Preventing Falls: Empowering Strategies for FA Patients

Whenever I stand, I grip onto something sturdy to stabilize myself like in the picture. That’s why I feel like training my upper body strength is just as crucial for mobility as practicing balance.

As someone living with Friedreichs ataxia, falls can be one of the most difficult parts of dealing with this disease. I was reminded that this past week when I fell while walking to bed and hurt my knee.

Right now, I’m in a tough situation where I want to keep walking as long as possible, but declining balance and mobility often means increased risk of falls. I don’t want to become too reliant on my wheelchair and lose the ability to walk sooner, but I also want to prevent falls so I don’t get hurt like I did a few nights ago.

As I discussed in a post at the end of last year about my strength training (that I am still doing), building muscular strength through exercise, weight lifting and nutrition is a great, probably even the most effective for me, way to prevent falling and help you recover when a fall does happen. Specifically, exercises that engage my core and work my lower body at the same time are so important. A workout I do where I go slowly down to the floor and then use a bench or a box to push myself back to a standing position is a good one that’s very applicable to everyday life.

However, no amount of physical training can “fix” FA and keep you from falling.

The most important way to manage FA is to prevent falls, but you can’t always prevent falls. So, I’m going to list the best ways I deal with a fall – physically, mentally and emotionally.

1. The Physical- Balance the use of walking aids appropriately.

It’s tough. You don’t want to use a wheelchair all the time, but your body doesn’t allow you to walk everywhere. The key is to find a healthy mix between doing as much as your body is capable of without pushing too far – that’s when falls happen.

It’s different at unique levels of FA progression, but I’ve gone through several myself. At one point, I walked without any help most of the time, but my parents slowly helped encourage using a walker or wheelchair for long distances at the beach, theme parks, vacation, etc. Then I walked without help around the house and used a walker when I went out. Now, I use a walker around the house and for shorter outings, and I use an electric wheelchair for most other things when I have to go a longer distance or the terrain isn’t level.

Some people also use a manual wheelchair because they’re not as expensive as a power chair, and they still require you to use your own strength to push. That is helpful for some, but for me, the power chair allows me to do more independently (carry things, open doors, get around quicker) while walking helps me maintain my body’s function.

Basically, I don’t recommend going to a wheelchair full-time right away, since not using your abilities will cause your body to lose its strength and function more over a shorter amount of time.

But, using all your energy to walk can be exhausting if you do it too much, and if all your focus goes to mobility, that takes up energy that could be used to do tasks safely and independently. Walking and focusing on balance also makes it harder to be at your best socially and be very conversational. It’s all about balancing both needs and listening to what is most important to you.

I try to pick specific activities I do each day/week where I use my walker and work my muscles a balance. Those are usually the gym, restaurants, and anything where it is easier to navigate and I have ample time (since I move slow).

Oppositely, I have certain places where I normally stick to my wheelchair, which locks in my new wheelchair-accessible van (blog about that coming), making it easier to take literally anywhere. Those are usually doctor’s appointments, sports events, and anywhere that’s longer/tougher to navigate.

Trust your own judgement, and don’t let outsiders opinions affect if you use a walking device or what you use!

2. The Mental- Be mindful of what situations and environments you place yourself in.

This goes back to trusting your own judgement. If you feel unsafe or uncomfortable somewhere, first ask yourself how you can make that environment how you need it to be.

Advocate for yourself. Don’t be afraid to change walking aids, ask for help or get things rearranged. Even if you CAN make it work as is, there’s no reason someone with a disability should have to struggle when changes could be made. A trap I’ve fallen into a lot is wanting to prove to others that I don’t need accommodations to function, but as I’ve matured I realize all I’m doing is making things harder for myself.

For example, recently I’ve started seeing a chiropractor. The office entrance has a decently steep ramp to get up and I don’t feel comfortable walking down it. When I used my walker, I had to ask a staff member to walk to my car with me and hold my walker steady while I went down. It was a hit to my pride, but it was a simple fix that the employees didn’t mind doing to help keep me safe.

Another different example is going to power soccer practice. Before I got my van, I always walked a decent distance into our locker room to get in my soccer chair. I could do it, but I was often running a few minutes late because walking and unloading my walker added an extra 10 minutes or so into going in and out of Beard-Eaves Coliseum where we play. Once I got my van and was able to easily go in my wheelchair, I do that because the stress of trying to walk quickly because I want to be on time is not worth it. Ever since I made the change, I’ve been EARLY to practice every time. It feels amazing, and it’s so worth it!

Mentally, you have to make level-headed decisions in order to put yourself in position to avoid falls. Listen to advice from those who understand your situation, but be honest with yourself and trust what you know when all is said and done.

Here’s a new segment to my blogs called SUPER SCHOONER: When I fall at home, I call Schooner over and pet him until my heart rate goes back down, then I get up when I feel ready.

3. The Emotional- Don’t let the possibility of falling keep you from living life to the fullest.

Early on in my FA journey, I would get so discouraged after a fall. I’d beat myself up and feel so embarrassed. It would ruin the rest of my day. I would think “Does this mean I have to use a wheelchair now?”

The short answer is no, not right away. Falls are just a normal, unfortunate part of life with FA. Like I said, you can’t always control it or prevent it. The sooner you accept that, the less emotional scarring a fall will leave.

Falling once or twice doesn’t mean you can’t walk or stand anymore. Ask yourself what caused the fall and what you might need to do differently so it doesn’t happen again. Sometimes, it’s just having an off day and you just need to rest and try again when you feel stronger and more energetic. Some days you might need more support than others, but an adjustment doesn’t always have to be permanent, either. Using a wheelchair once doesn’t mean you’ll have to use it all the time.

At the same time, allow yourself time to feel frustrated. Falling sucks, and if you’re anything like me, it makes your heart beat out of your chest and all your muscles tense up like they’re in survival mode. Take a minute to reset your nervous system and breathe deeply: four seconds in your nose, then pause for a second, then exhale out your mouth.

Once you’ve had a moment to reset and process, then you can decide how to go on.

Don’t let a fall ruin your day because if you sit there and wallow in self-pity, it will. For example, if I fall but don’t hurt anything and can get back up on my own, I’ve found it’s best to still carry out my plans – go to the gym, go to the game, get dinner with friends, go visit family. If you keep moving, it really does help you recover mentally and find your confidence again too. Just listen to your body because other times you need rest before you continue with your plans, and if you push it you might end up falling again.

No matter what you decide, it’s crucial that you don’t let the fear of falling keep you from doing what you love. No matter how it looks, keep showing up to life.

Even if it’s in a wheelchair, keep showing up. Even if you fall, keep getting up. At the end of the day, it’s about doing what you love with joy for as long as you can. How you get there is just part of the story.

“If you can’t fly, then run. If you can’t run, then walk. If you can’t walk, then crawl, but whatever you do you have to keep moving forward.” — Martin Luther King Jr.