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Hewitt

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My sister just had her 14th severe fall this weekend, and each time she falls with no warning and lands flat on her face. She has sustained bruises and lacerations previously, but this time she fell hard enough on her temple to make her woozy and disoriented (but not unconscious), so they took her by ambulance to the hospital, where she was x-rayed, stitched up and released.

Her husband is looking at soft helmets for her to wear for protection, but I'm beginning to wonder if any helmet is going to be sufficient to protect her against these sudden drops, especially when she lands on hard surfaces. She seems to have no awareness that this is going to happen, nor does she have any sensation of weakness preceding the fall. It just happens.

The local ALS chapter is coming to evaluate the house for safety today, and I'm glad they will see her swollen black eye and stitches, because they may be able to recommend better safety measures. I have read people here say that you should avoid falls because they can lead to a progression, and I wondered if anyone understands the mechanism behind this. Does the trauma sustained in the fall accelerate the progression, or does the fall itself represent some sort of underlying progression?

My sister has always been active and will not readily consent to limiting her walking, but I fear that the time for this may be imminent. I guess you have to weigh how much you are willing to give up to protect your safety. Is this sort of scenario typical of other ALS patients?
 
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Ells

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Yes trauma can speed up progression but more importantly, head injuries can be FATAL and we've lost great PALS this way. Soft tissue damage may never fully heal and immobilised joints lead to ongoing pain.

Forget about helmets, your sister should get a PWC. It will actually give her more independence as she won't have to worry about falling.
 

Nikki J

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I know you are dealing with distance, denial and likely dementia. As Ells says this is not the answer and I am quite sure they have been told this by their providers

I am very very sorry that you have been dealt this hand as it is excruciating for you as a loving sibling. You can't force anything and their poor decisions are not your responsibility. If you have told them what you know and think you can do no more

Sorry again
 
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Hewitt

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I've got my hopes up that the ALS chapter and her physical therapist, who will visit today, will try to talk some sense into my sister and her husband. She also just got a prescription for Ambien to help her sleep (two Trazodone weren't enough, apparently), but it worries me to death that she is still drinking around the time she takes the Ambien. I know this is extremely dangerous and may only make the likelihood of falls and cognitive decline greater. You're right, Nikki - there is only so much I can do, but it is terribly hard to watch this from afar. We are able to Skype frequently now, so at least I "see" her often, but I have a really heavy heart about her future.
 

affected

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Multiple serious falls when there is some dementia is far more common as they lack the capacity to understand the seriousness of the issue.

It can speed progression as damage to muscles will probably not heal, and damage to joints will leave pain for the all the time they have left.

As noted death is too common. You are right, PALS usually cannot do anything when they fall and usually land hard on their heads.

It's very difficult to watch and not be able to get across the importance of safety, both for them and for the family watching the suffering.
 

lgelb

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Trazodone, Ambien + alcohol and refusing a wheelchair is not a recipe for long life. Gather those rosebuds, Hewitt, and I'm sorry.

I'd still try to grab the third party she respects the most + her husband to do at least a manual wheelchair intervention (a power chair in her hands seems chancy but she doesn't sound like an attendant control type, either). Is there a favorite destination to use as a lever? The next time she falls might be a good opportunity, sadly. If she is cognitively impaired, she may not listen to reason, but sometimes there is survivalism beneath.

Best,
Laurie
 

Hewitt

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Trazodone, Ambien + alcohol and refusing a wheelchair is not a recipe for long life. Gather those rosebuds, Hewitt, and I'm sorry.

I'd still try to grab the third party she respects the most + her husband to do at least a manual wheelchair intervention... Best,
Laurie

That's a very sobering assessment, but I know you may be right.:sad: I have contacted all of her doctors privately to alert them to these problems and questionable choices, and I know they are sympathetic, but I guess there isn't much they can do, either. She seems beyond making sensible choices for herself, and I'm just hoping that the increasing number of people evaluating her at home may see the potential for injury here and encourage interventions that she and her family have been unwilling to make to date. I can only hope, I guess...
 

swalker

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Hopefully, her resistance to using a wheelchair is caused more by denial rather than dementia. If that is the case, perhaps relating my experience could be of some help.

I did now want to get a wheelchair (who does?). My doctor and I discussed a wheelchair for 1 solid year before I made the appointment to get evaluated.

After making the appointment to be fitted for a wheelchair, I did not want to go through with it. I almost cancelled the day of the appointment. I am so glad I did not.

For me, that appointment was a life-changing event. I was offered a selection of over 30 wheelchairs to try out. I sat in the most appealing one, and within a minute I was a changed man. Instead of having to think hard about spending the energy to walk some place, I just pushed the joystick. Instead of trying to engage in a conversation without looking at someone (because it is hard to turn my head), I just touched the joystick and pivoted in their direction. It was revolutionary.

Getting a wheelchair does not mean you have to give up walking. I have had mine for over 18 months and I can still walk short distances in the house. But, I can and do use the wheelchair extensively (I have over 1,000 miles on it now). Doing so saves my body from falls, but also saves my energy so that I can walk around the house some.

My wheelchair provides such wonderful comfort and support for my body that I am much fresher after sitting in it for a few hours. A lot of that comes from picking the right wheelchair and seating system and then adjusting the seating system carefully to my body. The adjustments took a couple of months to get just right.

That is why I encourage everyone to get a wheelchair early. Mine took 4 months from ordering it to delivery and then another couple of months to fine tune. I was very fortunately to still have enough mobility to get through that period.

Having a wheelchair has allowed me to continue to do some of the things I love. It gets me to the ski area in the winter so I can go skiing in a biski. It lets me roll along the backcountry trails in Yellowstone. It allows me to go for evening walks with my wife. It lets me get out of the house and clear my head. Surprisingly, it allows me to sit through a sermon at church in absolute comfort. No more pews for me:)

Perhaps sharing my experience with her will be helpful. If so, please feel free to do so. Let me know if you have any questions at all.

Steve
 

Hewitt

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Thanks so much for relating your experience, Steve. I will pass it on to my sister and will hope she may begin to see the possibilities in being more safely mobile. In addition to having some dementia that makes it hard for her to make wise decisions about her safety, I think she is also still grieving the loss of her former active life and reluctant to give it up. Hiking and biking have always been her favorite forms of recreation (to the point of being a near-obsession), but if she hears that you've used your PWC in Yellowstone (one of her favorite places) she may begin to see assistive equipment in a new light. I hope so! Thanks very much, and all the best to you--
 

affected

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FTD affects the persons ability to relate cause and effect together. So getting the person to see the importance of safety and what impact falls can have can be very difficult.
 
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