When do you have to consider assistive equipment?

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Hewitt

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My sister was diagnosed with ALS in November, and it seems to be progressing fairly quickly (in my limited understanding of the disease, at least). She has started falling hard fairly regularly, and each time she has fallen flat on her face, sustaining cuts and bruises (no concussions, as far as I know, but she has smashed her glasses several times, which is scary). She has always been fit and active and loves to ride her bike (alone) for miles, but I wonder at what point does continuing to walk or bike become too dangerous? She walks about a mile to work every day, and while she falls at work and at home, too, the mile-long walk seems to be when she falls the most (her left leg weakens and then she trips). I see that many people advise ALS patients to carry a cell phone at all times, and she has been very reluctant to spend the money to get one, but it's beginning to seem like a necessity for her. It's odd, though - in the face of this frightening disease, she has become very stubborn about making sensible changes in her life. It may just be that as she feels her life spinning out of control she is trying to reassert her independence. Perhaps it takes a really major injury to make the need for lifestyle changes clear, but I hope she will adapt before she gets really badly injured. Any advice?
 
Hi Hewitt. If your sister has fallen quite a few times, she has already gone PAST the need for some assistive devices (MAFO for foot drop? Walker, etc.). Has she gone to any ALS clinic appointments? You state -" It may just be that as she feels her life spinning out of control she is trying to reassert her independence." That may be part of it, but, do you think she may have FTD (frontal temporal dementia)? Does she seem to lack empathy & act paranoid? Does she resist all attempts at discussing the reality of her situation and frequent falls? You mention that she has become very stubborn ...... is that a recent change in her mentality? Perhaps you are right that she is just trying to assert her independence against this awful disease, but she seems to be in denial of the reality going on and possibly has FTD. Forum members with much more experience than me will most likely weigh in on this one.
 
Hi hewitt

walking is dangerous now - I'm sure that is obvious to you? I have had two PALS I know die in the past few months from head injuries sustained in falling. That's how it is - they cannot break their falls and head injuries can be fatal.

Broken bones are also common, and soft tissue or tendon damage often will never heal again for them.

She may be in some denial, she may be angry and frightened, she may have some FTD involvement. Her attitude to safety, to the point of not even being willing to carry a phone are a bit of a worry. Maybe you can get a discussion on this going with her at an appointment with her doctor? Get it in the open with a health professional.
 
Hewitt, I'll echo what's been said already--your sister is past the point of needing assistive devices. If she is seen an an ALS clinic she will see people who will stress this and advise her on what to use. Yes, our PALS do get stubborn and refuse to use those devices quite often, and all to often they sustain serious or fatal injuries as a result.

I don't envy you trying to make this free spirit safe. It's a constant struggle because each added device is seen as a loss rather than a help.

Becky
 
Yes, it does seem obvious to me, too, Tillie. I was with her once when she suddenly fell flat on her face for no apparent reason, and it was shocking, because she couldn't brace herself at all and hit the pavement so hard. It's amazing that she didn't do more damage - she just had a black eye and some lacerations, but a doctor friend who was with us suggested that she get an x-ray to rule out an orbital fracture (she refused treatment). I think she's on the cusp of change because she has always biked long distances (and continues to do so), walked for miles and swum laps to stay active, and while she can still do these things, the random falls are posing more and more of a problem. I think the realization of how dangerous this could be just hasn't set in yet, and when it does, she will be really grief-stricken, because exercising is one of her chief pleasures in life. She is definitely in denial about what could happen if she fell in an isolated area where there might not be someone available to help. Her teen-aged boys and husband all have cell phones, for heaven's sake, so I may just get one and send it to her. As for whether she is being evaluated at an ALS clinic, yes, she just had her first appointment at a well-regarded clinic last month. I don't think she was completely honest with the doctor about how often she was falling, though, so I contacted him, and he has scheduled a return appointment next week to discuss the matter. Thanks for your response!
 
That's very well put, Becky! She definitely is a great free spirit, and I hate to quash her joie de vivre, even to make her safe, but it's necessary if we want to have her around for as long as possible. You're exactly right that she regards any sort of assistance as an intrusion - every a cell phone - and I can only imagine what she would say about a cane or other walking aid. The irony is that she can out-walk and out-bike me any day, and she has been so athletic that it will take a major about-face to admit that she has a growing disability.
 
Thanks, Buckhorn. I don't think she does have FTD, although she is showing definite signs of cognitive decline. There is no loss of affect or paranoia - just a willful independence that is an intensification of how she has always been. At the same time, she is so affectionate and loving that it is just heartbreaking. She has always been that way, but this diagnosis seems to have freed her emotionally in some ways, and she takes every opportunity to express her love and gratitude for the people she loves. I hate this disease!
 
Hewitt, you are right to be so concerned about your sister falling. I had a similar situation with my husband. He somehow felt that he was "giving in" to the ALS if he used assistive equipment. We had a walker in our house for over 6 months that he refused to use. He had multiple falls, some with serious injuries. Last June he fell again and he claimed he was fine except for facial lacerations. After several days of headaches we went to the ER, where he had a CT scan. It showed an acute bleed in the brain from the most recent fall but also evidence of an old bleed from one of his prior falls that we never suspected caused a serious head injury. He ended up in the hospital for 10 weeks and almost didn't make it.

Please emphasize to your sister how dangerous a fall can be for her. Tell her, like you stated here, that you want her around as long as possible.

Sharon
 
Thanks, Sharon - that's a very good point. I have wondered if she could be sustaining some damage during these falls, but, however scarred she looks outwardly, she seems to shake them off and just get back to her life. She's really brave, and I don't want to scare her unnecessarily, but I may talk to her husband about it when he gets out of the hospital. I imagine the doctor will talk to her about this next week, but it couldn't hurt to reinforce the message.
 
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