by: Kenny Hersh
Editor's Note: Republished with author permission from the newsletter Synapse.
My life has changed since my diagnosis with PLS some 15 years ago. As I reflect on it, some of the changes have been truly positive and the others range from annoying to more formidable. My inner drive and things that I enjoy have not changed all that much. I was a runner in my pre-neuro world. I enjoyed running a 5K and an occasional 10K three times a week, even during the brutal New England winters.
About a year ago, one of my kids saw an article in the Boston Globe that discussed the Freedom Chair and the small company that invented and manufactures it, GRIT (their website is www.gogrit.us). I was quite intrigued by it and after some looking at their excellent website that has videos and details about the chair, I contacted them for an appointment to check it out myself and ask the million questions I always have. I live in Providence, RI and the GRIT office is in Boston, so it was an hour trip
I usually use a walker to get around safely, but I found that I was missing out on walks with my wife, kids, grandkids, and friends. Going on a hike in the woods was no longer feasible. Walking around cities and strolling on bike paths were also difficult if not impossible activities to achieve until now.
The best way I can describe a Freedom Chair is that it is a hybrid of a wheelchair and a recumbent bike with hand controls. It uses a clever lever system that is powered by your arms. My first time in the chair was a bit like riding a new bike for the first time. There is a learning curve. However, once you practice a bit and watch videos that the GRIT team and users of the chair have posted, it is fun and easy to ride.
The GRIT team is remarkable. They are a very small group of dedicated people who truly believe in their mission to make the impossible possible for those of us who have some challenges. They are eager for feedback from users and have made many changes to the chair from suggestions by users. I have made some comments to them which they are always happy to receive. One of the staff said to me that it is just the engineering thing to always try to improve the mousetrap. I have even read on the Freedom Chair Users Facebook page of modifications they did for one person who needed them due to his situation. That sense of caring and openness to suggestions is not common in today’s world. With over 500 units sold worldwide, they are truly making an impact
We traveled to Toronto in July for a family wedding. While there, we met up with some friends that we have not seen in quite a few years. We wanted to “walk” around Toronto and luckily, I had brought my Freedom Chair with me. One of our friends happens to be an occupational therapist and she literally went crazy watching me get around Toronto in it. We walked around for five hours and I did get many positive comments and thumbs up from strangers as I was keeping pace with the group. There is not a chance I could have done that using my walker.
This past August, we did a family vacation on Cape Cod with our three kids, their 9 kids (a 10th grandchild was born in October!) and a few nieces and nephews. We went on a hike in the White Cedar Swamp walk in the Marconi Station National Park area. This was the hardest trail I have attempted and, except for some railroad tie steps that my sons and son-inlaw gave me an assist, I was able to get through it without difficulty. We like to be “memory makers” for our kids and grandkids and being able to do this with them rather than sitting back at the house was fabulous. My grandkids argue as to which one will get to sit on my lap as I go on it. How great is that? On the same vacation, we spent many hours walking around Provincetown as well, which was a treat.
While not on vacation, I use it for exercise and am hoping to do the Providence Downtown 5K race that I used to run in my pre-PLS days. That race is in September, so I have time to train for it. I am able to walk with my wife and friends around the neighborhood and on the many bike paths in the area. Using it just keeps you in the game of life!
The Freedom Chair does not come cheap. The cost is around $3,000. However, if you are a veteran, it is approved by the VA at no cost to you. GRIT has nointerest financing options available. They often have promos that will reduce the cost a bit. It does come apart and can easily fit into the back of my Honda CRV. However, I find it a bit difficult to get it in and out of the car on my own and do need some assistance. I usually keep it assembled in the garage so I can use it easily around the neighborhood.
If this is something that is of interest to you, please go to the gogrit.us website for more info and lots of pictures and videos. Feel free to contact me at: firstname.lastname@example.org if you would like to ask a question of me. Finally, please email me if you think you are going to purchase one as I can provide you a code for a discount.
Go for it... you will be so happy that you did!