LizzieII
New member
- Joined
- Dec 28, 2013
- Messages
- 7
- Reason
- Friend was DX
- Country
- US
- State
- NC
- City
- NC
I am a close longtime friend of a PALS who was diagnosed last year. I know she and her boyfriend do not want advice from well-meaning but clueless friends. I do understand and am trying not to say too much. I know she is seeing someone a few times a year who is supposedly a specialist at an ALS Clinic. But I am very worried about her and wanted to seek some advice here. I hope folks here will take my concern for what it is---true caring—and not intrusion. She and her boyfriend aren’t big on reading the internet so I don’t know how much additional information they have sought out to help them cope with her condition. I think her boyfriend loves her and is very concerned about her but IMO he seems to have an awfully “fatalistic” attitude about what she can and can’t do.
She has a custom-fitted brace for one foot for foot drop. She’s had it for a few months. The brace goes under her foot and up her leg but she still has had several potentially dangerous falls recently. She was told by the technician who fitted her brace that if she needed a brace for the other foot she would have to get a walker. From reading this site, it sounds like some PALS have TWO foot braces and don’t need a walker yet. Is that true? I don’t know why she and her boyfriend are willing to take the word of a technician who was not even associated with the ALS Clinic (but that’s where they were referred by the clinic for the brace.)
Because she doesn’t want a walker (sometimes uses a cane although probably not often enough), I’m not sure she and her boyfriend have even told her doctors about her falls. (I know I can’t do anything about that.) She also has the use of only one arm now, so she would need a one-sided walker anyway. At this point, I’m not sure a one-sided walker would be much more help than the quad cane she has but doesn’t always use.
Also, when she got her brace, she said it made that leg feel much too long. Is that typical? I’ve read the posts about foot braces and I’ve never seen that comment. (I’m guessing it felt sort of like a walking cast which I had once for a broken bone. Those do cause a kind of “hopping” walk) She hasn’t had any issues with pressure sores so the fit isn’t off in that way but she did also say her custom-fitted brace made the leg feel much longer than did the sample brace they had her try on at the ALS Clinic.
I guess she has eventually adjusted to the brace but she never wears it at home. From reading on this site I know some people wear their braces only when they expect to have to walk a lot but it seems to me if THIS particular brace does make her leg too long, going back and forth between wearing it and not wearing it may be problematic. The closest I can imagine would be if I were to wear a shoe with a heel on one foot and a flat shoe on the other foot. If I did that all the time I might learn to walk fluidly and easily. But if I did it only some of the time and I wore flats on both feet the rest of the time, I think I’d ALWAYS feel off-balance but maybe I am over-simplifying. But I am worried the brace was not properly fitted by the technician (a technician who apparently felt free to give medical advice.) I’ve never had a brace but I know other “custom-fitted” items do require adjustment (like crowns on teeth and casts for broken bones)
The ankle on the foot that does not have a brace is now bent/turning in and that foot is pointed outwards like a duck walks. The ankle looks sort of collapsed. (Over-pronated?) I am wondering if that is from ALS directly, is an unavoidable effect of having the other leg be weaker, if it means she needs a second brace (and not necessarily a walker) or if it is from an uneven walk caused by an improperly fitted brace on the other foot that put extra stress on the non-braced foot. I am also wondering if the current position of that non-braced foot (not straight on and not hitting the ground squarely but sort of side-angled to the direction she is trying to walk) is contributing to her falls and to some of her instability. Is it likely a shoe insert of the kind recommended for ankle pronation (for those without ALS) would help? She does have what appears to be normal flexibility and movement in that foot when she is sitting. She wears tennis shoes (solid ones) but I am also wondering if some sort of “high-top” shoe would be better. I don’t know if she would have trouble getting her weaker foot into a boot-type shoe but one with a full zipper might work. I’m also wondering if she needs to get shoes with thick removable insoles/inserts and take the insert out of the shoe she wears on the braced foot to try to make her legs more equal in length. She and her boyfriend seem to have accepted the way the brace fits and makes her leg feel as unavoidable. (I know they’ve not gone back to the brace shop to ask any questions.)
Any advice or suggestions? Thank you.
LizzieII
She has a custom-fitted brace for one foot for foot drop. She’s had it for a few months. The brace goes under her foot and up her leg but she still has had several potentially dangerous falls recently. She was told by the technician who fitted her brace that if she needed a brace for the other foot she would have to get a walker. From reading this site, it sounds like some PALS have TWO foot braces and don’t need a walker yet. Is that true? I don’t know why she and her boyfriend are willing to take the word of a technician who was not even associated with the ALS Clinic (but that’s where they were referred by the clinic for the brace.)
Because she doesn’t want a walker (sometimes uses a cane although probably not often enough), I’m not sure she and her boyfriend have even told her doctors about her falls. (I know I can’t do anything about that.) She also has the use of only one arm now, so she would need a one-sided walker anyway. At this point, I’m not sure a one-sided walker would be much more help than the quad cane she has but doesn’t always use.
Also, when she got her brace, she said it made that leg feel much too long. Is that typical? I’ve read the posts about foot braces and I’ve never seen that comment. (I’m guessing it felt sort of like a walking cast which I had once for a broken bone. Those do cause a kind of “hopping” walk) She hasn’t had any issues with pressure sores so the fit isn’t off in that way but she did also say her custom-fitted brace made the leg feel much longer than did the sample brace they had her try on at the ALS Clinic.
I guess she has eventually adjusted to the brace but she never wears it at home. From reading on this site I know some people wear their braces only when they expect to have to walk a lot but it seems to me if THIS particular brace does make her leg too long, going back and forth between wearing it and not wearing it may be problematic. The closest I can imagine would be if I were to wear a shoe with a heel on one foot and a flat shoe on the other foot. If I did that all the time I might learn to walk fluidly and easily. But if I did it only some of the time and I wore flats on both feet the rest of the time, I think I’d ALWAYS feel off-balance but maybe I am over-simplifying. But I am worried the brace was not properly fitted by the technician (a technician who apparently felt free to give medical advice.) I’ve never had a brace but I know other “custom-fitted” items do require adjustment (like crowns on teeth and casts for broken bones)
The ankle on the foot that does not have a brace is now bent/turning in and that foot is pointed outwards like a duck walks. The ankle looks sort of collapsed. (Over-pronated?) I am wondering if that is from ALS directly, is an unavoidable effect of having the other leg be weaker, if it means she needs a second brace (and not necessarily a walker) or if it is from an uneven walk caused by an improperly fitted brace on the other foot that put extra stress on the non-braced foot. I am also wondering if the current position of that non-braced foot (not straight on and not hitting the ground squarely but sort of side-angled to the direction she is trying to walk) is contributing to her falls and to some of her instability. Is it likely a shoe insert of the kind recommended for ankle pronation (for those without ALS) would help? She does have what appears to be normal flexibility and movement in that foot when she is sitting. She wears tennis shoes (solid ones) but I am also wondering if some sort of “high-top” shoe would be better. I don’t know if she would have trouble getting her weaker foot into a boot-type shoe but one with a full zipper might work. I’m also wondering if she needs to get shoes with thick removable insoles/inserts and take the insert out of the shoe she wears on the braced foot to try to make her legs more equal in length. She and her boyfriend seem to have accepted the way the brace fits and makes her leg feel as unavoidable. (I know they’ve not gone back to the brace shop to ask any questions.)
Any advice or suggestions? Thank you.
LizzieII