Tuesday, December 09, 2014

A Guide to Beginning Your Search For Adaptive Cycling Equipment

**Note: This article is focused on individuals affected by FA but aspects of this article may relate to many other conditions with symptoms that include compromised balance and coordination.**

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:
Or a handcycle:

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):
  1. 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. 
  2. 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. 
  3. Let me (Kyle Bryant - kyle@rideataxia.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.
  4. 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. 
  5. 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.

    Whatever you do, consider this factor so you can avoid disappointment when you take your first ride.
  6. 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! 
  7. Go for a ride! Test a few models. Consider all the factors and have fun choosing your new machine.
Catrike makes an incredible machine and is very generous to the FA community but the bottom line is we want you moving and enjoying the wind in your face no matter which brand of trike you choose.  In some cases you may have to consider a different brand. For example: Catrike makes a model called the Pocket, designed for smaller riders.  However the smallest recommended size for the Pocket is 4'10" so for kids who are smaller than that, we recommend looking at KMX.  There are many factors to consider so if you have any questions email me at kyle@rideataxia.org, if I cannot answer your question, I will find someone who can.

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.

Friday, October 10, 2014

Ride Ataxia Philly Promo Videos

We are incredibly grateful to our Media Partner, PHL 17 for an outstanding job on three promo videos leading up to the Philly ride. Check them out. Thank you Jennifer Lewis-Hall and team!

Saturday, October 04, 2014

Ride Ataxia funded research. MRI biomarker study at UMN

Each year FARA puts out a request for proposal for research to be funded by funds from Ride Ataxia. This research grant is focused on translational research - research that will help bridge the gap between the laboratory and the clinic. Last year the Ride Ataxia named award went to a team at the University of Minnesota who is analyzing the anatomical and functional connectivity of the central nervous system in FA using Magnetic Resonance Imaging (MRI). This work is critical to understanding when and which neurological pathways are compromised in FA and will be a building block for future therapies.  The Bob Allison Ataxia Research Center (BAARC) also contributed to the funding of this initial grant.

In July 2013, I took a trip up to Minneapolis to meet the research team and contribute to the project by offering images of my spinal cord. The first scan was on Monday and I arrived CMRR (Center for Magnetic Resonance Research) mid-morning for my baseline exam which included the usual touching finger to nose, tuning fork to toe, and peg board test among others.  That's when I had my first in-person contact with the team at UMN.  I had been working with Diane Hutter for months planning my travel, accommodations, and schedule for my visit.  Diane put me through the paces of the FARS (Friedreich's Ataxia Rating Scale) and put me at ease as we prepared for 5 hours in 2 days in the "the magnet".  Diane, thank you for your hospitality and friendship.

Then I prepared to get inside the magnet for the first time.  The CMRR has quite a few magnets.  Most MRI machines at hospitals are 1.5 T (representing the power of the magnet and the resolution of the images that can be produced).  This study uses 3 T and 7 T magnets. The CMRR has a 9.4 T magnets and they are building a 10.5 T magnet which will be the strongest in the world.  It was clear to me that this was the place to be for an MRI study.

When you go into the room with the magnet there are signs everywhere that say "NO METAL IN THIS ROOM" so the preparation includes changing into scrubs and leaving everything in the locker in the prep room.  They even ask if you have any tattoos because there is iron in the red and orange colors that could be a problem in the magnet, it's crazy strong!  I layed down on the table and the team covered me in all kinds of equipment to collect data from the machine and then covered all of that with a blanket because they keep it nice and cool in that room.

The first scan took an image of my spinal cord from my brain all the way down to my lower back.  It is a composite image of a bunch of different images of different sections of my spine so the bed was moving back and forth as I laid on my back with the tube about 6 inches from my nose while the machine made all sorts of loud buzzing and hammering noises (I had earplugs in and music playing through headphones and I could talk to Dr. Jim Joers [the man at the controls] whenever I wanted.  Plus I had this little squeeze ball in my hand that I could squeeze to let the team know if I was getting uncomfortable).
This image is not the final product.  After the image is captured, Dr. Christophe Lenglet takes over and applies two masters degrees in Computer Science and Engineering, and Applied Mathematics as well as a PHD in Biomedical Imaging & Neuroscience plus a few years experience as a research scientist for Siemens (the company that makes the MRI machines) to create a 3D rendering of the spinal cord so they can better understand the structural and functional alterations of brain connections in FA.

Dr. Lenglet's TEDx Talk:

These images are not the only thing that comes out of this study.  A super specialized technique called Spectroscopy looks at a very specific part of the spinal cord and measures the concentration of certain chemicals in that particular spot.  This study takes a look at people with FA and compares their MRI’s to age matched controls who do not have FA.  The difference in the concentration of these certain chemicals between people who have FA and people who do not have FA will help tell the story of the effects of the disease.  These differences will hopefully let the researchers measure very accurately, the progression of the disease and will help us determine if a drug is working when this technique is used in a clinical trial because it will help tell if the drug has altered the course of FA.

The area that the researchers target for spectroscopy in the spinal cord is a very small section (6mm x 8mm x 30mm) so the scan is very sensitive to movement.  I kept falling asleep during the spectroscopy portion of the scan – and when I fall asleep, I twitch, which was not helping the data collection process.  I can hear Dr. Joers in the little ear plugs, and he can hear me talk back, so he very politely told me that the movements were not great for the data and then I stayed awake for the final 20 minutes.  I am going to pick a different Pandora station next time, Jack Johnson was putting me to sleep.  Perhaps I need to go with some punk rock from my highschool/college years.

In the end Dr. Jim Joers and Dr. Pierre-Gilles Henry said they got the data they needed and it looked good.  After the data is collected, Dr. Henry applies his expertise to analyze the spectroscopy data.

Dr Henry has two Masters degrees: one in Electrical Engineering from SUPELEC in Paris, France, and one in Neuroscience from University of Paris 6.  He got his PhD in Neuroscience from the University of Paris 6 in 2000 and then came to the CMRR in Minneapolis. From 2001 to 2010, he did fundamental research on developing new methods to study brain metabolism using MR spectroscopy (MRS).

From Dr Henry: "MRS is really a unique technique that allow us to study the neurochemistry and metabolism of the nervous system non-invasively.

In 2010, after a major life change (cochlear implant surgeries), I decided I wanted my research to have a more direct impact on the life of patients. I am now focusing my efforts on two diseases: Huntington's Disease and Friedreich's Ataxia. The main goal, as you know, is to find good biomarkers for clinical trials."

Top left: Dr. Jim Joers. Top right: Dr. Pierre-Gilles Henry. Bottom left: Dr. Christophe Lenglet. Not pictured: Diane Hutter.
With the data that they collected and analyzed over the past year, the team was able to prove that there is measurable damage to the nervous system in people with FA and they were able to get another round of funding from FARA, GoFar, and Ataxia UK to scan more patients in hopes of finding out how damage to the nervous system changes over time.

Another aim of this study is to figure out what the timeline looks like for damage to the nervous system and how severe the damage is when correlated with the neurological symptoms (balance and coordination) of the disease.  They still need subjects who are in early stages of the disease and pre-symptomatic patients who would like to accelerate research with their participation.

I am always excited to participate in research that will get us closer to a treatment and a cure for FA.  Ride Ataxia provides an opportunity to contribute to the research that will get us there.

See you on the road!