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It’s Easy When It’s Easy, Walking with LEMS
For years I’ve been extolling the virtues for getting out and walking, as best one can with LEMS. The benefits of fresh air, sunshine, and endorphin spike are there for the taking.
It’s easy when it’s easy. For me, not so much lately. And when it gets tough, it tests your willpower. My two walks this weekend were horrible. Really bad. I’m three days out from my IVIG infusion, and it’s been a tough 8 or 9 days. My weekend walking rates were 26 and 27-minute mile pace (aka bad). And it hasn’t been fun either. The hips and quads are weak. Walking feels like plodding. Why, because it is plodding! Sounds like I’m a whiner. I am I guess.
Today is Monday. I plan to get a walk-in later in the day. It’s going to be cold, so maybe I’ll hit the gym treadmill for a change. I haven’t been in there in a while. Today is another day and the LEMS may be better. But, this is getting to be a test of will. Walking is difficult right now. As I said, it’s easy when it’s easy. Let’s keep pushing.
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11 Replies
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Hi Price,
I remember the days when the strength ran out before the IVIg. Then the miraculous boost it gave..until before the next infusion. IVIg was taken away from me for reasons I won’t go into here but I might have a suggestion to make the walking easier. On my weak days I have found that the hiking poles that hikers use really help. I bought mine at REI but I’m sure other outdoor stores have them. What I like about them is that the height can be adjusted so one can stay upright and not bent over. The poles add a bit of propreoception which helps both balance and speed. Canes and walkers cause people to stoop and lean over which I could never understand why that was considered healthy movement
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And it’s cold here today so I went up the gym and did a half mile on the treadmill. It went just okay. I can feel the hip weakness. But, we gotta do what we gotta do.
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@searching4answers Ah, that’s an excellent idea. My walking lately has become more plodding and with some balance issues. Sometimes I wonder if the traffic around me sees me “staggering”. How embarrassing!
That pole idea is wonderful. We have an REI close by so I’m going to step in and check them out. I had a walker when I left the hospital in 2009. Yikes! You don’t want to use those unless absolutely necessary (which sometimes they are).
And I think I’ve been offered a cane in the VA umpteen times, but I always refuse.
The walking, hiking pole sounds good.
Thanks!-
Price, I purchased my set of poles back before LEMS for some more adventurous hikes I had planned. I found them on Amazon, a pair for about $20. They are aluminum and collapse quite small. I am sure you can do better than REI for pricing.
Any more, I do not leave my house without either the hiking sticks or the cane.
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@bernie thanks for that suggestion. I’ll be shopping soon. After all, it is Christmas time!
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I went all out and bought the Black Diamond brand with the cork handles. I researched different types and that brand seemed to have the best reviews. They can be broken down to a small size if needed to carry in plane or somewhere that you don’t want to trip unsuspecting passerbys 🙂 You can also buy rubber tips for them which I did so that I can use them inside.
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Excellent info! Thank you @searching4answers.
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My balance is pretty bad. However, I try to walk on the treadmill especially during summer and winter seasons. I can’t handle heat and the winters are hard on my asthma.
I only wish I could get in daily exercise, but my body won’t allow that.
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@wanda-king-grischkowsky I’m glad you’re making it to a treadmill when you can! They provide the security of hand rails on the side and from so you can keep your body under control while walking. Keep it up when you can!
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Good Morning.
I also have my good and bad days for walking. The longer I stand or the longer I walk to worse I get. I do venture out to the house but am no table to walk far without pain in lower back, hips and thighs. then comes the burning sensation in my legs and massive weakness. I cant help but think that I also have a lumbar disc issue along with the LEMS diagnosis. I take Rizurgi but I am never 100 %. Is this normal?-
@michm7270 I rarely ever think I’m 100%. Wouldn’t that be nice! And I’m on Mestinon, IVIG, and Firsdapse. I hope you will report the other physical issues you mention to your Primary for further evaluation. Diagnostic imaging could detect something that can be helped. You probably do already, but a suggestion would be to front-load your daily activities. Frequently, I’m pretty good in the morning, before a day of chores or out shopping.
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