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LizzieII

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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
 

FSHolbrook

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I use AFOs but, I noticed right away when shopping if I pushed the cart I could walk much better and faster. I went out and got a walker it makes a big improvement in my walking ability. There are also elastic laces for shoes so that you can have the AFOs in the shoe and then get your foot into the shoe with out having do do anything with the laces. Not telling your health care provider about falling is myopic. It is in the very best interest of the ALS patient to share everything that is going on--how else can you get help?

Rick
 

affected

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Hi Lizzie,

she needs to have any equipment decided on and ordered, and then tested with her by specialists, and she needs to want to do this.

It may be hard to watch from the outside for you and I understand that.

PALS should conserve their energy and avoid falls as injuries do not heal well and often speed up progression. Of course I can't speak for them, but they may be doing just this and it seems to someone else fatalistic.

This disease is cruel and it is so hard to watch someone you love deteriorating this way, your friend is lucky to have friends such as you that care so much. Sometimes we have to let them make their own choices, good or bad.
 

Barbie

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you sound like a dear and caring person, but I think you may be over stepping your bounds by worrying so much about her braces. you say she goes to an ALS clinic several times a year--so that is not "fatalistic" at all. believe me, they are giving her good advice and understand her condition a lot more than you do. her progression will continue despite the brace so you saying she should be wearing it more or have a second one is really nothing you know about.

I don't want to hurt your feelings, But as a CALS, I hate "friends" who would come over and suggest things to make him better. that is not a friend in my opinion and I avoid them. They are not really knowledgeable about ALS or what my Pals is facing daily. A real friend comes over and watches TV with my husband, or brings a dinner over, or fixes the broken pipe on my washer, or mows my lawn or cries with me or laughs with me--is just there and loving and giving not judging.

Lizzie you said it yourself--well meaning but clueless. So use your love to really make her life better and use your energy to DO things for her to help her and keep her happy. Let her and her boyfriend be in charge of managing the disease. I am sure we have Lady PALS who could give better suggestions, but you could take her out to lunch every week, give her a foot or hand massage every week, organize other friends to bring meals once a week to her house, organize a spring cleaning of her house or yard, offer to do her laundry, bring over a movie and some wine and enjoy time with her.

Best of luck to you and to her too!
 

mrvaughan

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Hi Lizzie,
Your friend is lucky that you really care about her. I agree with Barbie and want to add something. So many people seem to have so many opinions, that it just adds a lot of stress when they voice them and it makes me second guess my well thought out choices for my PALS. The very best thing that a friend can do is be there and to help out. Do the dishes without asking, offer to help with holiday decorations, talk about normal things. I have noticed that an ALS patient's world seems to get very small. The more there are people there to widen their world, the healthier and better off they are.
Mary
 

LizzieII

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Thanks for all the advice. I was hesitant to post initially as I suspected I might just be told to “butt out.” (Which is what I was told in some posts but the wording was much more tactful and polite than “butt out” so thank you.)


My initial questions were really more about what others have found to be true and helpful with AFOs/braces, not about what would definitely apply to my friend. I wasn’t planning to pass it anything said as gospel truth to her. But I do know neither the boyfriend nor my friend reads literature or forums about ALS. Of course, some may prefer not to read (obviously that’s not true of people here) since the conflicting information may be overwhelming as some have mentioned. But not reading at all may mean that they miss things that would be of benefit now to help them cope but may be less helpful later on. I thought if I had more information from either care-givers or PALS I might be able to say more accurate/helpful things to them if the opportunity presented itself. My friend IS seen by the specialist twice a yr for visits that, after the initial longer workup, have been about 1/2 hr in length. But I’m not sure everything they may need to know about coping with this devastating disease can be covered in 1 hour a year. My husband died of cancer years ago (before we had home internet) and while I didn’t want to hear from well-meaning friends about miraculous “snake oil” cures available in other countries, I welcomed suggestions that might help us cope with his illness (such as ideas about foods that would be appealing/digestible, ways to conserve his energy, ways to help him be more independent when he felt up to it, etc)


So at the risk of repeating myself, the specific information I was initially seeking (with a few more details): I would really like to know if anyone who has one AFO found it made the braced leg much longer than the non-braced leg (not a wider foot that larger shoes might take care of, a noticeably longer LEG). And I wanted to know if anyone had two braces/AFOs prescribed without a walker being ordered/prescribed as required. (It sounds like you might have had two, Rick, without initially having a walker.) It was not a doctor or PT/OT specialist who told my friend she’d need a walker if she got another brace—it was a technician not associated with the ALS clinic. And my friend has said to me she won’t ask if she needs another brace since she is strongly opposed to having a walker. That may be short-sighted—and I think it probably is---but if the technician was WRONG and walkers AREN’T automatically required for everyone who has a second brace, it seems that might be useful information for her to have. Since she can’t use one arm, a regular walker probably won’t be easy for her to manage. When I’ve taken her shopping as long as I push and direct the cart, using it for balance does help her. But she can’t push well or turn corners by herself with just one arm. So I understand why she is sure she won’t be able to use a walker.


She is being seen by a specialist. However, her boyfriend has said to me in front of my friend "it won’t do any good because I know she’s going to be in a wheelchair in a few months anyway.” I’m sorry if the term is offensive to some but I’m not sure how else to describe his attitude except as “fatalistic” (and IMO not that helpful to my friend although I don’t think he realizes that.)


She may be in a wheelchair soon, but continued falls (some involving emergency services) would seem to make that outcome even more likely or cause an even worse outcome. I realize the frequent falls since she got the brace may simply represent progression of the disease. But if no one else here has had the experience of having a brace make the leg noticeably longer than the non-braced leg, it surely seems the increasingly falls since she got the brace and the odd, dramatically changed appearance of the non-braced foot since she got the brace MAY be caused—at least in part---by an improperly fitted brace and/or by an urgent need for a second brace. (She has not been seen by a doctor since she got the brace since they see her only twice a year.)


I would like to think she is getting good care at the clinic but having worked in non-neurology areas of the medical field, I know that care can vary greatly even at facilities that are supposedly excellent. I’ve also gleaned from reading posts on this site that not everyone has had good experiences at supposedly excellent ALS Clinics. So while I would like to, I can’t assume she is getting what she needs medically—especially since I am not at all sure during the 2 x yr visits either she or her boyfriend are telling the doctors everything they probably should—albeit each of them for an entirely different reason. I’m also not sure either is calling between appointments if something happens—again each of them for an entirely different reason. I also know that often these days the medical care you get is only as good as 1) the care you demand and 2) the care you are willing to accept. I've also learned that doctors aren't mind-readers and usually have tons of patients so it's risky to assume if they didn't ask about something, it's not important.


I do appreciate the suggestions about how to help out. Unfortunately, in this particular situation doing those sorts of things hasn’t worked out too well, as least so far. The boyfriend resented it when I brought over a cooked meal (so far my friend doesn’t have swallowing issues but I made food that was easy to cut up with a fork since she can use only one hand.) He said it meant I thought he couldn’t make meals himself. He also said he knew better than I did what my friend liked to eat. (That may be true but it was only one meal!) And once when I swept the kitchen without asking, he said it meant I thought the house was dirty. (It WAS dirty—but so is my own sometimes as he knows.)


It’s not just me who has had that kind of experience---many other friends have too--- so please don’t assume it’s just something about me. Although I haven’t been told this (yet) some friends have been told by the boyfriend that their efforts to do “household” things for my friend that she can’t do herself anymore or can’t do without expending great effort and energy (like those I’ve done, or offer to shop/run errands, or offer to do laundry) have made my friend feel more disabled which was obviously not their intent. (My friend has been on SS disability for about 6 months so she IS disabled but no one wanted to make her feel worse.) When we ask what we CAN do, about all the boyfriend has indicated would be helpful now is money. But neither I nor her other friends are able to give away much money because of our own financial situations. And I honestly don’t think they are in dire financial straits right now—I think the boyfriend’s concern is more about the future and all the unknowns. But we feel sort of stuck. While $5.00 is enough to buy ingredients to make a very nice meal for two people with left-overs, or is enough to pay for gas for a short shopping trip or to run a few errands, it would seem highly insulting to hand over $5.00 in cash during a visit. Am I wrong about that too?
 

zoohouse

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I understand your concern. My husbands AFO when he was still walking did not make his leg longer, and we tried 2 separate ones. He did eventually get another for his other foot, but did not like wearing them much. He progressed fairly rapidly so didn't get to use them much. Now he wears splints so that he does have foot drop, which causes him a lot of pain. They are the sheep skin type, that protects his heels from pressure sores. He wears socks under them during the day, and bare foot at night. They also help to keep the blankets from pressing his feet down. Before he started wearing them I made a blanket cradle that took the weight of the blankets off of his feet.

I am sorry that your friends BF is having a hard time accepting help. I often feel awkward when people ask what they can do to help, but because I am his sole care giver have had to swallow my pride. I have been a fiercely independent person, and have suffered from excessive pride in the past, but God has faithfully helped me with that. Today I accepted a couple of hours of house work from a friend from our church. Meals have come that have blown me away, and have helped immeasurably, especially for my husband as my cooking is just adequate.

Maybe is male pride is stronger than mine, so you may never make any headway. Try giving him compliments on being there for her, and for all the things he is doing. Maybe ask your friend if you could take her out for a girls night out, but use a wheelchair so she doesn't get too tired. My husband loved to go to Costco, before he was in his wheelchair, and was using a walker, as he could ride the scooter and feel so much more independent. We had great fun, and laughs, always followed by a hot dog, and soft serve ice-cream. My son called a couple of weeks ago, and told me to arrange a girls night out with my friends or sisters, and he would come over and make supper, watch sports with Tim and later put him to bed. Tim loved it, and I had a greatly needed break out. Maybe you could do something similar saying "I notice how much you do and give so that ________ is looked after. How about you go out and do something for yourself with your buddies and ________ & I can watch a chick flick, and have an easy meal."

Thank-you for caring for your friend, I am sure she does appreciate it. It has been hard for my husband to be so far from his friends and family, but they never came over to even help him do groceries when he was on his own. So I appreciate that you are a good friend and haven't shied away, avoiding the difficulty of watching someone you care about deteriorate. It is just her body, not her mind and soul.
 

lgelb

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This is where you might try "I" statements so that he feels less threatened -- "I want so much to be there for you guys and I would feel so guilty if Mary thought I hadn't been around -- could I come over and watch a chick flick with Mary, and I'm sure your friends would love to have you come out with them..."?
 

affected

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I will gently say again - a specialist needs to work this out with your friend.


Any one person here can say that 'such and such' a 'substitute any piece/brand/type of equipment' worked brilliantly, and then another will say the same thing was terrible for them.

So we can't really answer this - we can't see what degree of mobility issues your friend has, how much spasticity is involved, how any balance issues affect this, how the feet are behaving, how the knee joints are involved or the hips joints, and how symmetrical are the different issues, and how she can react if she begins to lose balance. This is what specialists do and then work out for example: do they need a cane (my PALS can't use a cane, his hands are claws, but many PALS do), or a walking frame, or a pwc, and is this hand or head driven.

I hope you can understand that as a friend you may look at her and think these are the crucial issues, but let me tell you as a carer of my husband: we can work out a solution to some kind of functionality issue and 2 weeks later it can change and we are looking for another solution. It's not as simple as asking us on this site for a solution that will make some long term difference. If that sounds fatalistic, then I prefer to think of it as realistic. This is, tragically, a progressively deteriorating condition and we grieve this every day with our loved ones, and spend as much time as possible relieving by massage, talking with, laughing and crying with, and doing as many things as possible to make life as comfortable and enjoyable as we can. My husband has had some quite serious falls involving ruptured tendons, stitches, broken bones, fluid lumps and bruises. He wants to take risks and hates equipment and supervision.

You sound like a truly good friend.

What I will say from my own situation is this - I've had so many friends offer to help with so many things and I have knocked them back because my husband gets so upset. He becomes so depressed when people come over wanting to help (and I actually want them to) but he is just reminded of all the things he wants to do that he can't do now.

Now that he is barely mobile at all, and truly cannot do anything at all outside, I am finally accepting some help (working bees are great for me as so much gets done, and he only gets really upset one day for all that combined help).

We all cope differently, and I would urge you to just keep contact with your friend. Spend time, or take her for a drive or to a movie or something, and maybe in a little while longer the BF will start to appreciate some help with practical things.

I sure wish there were easy, magic answers!
 

Barbie

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Hi Lizzie, Not all PALS have braces or AFO, some get one, some get two, some have them for the hands, some for the legs. It really is not a simple thing to understand for anyone. the tech that they talked to is trained in that area, and if referred by the ALS clinic, has a good understanding of ALS as well. The AFO would be based on the recommendations of a PT/OT. My husband was not a candidate for AFOs on his legs. I asked, but the PT told me something about his spasticity was too pronounced. It was a long time ago, so I don't remember all the details. he did have splints on his hands, but hated them and they went in the back of a drawer somewhere a long time ago. BTW, the twisting of he foot is common as the muscles contract, especially with spasticity. You can stretch it all day, and it will still curl inward when you let go.

A good option for her might be a small scooter if her arms are weak. you are correct, falls are not just dangerous but can easily lead to death. most folks here once they start falling order the PWC. My husband would try to walk and he also had weak arms so he could not use a walker very well. after a couple of bad falls we bought a scooter and he loved it. in the house and around town. it made the transition to PWC easier to accept as well, but the scooter is more common and accepted.

Have you asked her all the things you have asked us? because if you did and she didn't want to pursue the other brace, then you need to drop it.

What a shame that the BF is so butt headed. He needs to understand that caregiver burnout is terrible and very common. He must be crazy also to turn down house cleaning (LOL)! The money thing is weird and awkward--perhaps next time you are over there, say "Bob, I really want to help what can I do?" if he says they only need money, I would ask if they were having trouble paying specific bills. if he just wants money in general, then I would call him on that. Let him know there is a website called go fund me dot come where he can ask for donations, but you love your friend and want to do something tangible for HER, and give him a break as well. There is no shame in accepting help, but it is hard for some people so don't give up. I don't know how you can convince him to let you help, but unless your GF has FTD, then just ask her what you can do for her.
 

Vincent

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I have worn an AFO for a little over a year, and have made some tweaks to make it work better for me. First a confession, I have worked making artificial limbs and braces for most of 30 years now. Here's some things to try to deal with length issues. First thing is to take the insole out of the shoe on the brace side. If you need more put that insole into the opposite shoe. Still need more, add firm padding under the heel of the un braced side. The brace adds length to one side. So in my case I need to take out the insole under the brace and add 1/4 inch under the other heel. Your brace will also work better with a particular heel hight so try different shoes. Hope this helps.
Pax vobiscum.
Vincent
 

LizzieII

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Thanks all for the ideas and tactful education attempts. You’ve given me new ways to think about my own motives (seeking magic?) as well as the BF’s possible “male pride” and the dynamics of my friend’s relationship with him (is he objecting to help because my friend doesn’t want it but isn’t willing to tell us?)

Barbie, I haven’t said much about the brace. I feared intruding and I knew little about AFOs so I posted here for advice and info. I’ve listened to my friend talk though and she says since the brace technician said EVERYONE who has two AFOs HAS to use a walker, she won't ask about a second AFO, doesn’t plan to talk to her dr about trouble walking (unless he notices) and apparently won’t ask anyone if the one AFO she has fits correctly (I assume bc she doesn’t want her walking examined for fear of the walker issue but I don’t know that for sure.) Some here have said since she was referred to this brace shop by an ALS Clinic, they know what they are doing, But this technician offered to measure my friend for a WHEELCHAIR while she was there since she’d need one eventually. That didn’t seem reasonable when fitting a first AFO and added to my concerns about this tech’s competence. Also, from reading older threads here it seems many PALS with AFO prescriptions have been given some choices at brace shops in the type of AFO and some have had to have many adjustments made to what they got. None of that was offered to her. It was pretty much “this is it—you need to get used to wearing it no matter how weird it may feel.” (I will suggest Vincent’s fix—thanks!)

So far as her other foot goes, Barbie----I’m not sure I understand when you say “twisting of the foot is common…especially with spasticity. You can stretch it …it will still curl inward when you let go.” Her foot is pointing out, not in, when she walks and the ankle is bent in to the middle of the body---it doesn’t look like a cramped up or spastic foot—rather it looks EXACTLY 100% like pictures of over-pronated ankles/feet. I know for non-ALS patients, over-pronation often can be improved with a shoe orthotic (not even a full brace although she may need that.) Although there are lots of reasons for over-pronation (including weakness in particular muscles), according to several medical sites, one documented cause when it occurs in ONE foot only (as hers apparently has) is leg length variability. Since the brace made her other leg longer, it certainly seems possible this new issue with her un-braced foot has been caused or worsened by having a brace that is “too tall.” The sideways foot is not being dragged along because it’s weaker—that leg and foot are clearly stronger than the leg and foot with the AFO. I know I’m not a professional. But it sure seems coordinating walk motions would be hard since not only are her legs of noticeably different lengths w/the brace, now her feet are pointing in different directions (AFO one is pointing to 11-12 on a clock face, the other to nearly 3) Perhaps this IS a consequence of disease progression and nothing can be done to help her walk more safely but I keep thinking, what if it’s not?

I agree 100% with Tillie and others---My friend needs to have her walking professionally evaluated. I thought that before I posted. But I don’t think that’s happening and I’m not sure how to encourage that to happen so that’s why I’m frantic. I MAY be wrong, but it’s my strong impression my friend is not seeing an OT/PT on a regular basis either. (She just sees an ALS dr—probably a neurologist-- every 6 mon. for 30 min max.)

But 4-5 falls and 2-3 ambulance visits to the ER (because of possible head trauma—thankfully none detected) when wearing the brace and no falls during the same period of time when not wearing the brace…That makes me crazy and it’s hard to stand by. And yes, as some have suggested my concern probably has risen to the level of an obsession with brace issues. Of course, it’s NOT all about me and please don’t think that’s what I’m saying---but if she has a fall with broken bones or head trauma, I’ll feel so guilty I wasn’t able to DO something/SAY something they’d accept about at least ASKING about a second AFO and/or ASKING if this one fits right before that happened because it seems to me its only a matter of time. A person can’t repeatedly fall on hard surfaces (she’s fallen on concrete outside) and not get seriously hurt eventually (and even minor injuries apparently can be a problem with ALS). But as all of you have said, it’s up to them in the final analysis.

Thanks again for all of your help. You’ve given me much food for thought. I hope you all have many good days in 2014.

LizzieII
 

affected

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You sound like a great friend.

Believe me as the wife of a PALS I live constantly with concerns that he is not allowing things to be addressed the way I would if it was my choice. Frustrating indeed.

Keep being that good friend, and don't ever blame yourself if there is a fall.

My PALS still insists on using what very limited mobility he has and he puts both me and him at risk at times because his likelihood of falling even with all assistance is high. One of the hardest parts of this for me is that I have been instructed by several of our support health professionals that if he does fall whilst I am walking him, I have to just let him go down. If I try to catch him and go down with him and am seriously injured, what do we do then? I can't tell you how much that plays on my mind - the guilt I would feel at letting him fall, but the reality is that we simply won't cope if I break a hip too.

So lots of hard choices, no easy answers, just keep loving and being there.
 
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