It is likely that every person with Friedreich's ataxia (FA), Ataxia, or any neuromuscular disease with no current treatment or cure has heard it many times before "Exercise is the key to staying healthy and may even slow down the progression of the disease."
With obvious positive physical and mental effects, exercise is the main treatment that is available to us right now. However there are many factors such as accessibility, availability, and cost that limit exercise. Adaptive cycling is one of the most accessible forms of exercise because anyone can do it as long as they have the right equipment. For someone living with Friedreich's ataxia (FA) who would like to try adaptive cycling, the first question is:
Would it be better to use a trike:
For someone with FA, exercising the legs is ideal when walking and running become more difficult, and for that the trike is the way to go. However, many FA patients have difficulty coordinating the movement of their legs to be able to effectively power a trike, especially if the person is in a wheelchair part or full time. It is commonly called "knee flop" or "leg flop" when the knees flop out of alignment with the ankles and hips during a pedal stroke. This can be a painful problem for someone trying to ride even a short distance as their legs flop to the side and hit the tires or handles or flop in and knock together with every pedal stroke. In this case it would be ideal to try a handcycle.
There are many types of handcycles with different sitting positions and price ranges. Handcyles are not available at your local bike shop, and there is no good way to know which one is best for you unless you test ride a few models. You really need to check out your closest adaptive sports program who will likely have a few different models in their fleet and will have staff with the experience needed to provide a good test ride. To find your local adaptive sports program (depending on where you live, you may have to drive several hours to get there), first check out disabledsportsusa.org and click on "Chapters" in the top menu. There, you will find a map where you can search for the program closest to you and you can get contact info to reach out and set up an appointment. If there is not a program on the map close to you, Google "adaptive sports [your city]" or "disabled sports [your city]" and see what comes up. You may find a program that is not on the map. Contact the program and set up a test-ride. Many of these programs are 100% volunteer so be patient, polite, and persistent.
Again, there are many different trikes out there so it is important to do your research and take the all important test-ride before you make any decisions. For the purposes of this article, I am going to focus mainly on one manufacturer of recumbent trikes. Catrike makes an incredibly comfortable, durable, and fast trike with brilliant engineering and skilled manufacturing. They are made in the USA and all of their R&D takes place in-house but they can ship anywhere in the world. They have a worldwide network of dealers to help get their trikes in the hands of those who want to ride. Catrike is also committed to FARA's mission - to treat and cure FA. They participate in rideATAXIA Orlando each year, and their dealers are involved with all the other rideATAXIA locations. They promote awareness at their annual rally, and they spread the word on a regular basis to their community of enthusiasts and passionate dealers. Catrike also contributes generously to the Ataxian Athlete Initiative - a program that provides adaptive cycling equipment to people living with Ataxia.
Here is a step by step guide about shopping for a Catrike (aspects of this process apply to trikes in general):
- Check out Catrike.com and take a look at all the trikes they have to offer. I would recommend the Trail or Villager if you have never been on a trike before. However, before any decisions are made you need to go for a test ride.
- Click on "Find Dealer" in the top menu bar. Find the dealer closest to you. Sometimes the closest dealer may be several hours away. On the Catrike website they rank the stores mainly based on how many different models they have in stock. I would stick with Gold, Concept, or Megastore if you are looking to set up a test ride because those are the shops that are most likely to have what you are looking for in stock.
- Let me (Kyle Bryant - firstname.lastname@example.org) know which dealer you have in mind. I will let Catrike know so they can make contact with the dealer to let them know you're coming.
- After getting the go-ahead from me, call the dealer. Tell them that you are looking into purchasing a Catrike and ask them for advice about what model(s) to consider. They will likely ask you questions about how much cycling experience you have, what kind of roads you will be riding on, how fast you think you want to ride, what your long term cycling/fitness goals are etc. (Regardless of whether they ask you, these are questions you should ask yourself in the process.) Ask if they have their recommended model(s) in stock in addition to the model(s) that you are interested in from looking at the website.
- Many people with FA, Ataxia, or any neuromuscular disease that affects balance and coordination has trouble keeping their feet on the pedals. Therefore it is recommended to use “clipless pedals” with cycling shoes whenever you ride.
Make sure to have this conversation with the dealer before you get there so you can make arrangements for the test ride. You will have a much different experience on your first ride if you can’t keep your feet on the pedals. If shoes and pedals is not an option, many people use bungee cords or Velcro straps to keep their feet on.
- Schedule a test ride. It might not make sense to go tomorrow so plan ahead and bring a friend. Make a field trip of it!
- Go for a ride! Test a few models. Consider all the factors and have fun choosing your new machine.
Handcycles and trikes are not cheap and often times cost prohibitive for people living with disability. However there are many programs out there that provide funding for adaptive sports equipment.
- The Ataxian Athlete Initiative (AAI) provides funding for adaptive cycling equipment for people living with Ataxia, through a competitive grant application process. This program is mainly focused on introducing beginners to the world of adaptive cycling but has also funded a few more experienced athletes. The program has funded 21 people since 2009. The application includes general information, a detailed equipment request, your story, and letters of reference applications are open once a year. Check rideataxia.org/aai for more info and the application when it opens.
- The Challenged Athlete's Foundation has a program called Access For Athletes providing funding for adaptive sports equipment. This program historically has been aimed at taking an athlete to the next level in competition but they have also funded many first time athletes including several in the FA community. During 2014, the program distributed a total of over $3 Million in Adaptive sports funding to 1,469 people. The application is open annually in the late fall. More info: CAF Access For Athletes.
- There are also regional grant programs that you will need to search for. For example, if I Google "adaptive sports equipment grants Pennsylvania" one of the results is for the Equipment Grant Program at the IM Able Foundation: imablefoundation.org/equipment-grants/. The IM Able Foundation mainly serves Pennsylvania and surrounding states, but there are organizations like this in almost every region. Take a look in your area, check out the inclusion criteria and make contact with the organization to make sure it is a good fit and get some tips on the best practices for submission.
There is a lot to it but if you keep at it you will be rewarded with the gift of sport which will bring increased physical, mental, and emotional satisfaction back into your life.