Re: Forgot to take my LDN

[Guest guest]

Last night I forgot to take my LDN. I realized this after I was situated in bed. I was home alone and didn't want to fight my way out of bed, so I opted to go without. So far, I haven't noticed any problems. I have been taking LDN since Nov '03, and this was the first time I have forgotten. A couple of times I forgot, but I had someone here to bring it to me. I don't plan on forgetting tonight, but it is good to know that I haven't had any major symptom return by missing one dose!

In response to others recommending excercise for the stiffness/contractures: Probably excercise is the most beneficial thing we can do. It's just about impossible when one is completely paralyzed. I know that is hard to imagine unless one is in the position. I NEVER dreamed that this could happen! Physical therapy is good, but it's not enough. The automatically powered excercycle, I think, would be great, but I'm on a fixed income and can't afford it. (That's just the way it is!) Hippotherapy would probaby be real good too. (Horseback riding.) I plan on doing that as soon as the weather warms enough. Just my opinion!

Marcie

[Guest guest]

In a message dated 5/7/2005 2:39:21 PM Central Daylight Time, cindyyoung@... writes:

Hi Marcie,

in Austin here.

What is the theory/ benefit behind wheelchair-bound people horseback riding?

As far as missing a night of ldn...don't some advocate skipping doses periodically, on purpose?

I'm not too surprised that there was no problem.

How are things in West Texas?We are having a cool spring in Central Texas....very good for us mser's here

++++++++++++++++++++++++++++++++++++++++++++++++++++

,

West Texas is nice today. We did have a bit of winter in the past week, lots of cold and wind, but I think it has passed! Loking forward to Spring and Summer!

From what I gather, the theory behind hippo therapy has to do with the movement of the horse immulating a walking motion. For me pesonally, I feel like the stretch to the inner thighs will be good for me.

Some do skip a dose or two of LDN on a regular basis, but I haven't felt the need. I really like not having to go to the restroom 4 times per hour!

[Guest guest]

Hi Marcie,

in Austin here.

What is the theory/ benefit behind wheelchair-bound people horseback riding?

As far as missing a night of ldn...don't some advocate skipping doses periodically, on purpose?

I'm not too surprised that there was no problem.

How are things in West Texas?We are having a cool spring in Central Texas....very good for us mser's here.

-- Re: [low dose naltrexone]Forgot to take my LDN

Last night I forgot to take my LDN. I realized this after I was situated in bed. I was home alone and didn't want to fight my way out of bed, so I opted to go without. So far, I haven't noticed any problems. I have been taking LDN since Nov '03, and this was the first time I have forgotten. A couple of times I forgot, but I had someone here to bring it to me. I don't plan on forgetting tonight, but it is good to know that I haven't had any major symptom return by missing one dose! In response to others recommending excercise for the stiffness/contractures: Probably excercise is the most beneficial thing we can do. It's just about impossible when one is completely paralyzed. I know that is hard to imagine unless one is in the position. I NEVER dreamed that this could happen! Physical therapy is good, but it's not enough. The automatically powered excercycle, I think, would be great, but I'm on a fixed income and can't afford it. (That's just the way it is!) Hippotherapy would probaby be real good too. (Horseback riding.) I plan on doing that as soon as the weather warms enough. Just my opinion! Marcie

[Guest guest]

Hi Marcie,

I bet I couldn't get my legs around a horses girth these days.

I haven't missed very many doses of my ldn. In fact I can only think of two times, and they were on purpose, as an experiment. If ldn gave me bladder relief, I'd never skip either.I'm still up 3x night, and several times an hour in the daytime.

-- Re: [low dose naltrexone]Forgot to take my LDN

In a message dated 5/7/2005 2:39:21 PM Central Daylight Time, cindyyoung@... writes:

Hi Marcie, in Austin here. What is the theory/ benefit behind wheelchair-bound people horseback riding? As far as missing a night of ldn...don't some advocate skipping doses periodically, on purpose? I'm not too surprised that there was no problem. How are things in West Texas?We are having a cool spring in Central Texas....very good for us mser's here ++++++++++++++++++++++++++++++++++++++++++++++++++++ , West Texas is nice today. We did have a bit of winter in the past week, lots of cold and wind, but I think it has passed! Loking forward to Spring and Summer! From what I gather, the theory behind hippo therapy has to do with the movement of the horse immulating a walking motion. For me pesonally, I feel like the stretch to the inner thighs will be good for me. Some do skip a dose or two of LDN on a regular basis, but I haven't felt the need. I really like not having to go to the restroom 4 times per hour!

[Guest guest]

In a message dated 5/8/2005 10:58:03 AM Central Daylight Time, TwisterAlley2@... writes:

Marcie,

If possible push your wheelchair facing the side of your bed and if foot rests remove, remove them, lock the chair wheels, lean forward and place your hands and elbows on the bed. Try to gently push upward with your feet giving your feet and leg muscles stimulation. Start slow and build up the number of times you try. If possible while laying in bed bend each knee and drag your foot towards you then slide your leg back down. Increase the amount of time you do this. If you can get both knees bent in bed swing your knees from side to side and loosen up your hip and lower back muscles. These are the things I did after each new episode of paralysis. I'm not going to say any of it will be easy cause it's not, but unfortunately no pain, no gain. Not all your muscles will recover but the good ones will get better slowly but surely and it may take years. I have had to get my mind set to the Reeve mode. That kind of mind set will take you further than you can imagine.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

,

Are you saying to face the side of the bed and lift myself up? I use the walker to lift myself and get from my chair onto the bed, and it's very dangerous with no balance. As I lay in bed, bending at the knees is not even possible. The only way this happens is with involuntary contractures. The concrete legs don't slide! Then I have to use a cane to push my heels down and straighten my legs back out. I know that this paralysis thing is difficult to understand if one has never been there, or at least to this degree. I have come to the conclusion that paralysis for one can be something completely different in another! I walked until I couldn't take a step. I bent and lifted my knees until my feet were nailed to the floor. It's not that I don't try! It just don't work anymore! Laying in bed and swinging the hips from side to side? If I could do that I wouldn't be laying flat on my back all night! Thanks for the tips anyway. I've been in the Reeve mode since day one. I won't give in. It's not easy, but I don't see any other option. You're fortunate that your progression didn't take you quite this far in the 14 years that you were going downhill. I only had two years from diagnosis until I was in this shape. Apparently, my nerves are gone!

When others are around me and I try to do something for myself, they are jumping up & down. It scares them to see me do stuff for myself! I ask them how they think I manage since I'm here alone 95% of the time! My poor dad is a basket case around me because he wants to do everything for me. I ask him how he thinks I manage the 98% of the time he's not here? You can see that he could break down & cry to see how hard my life is! I'm 43, he's nearly 70! It's not supposed to be this way!

Marcie

[Guest guest]

> Last night I forgot to take my LDN. I realized this after I was situated in

> bed. I was home alone and didn't want to fight my way out of bed, so I opted

> to go without. So far, I haven't noticed any problems. I have been taking

> LDN since Nov '03, and this was the first time I have forgotten. A couple of

> times I forgot, but I had someone here to bring it to me. I don't plan on

> forgetting tonight, but it is good to know that I haven't had any major

symptom

> return by missing one dose!

>

> In response to others recommending excercise for the stiffness/contractures:

> Probably excercise is the most beneficial thing we can do. It's just about

> impossible when one is completely paralyzed. I know that is hard to imagine

> unless one is in the position. I NEVER dreamed that this could happen!

> Physical therapy is good, but it's not enough. The automatically powered

excercycle,

> I think, would be great, but I'm on a fixed income and can't afford it.

> (That's just the way it is!) Hippotherapy would probaby be real good too.

> (Horseback riding.) I plan on doing that as soon as the weather warms enough.

Just

> my opinion!

>

> Marcie

=========

Marcie,

If possible push your wheelchair facing the side of your bed and if foot rests

remove, remove them, lock the chair wheels, lean forward and place your hands

and elbows on the bed. Try to gently push upward with your feet giving your

feet and leg muscles stimulation. Start slow and build up the number of times

you try. If possible while laying in bed bend each knee and drag your foot

towards you then slide your leg back down. Increase the amount of time you do

this. If you can get both knees bent in bed swing your knees from side to side

and loosen up your hip and lower back muscles. These are the things I did after

each new episode of paralysis. I'm not going to say any of it will be easy

cause it's not, but unfortunately no pain, no gain. Not all your muscles will

recover but the good ones will get better slowly but surely and it may take

years. I have had to get my mind set to the Reeve mode. That kind

of mind set will take you further than you can imagine.

[Guest guest]

In a message dated 5/8/2005 3:43:32 PM Central Daylight Time, TwisterAlley2@... writes:

Great Marcie, you can then push your behind out of the chair. That's what I meant. Don't use the walker for support during this exercise but your bed matress to lean against. Don't stand straight up either. Just push your rear end off of the wheelchair seat maybe 5 times to start with maybe 3 times per day.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++

,

OK. I tried this technique. Are my legs supposed to do something? When I use the walker, it's my arms that lift me up to a standing position. If my legs don't lock at the knees, then I'm in the floor, with 911 being my only chance of getting up. I must be doing something wrong. My legs do nothing voluntarily. It has been my experience that I will be doing a job, say getting off of the toilet, and all of a sudden, what has worked for several years, doesn't work anymore. I have to figure out a new way. Maybe this is progression in a case like mine. Sucks! With my right hand using the grab bar and my left hand grasping the wheel of my chair, I lift myself up, usually using my left hand to manually lock my left knee so I can stand and situate clothing. I have to hold onto the grab bar for balance. Sometimes that's not enough! 911 to the rescue!

Massage therapy is not in my budget. I wish it was! Your mother must be a saint! If I let mine help like that, she would have to tell everyone in town about it and how bad of shape I'm in! (She loves the glory my MS brings her!) She once told me when I asked her to tell people that I'm doing well, that if I didn't want people to know how I'm doing then I didn't need to go out in public! What a joy! Needless to say, I don't spend much time with Mom!

Marcie

[Guest guest]

> In a message dated 5/8/2005 10:58:03 AM Central Daylight Time,

> TwisterAlley2@w... writes:

>

>

> > Marcie,

> >

> > If possible push your wheelchair facing the side of your bed and if foot

> > rests remove, remove them, lock the chair wheels, lean forward and place

your

> > hands and elbows on the bed. Try to gently push upward with your feet

giving

> > your feet and leg muscles stimulation. Start slow and build up the number

of

> > times you try. If possible while laying in bed bend each knee and drag your

> > foot towards you then slide your leg back down. Increase the amount of time

> > you do this. If you can get both knees bent in bed swing your knees from

> > side to side and loosen up your hip and lower back muscles. These are the

> > things I did after each new episode of paralysis. I'm not going to say any

of it

> > will be easy cause it's not, but unfortunately no pain, no gain. Not all

your

> > muscles will recover but the good ones will get better slowly but surely and

> > it may take years. I have had to get my mind set to the Reeve

> > mode. That kind of mind set will take you further than you can imagine.

> >

> >

>

> +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

> ,

>

> Are you saying to face the side of the bed and lift myself up? I use the

> walker to lift myself and get from my chair onto the bed, and it's very

dangerous

> with no balance. As I lay in bed, bending at the knees is not even possible.

> The only way this happens is with involuntary contractures. The concrete

> legs don't slide! Then I have to use a cane to push my heels down and

> straighten my legs back out. I know that this paralysis thing is difficult to

> understand if one has never been there, or at least to this degree. I have

come to

> the conclusion that paralysis for one can be something completely different in

> another! I walked until I couldn't take a step. I bent and lifted my knees

> until my feet were nailed to the floor. It's not that I don't try! It just

> don't work anymore! Laying in bed and swinging the hips from side to side?

If I

> could do that I wouldn't be laying flat on my back all night! Thanks for the

> tips anyway. I've been in the Reeve mode since day one. I won't

> give in. It's not easy, but I don't see any other option. You're fortunate

> that your progression didn't take you quite this far in the 14 years that you

> were going downhill. I only had two years from diagnosis until I was in this

> shape. Apparently, my nerves are gone!

>

> When others are around me and I try to do something for myself, they are

> jumping up & down. It scares them to see me do stuff for myself! I ask them

how

> they think I manage since I'm here alone 95% of the time! My poor dad is a

> basket case around me because he wants to do everything for me. I ask him how

> he thinks I manage the 98% of the time he's not here? You can see that he

> could break down & cry to see how hard my life is! I'm 43, he's nearly 70!

It's

> not supposed to be this way!

>

> Marcie

===========

Great Marcie, you can then push your behind out of the chair. That's what I

meant. Don't use the walker for support during this exercise but your bed

matress to lean against. Don't stand straight up either. Just push your rear

end off of the wheelchair seat maybe 5 times to start with maybe 3 times per

day. Try to retrain your legs if possible. Most of my worst paralysis was in

my upper extremeties, especially my neck. I couldn't hold my own head up for 3

years. I went through extensive physical and massage therapy to be able to hold

my head up again. My mom would continue the physical therapy exercises and

massage me herself on days I didn't go to the therapists. My MS has affected my

upper extremities more than the lower. I've had paralysis in my left leg twice

but managed to regain enough function in it through physical therapy and

massage. It's the leg people notice most when I walk. My poor arms and torso

have had so many paralysis episodes that I finally lost count. My right arm has

bad lymphoedema from the last paralysis. I now have to buy my shirts to fit the

right arm, not the rest of me. Most of my shirts are a size too big since I

have to buy the shirt to fit the arm. Physical therapy and massage again

brought it back to functionable. I believe the massage therapy is just as

important as the physical therapy. I don't believe I would have gained as much

function back with physical therapy alone. Is there a place near you to get

massage therapy? No less than an hour of massage. Find someone who knows what

they are doing. And give that horseback riding a try. I get charley horses in

my groin area when I try to stradle a horse. I'm very spastic in the groin

area. Maybe I could ride a skinny horse...LOL.

[Guest guest]

> In a message dated 5/8/2005 3:43:32 PM Central Daylight Time,

> TwisterAlley2@w... writes:

>

>

> > Great Marcie, you can then push your behind out of the chair. That's what

> > I meant. Don't use the walker for support during this exercise but your bed

> > matress to lean against. Don't stand straight up either. Just push your

> > rear end off of the wheelchair seat maybe 5 times to start with maybe 3

times

> > per day.

> >

> >

> > +++++++++++++++++++++++++++++++++++++++++++++++++++++++

> >

> > ,

> >

> > OK. I tried this technique. Are my legs supposed to do something? When I

> > use the walker, it's my arms that lift me up to a standing position. If my

> > legs don't lock at the knees, then I'm in the floor, with 911 being my only

> > chance of getting up. I must be doing something wrong. My legs do nothing

> > voluntarily. It has been my experience that I will be doing a job, say

getting

> > off of the toilet, and all of a sudden, what has worked for several years,

> > doesn't work anymore. I have to figure out a new way. Maybe this is

> > progression in a case like mine. Sucks! With my right hand using the grab

bar and my

> > left hand grasping the wheel of my chair, I lift myself up, usually using my

> > left hand to manually lock my left knee so I can stand and situate clothing.

> > I have to hold onto the grab bar for balance. Sometimes that's not enough!

> > 911 to the rescue!

> >

> > Massage therapy is not in my budget. I wish it was! Your mother must be a

> > saint! If I let mine help like that, she would have to tell everyone in

town

> > about it and how bad of shape I'm in! (She loves the glory my MS brings

> > her!) She once told me when I asked her to tell people that I'm doing well,

> > that if I didn't want people to know how I'm doing then I didn't need to go

out

> > in public! What a joy! Needless to say, I don't spend much time with Mom!

> >

> > Marcie

=======

Marcie,

move here to Northeast Arkansas and I will share my mom with you. My mom has

massaged me for an hour and a half and sometimes up to 2 hours after working

from 9am to 7pm 5 days a week. My mom's support and efforts to keep me

physically moving is one of the reasons I am able to function independently.

I thought you were pushing up with your feet, I didn't realize you were using

your hands and arms.