes of walking.

Fran the man, don’t give up exercising. You need to stay in the best possible shape. This ill help you in the long run.

It is great you can run with your ataxia. I used to run when I was younger, go hiking in the mountains etc, you know how it goes. You name it I did it or tried it. But all that is gone now. Going down town to the shops is like hiking up that hill. My legs feel every bit of it. Put it like this, I went to climb over a wall the other day. I tried and tried but my legs would not respond to what I wanted them to do. I can live with the pain, I have a strong threshold for pain(or whatever they call it) but I want to do things like I used to, but we all know that's not going to happen. Keep running as long as you can. God bless. Fran

Lori said:

That is great that you can run. A lot of us cant. But I don't think it is suppose to hurt. Not for ataxia.



neta said:

I think it's supposed to hurt. No pain, no gain. Maybe reward yourself by taking a cab/car home. I run for a 1/2 hour a day and the last few minutes are super-hell but I imagine that I am running for the gold in the Olympics (visual imagery) and my husband and brother are cheering me on and its now or never.

Hi Fran, I can not run. Not even close to it. Im like you.

Lori

Fran the man said:

It is great you can run with your ataxia. I used to run when I was younger, go hiking in the mountains etc, you know how it goes. You name it I did it or tried it. But all that is gone now. Going down town to the shops is like hiking up that hill. My legs feel every bit of it. Put it like this, I went to climb over a wall the other day. I tried and tried but my legs would not respond to what I wanted them to do. I can live with the pain, I have a strong threshold for pain(or whatever they call it) but I want to do things like I used to, but we all know that's not going to happen. Keep running as long as you can. God bless. Fran

Lori said:

That is great that you can run. A lot of us cant. But I don't think it is suppose to hurt. Not for ataxia.



neta said:

I think it's supposed to hurt. No pain, no gain. Maybe reward yourself by taking a cab/car home. I run for a 1/2 hour a day and the last few minutes are super-hell but I imagine that I am running for the gold in the Olympics (visual imagery) and my husband and brother are cheering me on and its now or never.

For your info, Arnicare, made by the Boiron Laboratories, is an excellent homeopathic product, but it can be pricey. Check your local pharmacy for their own store brand of the same product. Make sure it contains the same amount of the active ingredient which is Arnica Montana. This can save you a lot of money.
It is also very good to prevent bruises after you fall or bang yourself on a piece of furniture, or whatever… But do not put it on an open wound.

I agree that you can strengthen muscles and retrain the brain but it does take a lot of motivation and hard work.

I also agree that a stick or cane will help with balance after exercise but two sticks/canes would be preferable.

Stick/canes help with balance and posture also alert others to the fact that you have medical problem and not drunk.

Patsy

And also, you can whack people on the head with your stick/cane, if they bother you… :slight_smile:

My physio tried me with two walking sticks instead of one. I made it 5 feet and she had to grab me before I fell. My co-ordination just went, and my eyes started spinning in my head. They recommend I use a walker/stroller but I will not use them.

Patsy said:

I agree that you can strengthen muscles and retrain the brain but it does take a lot of motivation and hard work.

I also agree that a stick or cane will help with balance after exercise but two sticks/canes would be preferable.

Stick/canes help with balance and posture also alert others to the fact that you have medical problem and not drunk.

Patsy

Why not ?

I went to a PT a few years ago now. I was sent to one to show me how to walk with a cane. Very soon into our session the PT noticed I hated using one and couldn't walk well. So she asked me do I want to try to rebuild what I lost. After I said yes she tossed away my cane and preceded to give me drills. She made up a obstacle course for me. She put a belt around my waist to make sure she'd catch me if I fell (first she showed me the right way to fall if I did so I wouldn't break anything). She had soft medium and hard surfaces for me to walk on.I did this each time I went there. I didn't do all the exercises right away I had to work up to be able to do them. So after that I had to work on my balance with a disk around 1/2 ball for 15-30 min working up to 45 mins. I then had to sit on a big ball and do leg lifts, arm lifts etc. Then we did floor exercises: hip openers (laying on the back, arms stretched out on sides, hip w leg over to one side along with head looking the opposite way trying to keep head flat on ground so it's a neck stretch also). Then I'd get on a treadmill started at 5mins and increased each time with speed and level. Then we did band stretches with my legs then arms, at first with my own body then with the door. She noted my progress. We did this 3X week starting slow and then building up with time 1 1/2-2 1/2 hours per day. She showed me how to use the Wii Fit Plus exercises I could do at home in-between time.

Gradually I did get allot stronger. Yes, it was way hard but anything good doesn't come easy.

I was told since I never exercised before I was diagnosed (younger years) that ok, that was my first 1/2 of my life. Now the rest will be different, I'll have to move/exercise more even if I don't want to or feel like it. Let my head rule not my feelings about it.

I was told to work on my core to maintain the strength that I had AND that I could rebuild Neuron's in my brain, And that I could build muscle (to a point).

I just worked with Dr Tom Clouse. He has ataxia also. He lives what every one has to face. He has wonderful idea's that work if you push yourself to do things. I've also seen him get people to get out of their wheel chairs and take a few steps. Look around at his website. He has a book coming out around Christmas I think. I'm jazzed about getting one! He has helped me overcome my FEAR which was more limiting than I gave it credit.

Check out his website and just try to prove his thoughts wrong after you try them! They have made a huge difference in not only my ataxia, but other's too that I know. The trick is there is no magic pill for this ataxia I'm sorry to say. But no matter what level anyone is at there is help. Yes it takes regular work. Yes it can put you out of commission for a few days at first it did for me too, but that got less and less too as I got stronger. http://www.walkingwithataxia.com/ Click on the guy upper left corner to watch a video.

I was let go after a few weeks because I was able to carry a baby up 28 stairs without holding on. Before PT let me tell ya I couldn't walk up those stairs without holding on just by myself let alone hold a cup. So PT does work. It got me started on my journey. I still don't like to exercise but it helps me function much better than not doing anything. Yes I tend to get lazy and think I'll skip today, but if I do that goes into more than one day and I notice little symptom's come back. So the friend that I partnered with working with Dr. Tom Clouse and I check in and make one another accountable and help one another push our limit just a little further each week to do just a tiny bit more. When my body gets tired I do just a few more of what ever and then stop. My body tells me when I crossed that line that next day. But doing just a little bit I don't really notice it too much.

I go to physical therapy two days each week for an hour each time. I'm tired after, but want to maintain what I have and improve my balance, etc. I attend a center that specializes in neuromuscular diseases, so they know how to deal with ataxia. I also exercise at home for strength and balance, and do the exercises/stretches they teach me. Physical therapy isn't easy, but nothing worth-while is, right? ;o)

To be honest, I think if I start using one of them, that's it, I'm finished. I don't want to rely on a stroller to get around. Like I said to my physio "My mother is 82 years old and uses a stroller to get around, if she sees me with one she'll think it's hers and start fighting me for it." If I use a stroller I will feel old, I know other young people use them but it's stuck in my head. I can still do a lot of every day things but boy do my legs feel fatigued after them, even simple household chores.But no, I won't use a stroller till I'm at least 70, if I last that long.I am thinking about a scooter to get me to the shopping center. Then I would walk around the shops and then drive back home again. I think that would take some pressure off my legs. Thanks Cicina

Cicina said:

Why not ?

Hi Cicina!

That's what I like to think too! Mentally, I do it all the time!

Cicina said:

And also, you can whack people on the head with your stick/cane, if they bother you.... :-)

Hi Beryl, I have a good mentality, It's just my legs and arms are on a different wave length I actually woke up this morning and both my arms were rigid and numb. I had to shake them to get the blood flowing again and then came the pins and needles, right on cue.

Beryl Park said:

Hi Cicina!

That's what I like to think too! Mentally, I do it all the time!

Cicina said:

And also, you can whack people on the head with your stick/cane, if they bother you.... :-)

Hi F-t-m!

I often have pins and needles in my hands when I wake, usually I'm on my side or my back,

so this hasn't happened because I've lain on them and circulation was cut off. It must be

disconcerting for you to say the least to have the sensation you describe.

I have to confess to never having been an active person, so far as sports/outdoor activities

are concerned. But, I can't do the things I used to enjoy either, so I can empathise with you.

I don't need a rollater yet, I'm just thinking that if/when that time comes I'll probably just be

glad there is something to still keep me mobile on my own feet and fairly independant.

You can strengthen your legs. Stand or walk everyday just a little longer.

Fran the man said:

To be honest, I think if I start using one of them, that's it, I'm finished. I don't want to rely on a stroller to get around. Like I said to my physio "My mother is 82 years old and uses a stroller to get around, if she sees me with one she'll think it's hers and start fighting me for it." If I use a stroller I will feel old, I know other young people use them but it's stuck in my head. I can still do a lot of every day things but boy do my legs feel fatigued after them, even simple household chores.But no, I won't use a stroller till I'm at least 70, if I last that long.I am thinking about a scooter to get me to the shopping center. Then I would walk around the shops and then drive back home again. I think that would take some pressure off my legs. Thanks Cicina

Cicina said:

Why not ?

Hi Beryl,
Whacking people mentally does give your neurons a workout :slight_smile: so, good for you!

Hello Fran the man
I have always been very athletic and was raised by athletic parents, so to find myself on the floor, unable to stand up on my own and feeling like I had been drinking all night one early morning a year ago at the age of 68 was quite surprising and frustrating. A stroke, which I call my stroke of bad luck, had zapped my center of balance located in the cerebellum and my left leg and arm were unwilling to follow directions and were moving all over the place. So after one week in intensive care and two as an inpatient in a reeducation center, I went home in a wheelchair. But the wheelchair was quite unpractical around the furniture and I wanted to walk anyway. So we purchased a rollator (walker on wheels with a sit if you get tired) but after a few weeks and more in outpatient therapy, I was able to put the rollator in a closet and get on my two feet. My therapist did not recommend walking with a cane, except for security when I am alone or on uneven terrain.
I think that you need to work on your balance. The Bosu ball as Jeannie said is a great tool for that or the rocker ball as Lori described it in one of her posts.
It is not easy, but eventually you get the hang of it. Like Jeannie, my therapist always held me with a belt around my waist . This takes away the fear of falling and you dare more and gain more confidence.

One of the therapists told me. Let’s be realistic. You are brain damaged and now functioning with a new brain which you have to train. And this is when I realized that I was like a baby, trying to stand up and falling back on her behind, then trying again and putting one foot in front of the other. So I thought if babies can do it, so can I. I did it once as a baby(don’t remember how hard it must have been :slight_smile: and I would do it again.
From what I was told and what I have read, cerebellar strokes are very bad and take longer than other strokes to heal, because the tissues in the cerebellum are very dense and it is harder for neurons to find new pathways… So, being a very realistic person, I have come to terms with the fact that I probably will never run again, but it is what it is. And should I ever be able to run , I might be so old then that I probably will not want to do it! That is my way of dealing with this situation…

Hang in there and don’t give up! You’re the man after all :wink: and we are all watching you and rooting for you.
Take care and remember that “it is better to feel old with a walker than sitting in a wheelchair if you can avoid it” ( this an ancient Chinese proverb I just made up. Hee! Hee! )

I am always going. Walking everywhere I can. I'm always doing jobs around the house, painting etc, I even put up a half shed today to keep my firewood dry. I'm always pushing myself. I will keep going as long as I can stand. Thanks

neta said:

You can strengthen your legs. Stand or walk everyday just a little longer.

Fran the man said:

To be honest, I think if I start using one of them, that's it, I'm finished. I don't want to rely on a stroller to get around. Like I said to my physio "My mother is 82 years old and uses a stroller to get around, if she sees me with one she'll think it's hers and start fighting me for it." If I use a stroller I will feel old, I know other young people use them but it's stuck in my head. I can still do a lot of every day things but boy do my legs feel fatigued after them, even simple household chores.But no, I won't use a stroller till I'm at least 70, if I last that long.I am thinking about a scooter to get me to the shopping center. Then I would walk around the shops and then drive back home again. I think that would take some pressure off my legs. Thanks Cicina

Cicina said:

Why not ?

Wonderful! Keep going!

2 links for everyone...
http://fightataxia.org/Tips.html
http://fightataxia.org/Common_Sense.html

Great tips! Thanks Jonas.