ALS and falls

[Dustin Kassman]

I started with a cane and then moved to a rollator, which is a wheeled walker, as my balance deteriorated. I also wear an ankle brace due to foot drop. It is important that when someone is assisting you while you walk that they know the proper techniques for spotting you. Your occupational therapist can train you and your assistant.

I found this list in my reference notes:

Progressions of mobility
– May or may not need assistive devices at some point
+ Canes, walking sticks, wheeled walkers, legged walkers, lightweight transfer chair
+ Upright walkers may not be covered by insurance
+ Braces for ankle weakness/drop foot

Wheelchairs
– Having a wheelchair doesn’t automatically mean you have to use it continuously (you can use it to help conserve those “energy dollars”)
– Insurance will only pay for one wheelchair
– A tilt feature is important so you can take pressure off of your bottom
– Team Gleason will pay for a lift accessory that will raise the seat so you can talk to people face-to-face. They will also pay for attendant’s controls that are mounted on the back of the chair.
– Recommend getting wheelchair before you absolutely need it (gives you time to get used to operating it
– Most loan closets have power wheelchairs that you can borrow to try out or use short term if you are traveling.
– I use a lightweight transfer chair when traveling.

[MaryConnolly]

Dustin–what is the make and model of your lightweight transfer chair that you use for travelling?

[john hamilton]

Thank you Dustin! Very helpful data for getting started.  I can still walk.  No falls….yet.  But do wonder how long it takes to get a chair once ordered.  Nice to know that  much of the cost will probably be covered, one way or another.

Best.

[Kathy stitz]

Thank you for this information Dustin.   Best wishes to you.

[Lisa]

Kathy, my ALS started to affect my balance before anything else. My PT suggested trying a walking stick/trekking pole instead of a cane to start. It helped tremendously with my balance and I liked that it wasn’t a “cane”! I just ordered a set from Amazon. Also, be sure your neurologist has evaluated you for foot drop, that is usually what causes the loss of balance. a light weight AFO may be in order. I resisted getting one, but when I finally gave in it made a big difference in my balance and energy consumption when walking/standing.

I was able to use a walking stick with my AFO for 18 months before I just recently moved on to a collator (wheeled walker). Again, I resisted moving to the collator longer than I should have and now I am glad I did!

I also have a power wheelchair on loan from the ALS Association’s Loan Closet. I have used that since I was first diagnosed for any trip when I know I will have a lot of walking. As Dustin stated, it helps with conserving those “energy dollars” and actually gives you more freedom than you realize!

[Kathy stitz]

Lisa, thank you for the information and for your suggestions.

[Gunnar Klintberg]

What is a weight AFO?

[Lisa]

Gunnar, the carbon fiber AFOs weigh literally ounces! Even someone as sensitive to weight as an ALS patient can barely notice the addition.

[Kathy stitz]

Gunnar, was your question: What is an AFO?

[Duane]

Your ankles may weaken and cause you to fall. I wouldn’t resist using a walker or a rollator to try to prevent falls in the future.

[Kathy stitz]

Thanks so much, Duane.

[Marianne Opilla]

In early stages of losing balance i used a pretty carved walking stick from Amazon.  In the yard i used my ski poles so i could dig in the grass. That lasted maybe 2 months, and i needed rollator i ordered from walmart.   Drive/nitro brand.  Ive been using that for about 8 month only around house.  I have a push wheelchair for going out.   I got my power wheelchair from my chapter.  So far I haven’t used it.

i have foot drop in both feet. Never used AFOs.

[Kathy stitz]

Thanks for your post, Marianne.

[Gunnar Klintberg]

Yes, what is an AFO? I don’t think you should use these abbreviations. It scares people away like they don’t know anything about ALS and they are stupid.

[Dagmar]

Gunnar,
AFO stands for “ankle-foot-orthosis” which is a brace for the ankle/foot area to provide support. They come in many styles, depending on what the patient needs. Here is a quick look at them: AFO images

Maybe this blog post I wrote about mine will be of help to you: How I Learned to Like My AFOs

[Gunnar Klintberg]

Also, trying to print this train of good suggestions. The print comes out almost unreadable. What might I be doing wrong?

[Dagmar]

You may need to copy the text and paste onto a Word document, then print that.

[Lisa Brown]

AFO = Ankle foot orthosis   These take on several forms – plastic, carbon fibre, dictums which is fabric and uses your shoe laces to hold up your drop foot, to name a few.

In my case my leg has weakend up through my hip and I can’t lift my knee high enough to stop my toes hitting the floor when I step, the AFO helps tremendously.

[Jennifer O'Brien]

Hi, Kathy,

I’m sorry you had a fall, and hope you’re feeling OK. Foot drop certainly can cause you to trip and fall, but I have fallen many times in the last few years simply by leaning inadvertently to only a minuscule degree, so unexpectedly. A neurologist friend said it indicates that the nerves in my feet aren’t correctly signaling the brain. I mention this only to urge you to be aware of this possible risk.
<div>I use a <b>Nitro Euro Style 4 wheel rollator,</b> which I got through Amazon, around the house. (I splurged and paid out of pocket.) I use the seat as a tray, e.g., my laptop, for moving things from room to room. It also has a great built-in bag at the front for transporting things. Its very sturdy and helps prevent falls. Its only limitation is that it is too heavy for me to lift myself into the car. Others can lift it, but its not light for them either. For that reason, I splurged (again) and also bought an <b>ultra light, carbon based rollator called ByAcre</b>, from Sweden. I returned the “organizer bag that hooks in the front because, while stylish, it kept slipping off. I can easily whisk it Into the car. The only limitation is that it is not as sturdy as the Nitro. I’m very light – 5’7, 120 – and feel like that’s a good weight for it, though it looks on their website like bigger people use it, too.</div>
<div></div>
<div>I want to mention another product that could be great if you maintain strength in your legs and have the space to store it and access to an outdoor environment to use it in. It’s called the <b>Alinker</b>, from Canada. It is a three-wheeled walking bike that has been promoted by actress Selma Blair, who has severe MS. I have not bought one because my living arrangement would make it challenging to use, but for people with slower progressing ALS it could be so liberating for getting outside on paved or dirt paths. I know ALS patients in the UK, at least, have done fundraisers via Alinker to purchase them. https://www.thealinker.com</div&gt;
<div></div>
<div>Good luck to you!</div>
<div></div>
<div>Jennifer</div>

[Kathy stitz]

Thank you for your suggestions, Jennifer, and best wishes to you.

[Dianne]

My husband has fallen more times than we can count. I purchased an inflatable twin bed which has been the best solution. Must be able to reach 24”, maybe $200, I bought a Bridgestone. Roll him onto the deflated bed, turn it on, it raises him up, he can then sit up and, with assistance, transfer to chair or bed.

[MaryConnolly]

Is this a Bridgestone or a Brookstone model. I googled Bridgestone and search results came up Brookstone. Do you have the model number?  Thanks!

 

[Beth Rookey]

Hi Kathy,
Sorry you fell, I hope you’re okay! When I was first experiencing symptoms, I too would fall over when trying to pick up my 1yo son’s toys. He thought it was great fun that Mom was on the floor to play with him! After my dx in October 1992, I had 2 more serious falls – one to my face & 1 to the back of my head – stitches & staples. I had AFO’s (Ankle/Foot Orthotics) made that helped me walk, drive my car. When I didn’t wear them, my Achilles tendons were really contracted; 30yrs. ago I didn’t have the support of the ALS clinic, I didn’t know about PT, etc.

I used my AFO’s then was measured, fitted for a wheelchair in 1996. I have been in one ever since. I still wear my AFO’s daily because when I am put in my w/c I tilt myself backwards & push my butt back with my feet on the footpads! I spent many years being able to transfer with a lift or if someone would pick me up, I could support my weight.

I don’t have any experience with a walker, cane but I also know that if you fall you risk the possibility of breaking something on your body – we don’t need that! It’s another loss of independence & we go through the stages of grief & try to carry on!

[Charles Sutherland & Doris Sutherland (caregiver)]

My husband fell today. This is the first time I actually witnessed a real bad fall. He was diagnosed on 9/14/22, after many years of no diagnosis and continued decrease in his mobility (muscle weakness).  He got out of the car and grabbed his walker with one hand. I heard the fall. He said it flipped. I have never been so scared for him as I was today. We are learning everyday what we can do or should not do.  He is okay. A power wheelchair is our next step. Just sharing. Thanks for listening.

 

[len-jax]

Hi Doris and Charles,

I had fallen many times for various reasons using canes and walkers. Falls are always scary, and I learned from each fall. Tuck, roll, protect the head and don’t try to break the fall with the arms. Thankfully I never had any injuries. I always tried to walk as much as possible with a good rollator to maintain that ability. I am currently in a PWC most of the day except walking short distances to do transfers.

It is wise that you are getting a PWC before Charles fully needs one. I got mine when I thought I would not be able to walk in about 6 months. I was wrong as I didn’t need it for about 14 months. I did use it for outings and appointments to conserve the energy I had. With any new piece of equipment, there is a huge learning curve that goes with it. It is always better to be proactive before the need arises instead of being behind the progression of the disease, playing catch up. If you have any questions don’t hesitate to reach out. Information is the key to staying ahead in the game, we will never win, but it makes one feel more in control.

Len

[MaryConnolly]

I don’t know how responsive your neurologist or care team is, but they should know about the falls. I hope your neurologist is a member of an ALS excellence care team. We are at UCSF in San Francisco, but I’ve found that our care is only as good as our advocacy. There are intermediate steps before a power chair IMO and we have several mobility devices in play. All are portable at this point in our journey. My husband wears an AFO when out of the house to support his foot that has foot drop. In house he uses a 4-wheel rollator (Nitro Drive for a tall person) and lately he has been using a NeoFect foot drop brace to support his ankle and foot when walking around the house. The Neofect is not as cumbersome as his very lightweight Noodle AFO (yes, that’s what it is called so says the orthotist). We also have a Hoyer lift should I need to do a transfer, but we were advosed to get it to lift him should he fall to the floor. A Hoyer works if you’ve got enough space to maneuver it around a person on the floor–no such luck in a cramped bathroom. We’ve called 911 and asked for a “lift assist” and the firefighter/paramedics show up without sirens and blazing lights, check to make sure there is no injury and then lift to standing and then sitting. Your local first responders are part of the care team and they are happy to help–saving you a potential injury raising a loved one from the floor. Wishing you a calm evening on this very long road. The ALS Forum is a great place to get information as is your local ALS Association chapter, iamals.org, everythingals.org, the Les Turner Foundation, and Team Gleason Foundation. Sending love and light.

[Kathleen B (Katie)]

Yes, Mary— a forum like this is SO important to learning things pro-active! ESPECIALLY your new-to-me-info about 1st responders help—VERY 1st time I have seen this and I will definitely share it as well in MI local support groups.  I do hope it works the same way in all states & local communities!  Many thanks!!!

[Nina]

Thank you, Mary. I was told by a local fire fighter with that you cannot call EMS for a fall without going to the emergency room to get checked for injuries. I am happy to know you can call for a”lift assist.” We had many falls (no injuries)  while I was trying to transfer from-chair or bed to wheelchair to commode via transfer board. As my core degenerated the transfer board just became too unstable. We then went to the Hoyer Lift and I have had only one fall, off the toilet. The Hoyer Lift is very useful for picking me up off the floor. Thankfully, we do have enough room to maneuver it when we have needed it .