Adapting to Life with Ataxia
As my Ataxia symptoms began to ramp up, I gradually added more and more things to help me cope.
Until you lose your balance, you don't realize how important it is. I marvel when children or adults bound up or down steps without even holding the rail. Wow! I used to be able to do that. And, I used to be able to take yoga and improve my balance with practice. I could do the 'hardest' balance poses with ease.
Giving up Activities
My first step to adapt was to give up activities .. many once cherished.
I fell off a ladder so I stopped going up on steps.
I had to use a railing to go up and down steps.
My snow skiing kept deteriorating. At first, I blamed it on various things. When I finally realized that it was my balance, I gave it up.
I used to love tennis but after a fall on the court, I had to quit.
For a while, I was able to hike with a hiking stick, but it quickly got to where I could not handle any incline or decline.
I gave up on bicycling after a fall. I bought an adult tricycle which did allow me to ride, but I fell on the trike, and I wish I had gotten a recumbent instead. I was concerned about getting in and out of a recumbent, and that would have been hard. But, I would have felt more secure once in the seat.
I used to be able to walk with friends using two walking sticks. Now, I am too slow to keep up with able-bodied friends.
I've tried many things, and I am only including links for things that have worked out well.
After spilling coffee after painstaking preparation, I purchased silicone lids to help me carry drinks without spilling. These lids have helped, but I now need to brace myself with an arm before I transfer a beverage. I am now increasingly using beverage bottles with screw-on, waterproof caps.
Over the years, I've made many adaptations to support my mobility. In 2015, I went on a trip to California, and I started the trip with no walking aid, but I bought a hiking stick from an estate shop, and I've used one ever since. Like many with Ataxia, I found a hiking stick to help my balance more than a cane. My next purchase was to convert my ski poles into two hiking sticks with Ski Pole Tips. When walking with one or two sticks became too challenging, and with encouragement from my physical therapist, I bought my first rollator (like a fancy walker with wheels and brakes and a seat). I spent a lot of money to get a lightweight rollator. I thought 'one and done'. Hah! My first rollator is now too rickety for good support.
I learned that narrow stairways are best with rails on both sides. And, I now like carpeting as it is much softer when you fall, especially on the stairs. It took me awhile to figure this out, but I now keep a bag hanging from my rollator, and I use it to transport items up and down the steps so I can keep my hands free to use the rails.
I recently remodeled my kitchen, and I installed cork as it's softer yet easy to clean and roll around https://www.dwellsmart.com/collections/cork.
I also started to take baths as standing and balancing in the shower became too difficult. A friend bought me a couple of tools to help me get in and out of the bath. And, I bought a bath mat for more traction. Bathtub Rail and Non Slip Mat. The tub rail is very sturdy. The grab bar I use is suction-based which is not the best, but I'm still not ready to screw-mount through my tiles, but I'm getting close.
In the beginning, I just needed my rollator for longer distances, but I could use the stick for short walks (like getting inside a small shop or restaurant). And, inside my house, I could 'surf' the walls and furniture, and walk a few steps unaided. However, by the end of 2019, I needed a rollator inside my house, and for all trips outside. I bought this rollator for inside my house: Rollator. It's a bit heavy for me to lift in and out of my trunk, but it's perfect for my indoor use.
And, one of my goals is to get through the soft beach sand with my rollator to walk on the hard-packed sand. I just bought a new rollator for outdoor situations. It is still difficult to get through soft sand, but this rollator has proven to be sturdy and lightweight with a comfortable seat. However, I would not recommend it for tall people.
Along my journey, exercise has been challenging, but it is very important. About four years ago, I realized that I could use the weight machines at the gym. Although I needed to use my rollator to get to the different machines, once there, I was able to sit down and did not have to worry about balance for a bit. I also realized that I could 'walk laps' in the pool and use exercise equipment for increased resistance such as these Water Dumbbells. I also use ankle weights and a kickboard, but I'm not as happy with my purchases. These shoes have been great: Pool Shoes.
I've bought a LifePro vibration plate for both some exercise and movement / lymphatic flow. I worry about my sedentary lifestyle. LifePro Vibration Plate. I have to hold on / brace myself, but it's good for movement / getting out of my chair.
I've recently bought a DB Method machine. It is hard for me to get on and off, and it's a bit narrow for my taste, but it has been great for targeting the right muscles for my balance.
My optometrist has helped me with prism glasses which have been helpful to me for reducing double vision. I find the glasses very helpful for driving or going to the movies or a performance. Otherwise, I am trying to see without as I can't help but feeling like the prism glasses will 'lock in' my double vision. I also bought a brock string which I an use to try to practice eye convergence and to track my vision: Brock String.
Driving / Car Adaptations
Driving can by very difficult with Ataxia, and many people get to a point where they have to stop driving. I have been rather maniacal about prolonging my driving ability. Overall, I feel like I have moved from being a 'good driver', like top 10% to being a 'bad driver' in the bottom 10%. To compensate, I am an ultra-conservative driver. For example, I rarely make left turns onto a busy road unless there is a traffic light.
And, I've hesitated to share some of my other driving tips, as I know there is a cost which might make this impractical for many. Being able to continue driving is super important to me, and the costs are worth it. I've done many things to simplify, but the biggest thing which helps me is that I have a Tesla Model 3 (electric car) with Full Self Driving (FSD). As you may know, the technology is heading towards a scenario where no driver is needed. It is not there yet! But, I feel it is a great assistant for steering to stay in lane, slowing down or stopping for other cars or red lights or stop signs. I recently let the car make a six-hour trip, and it drove almost the whole way save a few minutes where I took over the drive. It is much less tiring.
Some other things which have helped me is an automated trunk for getting my rollator in and out of the trunk, a bumper cover for same, gloves to be able to grab hot car in summer, a roof rack for 'grabbing', prism glasses. Even without FSD, the Tesla is a relatively easy car to drive. I don't know that I could drive a conventional car so well. And, I think it would be much harder to pump gas versus just plugging in the car. There are many ways to save if going the electric route ... buying used, avoiding costly options (like long range), leasing from Tesla, and the U.S. has a tax credit right now of $7500 for a new car and $4,000 for a used car.