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wmilo

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I don't think it's stupid to feel that way. No one on this forum thinks you're stupid to feel that way.

It's really hard to come to terms with our feelings as our bodies no longer serve us like they used to.

But, aside from the concern experienced by your caregivers and family, if you fall and injure yourself it won't help your UMN/PLS/ALS one bit. But it could result in a life-changing accident.
 

Miss

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Totally agree with wmilo! You are not in the minority with those feelings, I have found that this is what the majority of my patients experience, particularly men. Wmilo is correct. Many patients have also experienced falls that resulted in injuries that were life altering. While a bone might heal, use of that limb is often gone after a break ~ not always, but more often than not. Falls are Not Your Friend!
 

affected

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Jabba a PALS here once said it so well - I look less stupid using a walker than face planting.
I can't imagine the letting go needed, all the PALS here are my heroes, as was my husband. Please stay safe. (my husband suffered some serious injuries falling suddenly, and had significant pain for the rest of his days as a result)
 

Jabba

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I so appreciate the comments and concern. I am sitting here trying to think of a glib reply because I tend to use humor as a buffer but, in reality, I am a little scared and angry about this situation. Actually, the falls have tailed off a lot because I realized I couldn't move like I always have. I have forced myself to slow down, pick my steps and just be more careful. This has been hard because I never thought about these things, I just motored along! I played football, skied, was a body guard, built houses, ran half marathons, etc, etc. I did purchase a cane that I use sometimes and I will transition to a walker when necessary. Again, thank you!
 

swalker

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Jabba, I can relate. I am with you about using humor, being scared and angry, and reducing falls by being careful.

Don't lose the humor! I find it to be a big help.

You will get past being angry and scared.

Unfortunately, you will also discover that eventually, being careful will not prevent you from falling. That approach may work for awhile, but will eventually fail.

A big problem is that most of us cannot adequately predict when we will need to transition to more supportive equipment (cane to walker, walker to wheelchair, etc.). I encourage you to get the walker now, so that you have it when you suddenly realize you need it.

It was hard for me to start using a wheelchair. When the doctor first recommended it, I figured he was just wrong. I delayed investigating wheelchairs for a year. Once I realized a chair made sense, I started the process of getting one. It took 4 months to get the wheelchair! I now have five wheelchairs, so can choose the most appropriate one for the activities I plan during the day:).

As others have said, falls are bad. It took me a very long time to come to grips with what that meant. It means that not only do the falls injure us, but that we often don't have the ability to fully recover from those injuries. It sucks, but that is our reality. Embracing that reality has made a positive difference for me!

Steve
 

affected

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Well Jabba we are gunna be with you and humour is a great coping mechanism.
Sadly Steve is so right (and check his posts he is the king of wheelchairs and even goes skiing!

The 2 times my Chris had the serious falls he was literally just taking a simple step and his leg simply did not do what his brain had told it. When PALS fall, they often simply go over. Chris had very weak arms, so could do nothing to attempt to 'break' his falls.

But many amazing PALS here have learned to do so many amazing things without leg mobility, but it takes time to get past the acceptance and into the living with. Talking with the awesome folk here will help you get there bit by bit.
 

ReginaS

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Just to back up what others said already. My PALS was one of the most cautious, careful people I know. Even used cane, walker and wheelchair early. Even though he was so careful he had 2 major falls as it is impossible to anticipate or feel the degree to which the muscles won't hold up any longer. One time he fell backwards head first down a set of steps. Big shock and quite some bruises. After that he did not do stairs any longer. Another time he used his walker and also fell down backwards on a tile floor and broke his humerus close to the shoulder joint. Needless to say that he could not use that arm for a while, was uncomfortable and needed more care to get dressed, washed etc. After that he could not use the walker any longer and was in the wheelchair only which he actually really enjoyed. We were rather glad we had the wheelchair in the house already. He liked that precision driving and figuring it all out how to use it and use it efficiently.
His progression was relatively fast. We had a sense for that. So we scrambled a bit to get all the equipment in line. I think it might be harder to guess what one needs at which point in time when the progression is slow.
 

Mary2

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My PALS progressed from a 4 prong cane to a walker, then scooter and finally a wheel chair. One week my PALS walked 7 laps around the house with a rollater and then the next day was only able to walk less than a lap. Finally in March 2020 PALS was trying to get into the LIFT chair and slid/fell to the floor. A Deputy Sheriff came and she and I got PALS onto the bed. We were not prepared with a wheel chair; PALS spent 10 days in bed waiting for a loaner wheel chair to arrive.
 

Miss

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We were fortunate enough to be advised to have the next anticipated DEM on hand before my husband needed it. It was also suggested that we practice with the eqiupment so that we would be familiar with using it. That turned out to be a lifesaver on many occassions. Mobility loss can occur in the blink of an eye.
 

Jabba

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I don't know if I'm doing this right, asking a question here. Please let me know if it should be done differently. I have most if not all of my symptoms in my left leg, so far. I periodically have horribly painful cramps of my inner thigh and calf, always at night. I also have tremors in the left leg, always at night and so bad that it wakes my wife and rattles the headboard. I have always worn size 11 shoes and in the last year and a half, have had to get size 12. My 3 middle toes on both feet have developed heavy calluses because I push down so hard with my toes to compensate for balance issues. I'm just wondering if any of these are normal for ALS/PLS?
 

old dog

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Deformed toes seem to be one of the things that happen to most of us with MND. My favorite shoes were a pair of backless, open-toed pumps with a medium high chunky heel. When I stepped forward with the right foot, it started feeling like my shoe was flying off, so I compensated by curling my toes. My big toes are still straight, but all my other toes are either mallet toes or hammer toes. Oddly, they don't cause any pain.
 

old dog

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Forgot to address the cramping and twitching issue. I think this is quite common in the ALS/PLS community. I think the severity of your symptoms is probably due to your long hours at work where I assume you are on your feet most of the time. I keep some pain pills on hand and take 1/2 of one if the cramping is severe. This doesn't happen unless I've been on my feet more than usual. Like you report, this type of twitching and cramping occurs at night.

I also take a collagen powder recommended by a doctor which has helped alleviate cramping. It has the added benefit of reducing fine wrinkles in the face. (A losing battle at my age)
 

ShiftKicker

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Jabba, you can start a thread for any question you have, or you can continue posting in this one. Your choice!

Re foot changes- yes. As old dog has said, I've also compensated for weird gait and some of my toes are very callused. Ones I wouldn't expect, but there you go! It's even worse now I no longer get pedicures- not til people sort themselves out vaccine-wise, anyhow.

What meds, if any, are you taking for spasticity/cramping? Any supplements? Magnesium can help w painful cramping- it's what I take and it seems to work well. I also try to keep on top of spasticity, as it causes muscle fatigue, which in turn makes cramping worse at night. If you use the search function for the forum, you can turn up all sorts of things that folk have taken to help with cramps.

(Old dog, I'm immediately rushing out to get collagen powder because I had no idea it helped w wrinkles. I won't deny a touch of vanity still.)
 

Miss

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Baclofen worked well for my late husband and many of our patients in relieving leg cramping.
 

lgelb

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Magnesium (in food, or as cream or tablets) and diet tweaks around the balance of calcium/sodium/potassium are a good first approach to cramps. There is also some science for pickle juice, along with warm socks, varying position, etc.

Both baclofen and tizanidine can have significant side effects such as dizziness/sedation, though they are more specific for spasticity per se.

Baclofen is more likely than tizanidine to cause weakness and has more drug interactions, so if you can deal with the caffeine interaction for tizanidine, it's a safer second line.
 
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