so we got a treadmill...

[AKmom]

...a brand new one with all the fancy stuff on it I will never use. My hubby and I decided for our anniversary we had last week that we would buy it because I was needing to get some kind of walking in (its been really icy outside) and he needed to maintain his fitness as he is a soccer referee.

So today will be the 5th day of me using it. Yesterday I managed a whole 15 minutes at 2.5mph with an incline of 2.5 for about 2minutes of the time. Then I had to bring the incline down.

My problem is that I have successfully already made a permanent white streak on the belt from dragging my right leg. This is the leg that wears the ritchie brace to help with dropfoot. Yet I don't think its helping much since I cannot seem to get my leg to lift high enough off the ground for my foot to drop! The left leg starts to drag too after the first 5 minutes of walking. My whole body starts to go into its spastic state at about 8 to 10 minutes. I do take a baclofen about a half hour before starting. I stop whenever my legs feel like they will buckle.

Now am I doing something good or bad? I definately need to keep the muscle strength that I have...or improve it. The first time on I did a 1.5 mph for 5 minutes before I had to get off. So there has been some endurance improvement plus speed has increased.

I am really wanting to be able to walk at ports during my two cruises that are scheduled for this coming year. Does anyone else here use a treadmill for conditioning or physical therapy?

 

[Alyoop]

Hey Joyce. You are doing the right thing, especially if you are stopping when your body screams stop. I was on my treadmill last week (first time in 8 months) and I was dragging my left foot after a couple of minutes and my Right foot after about 15 minutes. What I do is alweays hang on to the handles on the side. I can push down on them a bit when really tired and seem to clear my feet a little better.

The weakness in PLS is more like weakness from a stroke, so exercising sensibly will keep the less affected muscles aroung and about, stronger, Hope that makes sense.

I went to a really good talk recently on exercise in MS. It was once believed that excercise was bad and sufferes were told NOt to do it. The recent info is that excercise. decreases fatigue and depression, cause of all the good stuff that excercise releases.

Keep it up, but do so gently, sounds like you have that under control. You could keep it flat at first and don't incline it until you feel stronger, then you wont get tired so quickly.
I have proximal weaknes, except my Left leg, so I incline it a bit so as to work the Butt muscles. Going down and up a hill to feed my old retired horse does it for me as well.

Good luck
Aly

Ps Our whole country is in mourning today after a horrible coal mine tragedy. Its been an awful week, of hope turning into disaster after a second explosion Yesterday.

 

[Walter]

Don't know if this will help. I was afraid to use out treadmill because when using it I would drag my foot every few minutes and trip over it.
My brother found a beam in the ceiling, got up in the attic, drilled a hole and put a long eye bolt through it.
The we took one of those foam "swimming noodles" ( a thick one) ran a rope though the hole and brought the ends together making a circle. He hung the circle from the eye bolt. I get inside the circle and put the noodle under my arms.
When I trip, it catches me. I drag for a split second until the auto stop engages. Then I start again.
I tried a rock climbing harness but it was hard to get in and out. The noodle is fast and easy.
Whatever you do just be sure you use the emergency stop cord when you are using the treadmill.
We have enough problems without adding an injury from a fall to the list.
Wish you success and endurance for your cruise.

 

[TxRR]

Forget the treadmill. I stopped using it because of my foot drop and constant tripping. I use the elliptical machine and upright bike. It's just as good or better than walking. I get a good workout and feel my leg strength has dramatically improved. I also do the hack squat machine with very low weight, leg raise machine both front and back and calf raises. I also do alot of stretching especially my hamstrings.

 

[AKmom]

well I am into day 6 and not sure if I didn't over do on day 5. My legs have felt like rubberbands that have lost all their elasticity all day today. With all the standing and cooking that I had to do then the clean up....I just cannot put myself back up on it tonight. So I will continue tomorrow. One problem that it has aggrevated is that my right foot has toes that are deformed do to chronic contractions of the muscles. And even though I wear orthotics, it seems that the past 2 years I have had to have shots in that foot to relieve the pain. Looks like it will have to happen again because all this walking seems to have aggrevated it and its all swollen and painful. And before anyone asks...yes I am sure its not gout.

Also I have noticed an increase in facilations throughout my legs, hips and back since I started walking. I was getting them before just not all the time like it is now. Should I be concerned about that?

 

[olly]

personally i prefer a quieter as much pain free life as i can get.........would not even attempt to go on a treadmill as i know what it would do to me.
akmom i know you think your trying to help and strengthen your muscles but your doing the exact opposite,stretching exercises are the best thing to help and keep mobility.
if i do too much the odd fassic i get turns into a torrent of fassic's like you say,legs turn to jelly........then i know its time to rest.
i pushed myself for years and learn't the hard way.
this is just my opinion and qualified (trying to live with this damn desease)advice............feel free to ignore it.

 

[AKmom]

personally i prefer a quieter as much pain free life as i can get.........would not even attempt to go on a treadmill as i know what it would do to me.
akmom i know you think your trying to help and strengthen your muscles but your doing the exact opposite,stretching exercises are the best thing to help and keep mobility.
if i do too much the odd fassic i get turns into a torrent of fassic's like you say,legs turn to jelly........then i know its time to rest.
i pushed myself for years and learn't the hard way.
this is just my opinion and qualified (trying to live with this damn desease)advice............feel free to ignore it.

Olly I value your input just as much as everyones elses. I know what you are saying to be true as this past week I have experienced it first hand. The pain part I can get over as everything causes me pain. I have delt with chronic pain for years...no biggy there. But as for my legs I am finding out and am quite dismayed by the fact that they are not getting stronger even with the little bit of walking I do. I had worked up to doing one day at 2.5 miles an hour for 22+ minutes with an incline of 2.5. The problem was that my legs shook so hard when I got off and I walked as if I was drunk!

For two day after that I could not walk very straight and my legs felt weaker than they were. Yesterday I was doing better and so I got back on and walked 10 minutes at 0 incline from anywhere between 1.5 to 2.5 mph. I got off a little wobbly but was not tired (although I was not feeling fatigued when I did the 22 minute walk either...just my legs felt weak).

Today I went 16 minutes at 2.5 mph with a 1 incline. Again my legs are weak but mentally I would like to do more but just alittle afraid that if my legs are not willing to cooperate then I may have to give this up. (shhhhh....don't tell my hubby...he paid alot of money for the treadmill and hopefully he wont notice me not using it. My son has been using it so its not going to waste.).

I really would like to loose some weight and keep being able to walk for my cruises....just really ticked right now that things are not working my way! This too shall pass and I will get over it.

My bigger problem then my legs is that I am loosing so much strength in my hands. I get the cast off of my right hand on Friday and I am sure there will be some pt I need to do...but the weakness I feel in my legs, I also feel in my hands. How do I regain strength in both my hands if I cannot seem to build muscle in my legs?:sad:

 

[Marjorie R. Wilcox]

I believe you shouldn't be trying to walk on the treadmill. I know that if my hubby was to try it he would break out in a profuse sweat and sap his strength for at least a day. He would need to go to bed for a while. Once a day he can walk out to the woodpile and carry in a bundle of wood for the stove. This also makes him sweat if he doesn't take it slow enough. His legs are weak and he is short of breath. Exercise for him has to be going out to the mailbox to get the mail..... walking back and forth to the car.... emptying the dishwasher.... and doing the paperwork for the ELks and our financial records... and corporate income tax returns in the late winter ( and those sap his strength too... he works a couple hours a day on those.) I don't believe that exercise will gain strength for you. Of course you must keep moving, but that's enough. No, you can't sit like Jabba the Hut, but you cannot " go to the gym."

 

[olly]

joyce,it is hard to find a balance between staying active and controlling pls symptoms.
pushing your body into doing what you want it to do is very very bad and it only makes symptoms worse.

when i used to push myself i would end up so fatigued i would be bedridden for days and/or my legs would be so bad i could not move them at all.
we can bite through the pain but pain is the bodys way of telling us something is not right.

if you look up on the web you should be able to find some pt exercises that are mostly stretching ones...............dont be fooled into thinking these are easy.
they may look easy but you can really feel them working on the muscles,after 15-20 mins with my pt i was pooped and felt it later in the day.

as for hands mine are definatly getting weaker these days,can't do anything with them for more than half an hour as then they feel weaker,cramp up in pain.
dont know what you can do for hands other than wear some support when doing things(can get support bandage thing for hands,i have them and for my feet/ankles when feeling weaker) also just stretching the hand and finger joints.

like marjorie said,we can't sit around dpoing nothing.
i potter about in between sitting and resting................i do a bit of light house work,bake or something like a hobbie.
once a month i try to do a bigger clean like behind/under furniture,skirting ,clean out cuboards ect ect and that leaves me in a bad way even after taking extra baclofen before hand.

my mum used to say i did too much at once,i said if i did not do it in one go it would not get finished.....................these days nothing gets finished.

joyce,i hope you know i was only being matter of fact with you because i care and dont want you to get really ill.


caroline

 

[TxRR]

It sounds like you over doing it. Try cutting back to three days a week or cut back on the length of time and distance. I work out my legs only once a week but thats because I incorporate weight training. The rest of the time I just stretch.

I have gotten many compliments from different people, some that don't even know that i have PLS, about the muscle tone and definition of my legs and calves. And yes my legs do shake like you described but I just keep pushing myself. My doctor prescribed me Propranolol 20mg. daily which, is an alpha blocker. It's for tremors and is also good for your blood pressure. Public speakers also use it for nervousness. I take it before working my legs and it seems to work nicely.

You have to try different things until you find something that works. One thing I wouldn't do is give up. What's the worst that can happen? You could become crippled? Hmm, sounds like we are already in that situation.

Several neuros have complimented me on my physical appearence and not one has told me to stop working out like I do. One jokingly said he need a bouncer in his office and if I was interested.

 

[AKmom]

there is no doubt that I work hard when I do work out. I was a coach for over 16 years and its hard to not push myself into oblivion because I know what I use to be able to do. Before my first symptoms of PLS, I was 120 lbs and would run, walk, bike ride or play soccer every day of the week. No day was an inside only day unless I was sick with fever. From that first symptom, I would fall on the fields while coaching and I had problems with running into door jams when I was going through them from feeling off kilter. When I got sick with CMV and EBV simutaniously, that is when I really started loosing muscle strength overall...from being weak from those illnesses. I gained some of that back and have tried to no avail to keep control of the weight and exercise. I would push myself to the point of being layed up for weeks on end because I litterally could not move and hold myself upright. Then I had the stroke that effected my left side. I gained that back completely by pushing myself (coach instinct again) and it was about a year later that the left side started doing what the right side was doing.....

My point in saying this all is that I have been in a pity party for most of this week. Kicking myself internally for being weak. Not weak physically but weak mentally. I reconized yesterday that I was doing this and needed to really come to grips with the fact that this is going to be forever...and it sucks big time....but I am an overcomer and if my body wont coorperate then I will make the necessary adjustments and move on. Doing all I can do to stand , walk and zip my pants!

I got my cast off this morning. The ortho doc now has me in a removable brace that supports my thumb and wrist. I was unable to hold my hand up as there is definate deconditioning in the wrist muscles. I am hoping to gain all of it back but its going to take time. She also gave me a different thumb brace for my left hand because basically both thumbs keep going out of joint because of sublaxation of the tendons in the joints. This seems to be a reoccuring thing with me.

I will go back in after my next cruise for them to look at my foot. My gp doc and I have decided the reason that one of my toes on the right side is deforming and causing pain in which I require novacane/steroid shots every so often is because I injured it about 2 years ago and it probably tore the ligament/tendon for that toe, which never healed. I am waiting till after my cruise because it will most likely require surgery and I do not want to be bound to not being able to swim in the warm Caribbean sea because of recovery!

Ok I am done ranting....sorry about the negatives. I think we all have times like this where we just look at the circumstances of this disease and see the unfairness of it all. I do have days like this but I also know that my hope lies not in my circumstance of my flesh but where the circumstance of my heart and soul is placed in heavenly realms.

 

[Miss]

For what it's worth, my husband rides a recument bike everyday. He has had to slow it down a bit since diagnosis, but he could out ride his PT when we first got the diagnosis! I really do believe that it has helped him maintain alot of his mobility. It works on his range of motion much like the OT works with him on his upper body. As for a treadmill, I don't think he would have been able to do that.

 

[olly]

joyce i totally understand what your saying.
i too was very very active..................fulltime working single mum,going to the gym and running plus busy social life.
all that went out the window when i began with pls symptoms,many times i tried to get back into things but it was too much for my new body and i would end up in a state.
i became a totally different person with pls..............one that i hated and still long for my old life back but i had to resign myself to the fact its never going to happen.

swimming would be good for you if you want an exercise to loose wieght,it also works all the muscles.
i tried but my body from the waist down was too weak and would sink back into the water with each stroke...............gutted does not even begin to describe how i felt when this happend.
i told my pt and neuro and they were suprised as it showed i was alot weaker then we all thought.

we just have to keep as active as we can no matter how little and hope our progression is slow.
it is frustrating when mentally we are the same person but our body lets us down.............find that happens evey day.

glad to hear you have your cast off and i hope it continues to heal well.
a caribean cruise!..............now i am jealous lol.

 

[AKmom]

Caroline...
I wish I could swim every day! I do not go to the public pool because when I do swim in it...I always get sick afterward. Just too many kids and not very good pool cleaning in my opinion. However when I go to the Caribbean I swim every day. They keep the pool really clean and I also like swimming in the ocean as its so warm down there! We are complete opposites when it comes to swimming. I am a natural floater. Always have been. I was the one who never could get to the bottom of the pool to retrieve something unless it was shallow. I can litterally lay on my back and fall asleep floating away out to sea! I remember quite a few years ago, going to Hawaii with hubby. We went out to Humana Bay on Maui and were snorkeling. Ended up that we got out a little too far and when we tried to get back...we were caught in a rip tide. I just was not strong enough to get out of it and I was fighting to keep from being pulled into some jagged rocks.
Next thing I knew there was a lifeguard on a surf board right there. He said they knew we were going to be in trouble before we knew we were in trouble as we were in a dangerous zone. So we had to get on this guys surf board....I could not pull myself up. Quite embarrassing. At the time I blamed it on being fatigued from fighting the current (which was true too) but in reality I was having problems with muscle strength even then.

After we got back to home after the trip. I put myself through some grueling physical exercise because I didn't ever want to be embarrased like that again. All I managed to do was injure my shoulder muscles to the point that I still cannot lift my arms over my head for very long and they hurt all the time. That happened sometime in the 90's. I know that if I persue why they hurt...it will end up being a surgery.

Anyhow....thanks all for listening and understanding! I like talking to you all. Its nice to finally have a place where others can relate to what your going through.

 

[abbas child]

Joyce, although I wasn't as extreme as you, I also was big into exercise. Before sticking with a recumbent stationary bike, I walked trails with a dog, and since my bone density was poor, wore a back pack with weights in it. (before that I took ballet through my thirties) Then, I began tripping frequently until I sprained my ankle, found I didn't dorsaflex well anymore, and for that reason used the bike. Eventually, the fatigue after exercising was so extreme, I did Pilates (had been doing that anyway) and stretched. Oh, yes, I did lift hand weights for another year or so. The problem was, after doing these things--except for stretching--I had NO energy left. I had to stop. It does change the way you view yourself. It also changes how you look!

I hope you have a wonderful time on your cruise.

Ann...who is looking forward to a new body.8):-D:-D