I am Rod Fulmer and I have Facioscapulohumeral Muscular Dystrophy (FSH MD) and I am in the fight of my life. You see it all started when my grandfather who had eight children started having trouble walking in his early 40’s. Until then people didn’t live that long so the symptoms of FSH didn’t really manifest themselves. My grandfather and grandmother lived in the Ozark mountains in northeast Arkansas. My grandfather got to where he could hardly walk but tried to work at the co-op feed store to try to raise enough money travel to Memphis, TN to visit a specialist who might be able to tell him what was wrong. The doctor had never heard of muscular dystrophy and didn’t know what it was, so my grandfather returned home and later had to be pulled in a coaster wagon by his children. Unfortunately, my grandfather died at the age of 45-years-old, due to appendicitis. Looking back at old photos it also appears that my great grandmother may have had FSH.
Later on as my dad and a few uncles started having trouble, it was realized that this was something that was inherited from my grandfather but still thought it to be something that just affected those in our family. This was something that just wasn’t talked about and each of us learned to cope and yes hide our ailments as much as possible. You see FSH affects your shoulders, arms and legs and your ability to lift your arms above your head and of course walk. I remember trying my best to hide my shoulders as I tried to walk as near as normal as I could so that no one would notice. FSH now affects not only me but a few cousins, my sisters, and a few nieces.
My father also worked for many years with this disease. In fact, it seemed like he worked just long enough to see his children all grow before he went on disability. He was able to walk with the help of two canes as long as he could until he ended up in a wheel chair. I always thought that I would somehow escape being as weak as him and escape being in a chair and so far I have thanks to the help of my Allard BlueROCKER braces.
For many years I would go to the MDA clinic and always ended up with hard plastic Ankle Foot Orthosis (AFO) braces. Although I had the best intentions of wearing them, they would always end up in the bottom of my closet. It wasn’t until I was going into the grocery store in a brand new pair of Levi’s and fell right in front of this lady who had stopped to let me cross. I skinned both knees and one hand and was so upset that I could to this day not tell you what I went to the store for. The following week my sister and I were waiting on my mother to have a procedure at the hospital and my sister says to me look at my new braces. I sat there looking at her brand new Toe Off carbon fiber braces, by Allard, and after she offered to let me try them on I began begging her to let me have them. It was no time before I was at the Orthotist getting my new Toe Offs. We both started off in Toe Offs but discovered that we needed the more rigid BlueROCKERS.
About two years ago, I was asked to be a part of TeamUP and I kept thinking why me? As a good friend of mine Susan Fortner, who was a representative for Allard, continues to remind me, “why not you?” I am not an athlete but am one of many people who wear carbon fiber braces and are trying to do one thing that so many people take for granted – keep walking. You see with this disease you are aware of each and every step. Yes, I do have a scooter for when we go places like Six Flags and other areas where there is lots of walking, but believe me I really don’t even like to look at a scooter or wheel chair. Being a part of TeamUP has afforded me new opportunities and that is to tell my story, to inspire others and to just be there to answer questions about these awesome braces. I can’t tell anyone what is best for them but I know what has helped me “Get Back Up”. I have also been blessed by the friendship of those at Allard as well as by my fellow teammates. I have done some fun things, which include attending marathons to encourage and cheer on others, while also achieving my own major accomplishments like climbing Georgia’s Stone Mountain and zip lining over the Ozark Mountains. I hope to find new ways to show off my BlueROCKERs in 2016, so be on the lookout and if you are in the Atlanta area maybe we can do some of these together.
Take Care and God Bless,