Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

Frank Sullivan

Frank SullivanName: Francis (Frank) Sullivan

Age: 69

Where do you call home? N. Billerica, Massachusetts (~20 mi. NW of Boston)

Education degree(s): AS/MIS Northeastern Univ.

What is your relationship status? Married 44 years; - 2 married daughters and 3 granddaughters.

What's a typical day for you? Get up 7 - 7:15ish. coffee with my wife, Linda, crossword or 2 on the laptop; read stuff - typically not novels, but rather news (online), then maybe hobby-related (hardcopy) magazines I enjoy. Linda is the cook, and I am usually the 'cleaner-upper". So, she does lunch/dinner, and afterward, I am on kitchen-detail. In the nicer weather, I may go outside onto our screened porch and read or compute in the fresh air. Lots of time spent out there. We both love our porch! Afternoons, I often go upstairs to my den, and use my desktop PC to play a game or listen to music; or maybe watch a Netflix flick on the tube. Dinner at 5 or 6. Evenings vary - sometimes I will go upstairs to watch sports, or something, especially if my wife is watching one of 'those' shows (cooking, dancing, bachelor or 'housewives', etc.). I usually am in bed before 11:30. So, all of this is typically only if we don't have any plans. And I do think we are fairly busy people, for seniors anyway. Fortunately, both my kids live in Town, so we see them often. Babysit; help them with their busy lives, etc. I guess any activity is good for me, as it keeps me moving, and the blood flowing.

How long have you known you are living with FA? I was diagnosed with Late-Onset FA (LOFA) in 1998. I do remember having symptoms as early as '93 & '94 (some lack of control while walking). After 2 or 3 years of seeing a neurologist, he had me thinking I was 'crackers' (as my symptoms were fairly slight in those days). So, from outward appearances, I guess I seemed pretty 'normal', but sitting in the driver's seat, I knew I was anything but normal. In time, my Neuro agreed and sent blood out to be DNA tested. Three weeks later, I had my diagnosis.

Frank Sullivan CollageAre there any others with FA in your family? Yes, my older sister (71) was diagnosed with LOFA about 10 years ago. My parents had 5 kids, so 2 of us have the disease. My family 'generously' falls into the 25% affected offspring statistic.

Describe your transition from walking to walker/wheelchair. After several years of worsening balance/gait, I finally had my first 'nasty spill'. So, due to my various injuries, I transitioned temporarily to a wheelchair. In 2010, I began using a rollator and I remain heavily dependent on a rollator today. I believe I waited too long to use a walking aid though. Much of my resistance was due to vanity, no doubt. Lesson learned.

What do you like to do to stay active and what type of exercises work for you to stay strong? I think just staying quasi-active with day-to-day living, is my main source of exercise. It would be very easy to sit back and stay comfy & safe. But I know if I don't stay active, at least to some degree, it will become harder and harder to do so. I think if I lived alone there would be a strong temptation to do a lot more sitting around, and playing it super-safe. But, as mentioned earlier, it seems there's always something going on. Honestly, sometimes I get annoyed, maybe having to go out to dinner, or perhaps to visit someone. Why? Because it's such a hassle! And it's hard!! Sometimes my body just feels like a sack of rocks, ready to collapse and crumble. No energy. Usually, though, I will succumb, and agree to plans, and do stuff anyway. Why? Because it IS so hard. And at the end of the day, it gives me some solace to know "I didn't cave-in to FA today". No, I fought it and won a small battle. And it feels good. Not to my body so much, no, my body feels trashed. But mentally it gives me a boost, I guess. The only other formal exercise I do stems from time spent at physical therapy. Mostly leg & arm strengthening. I just finished an 8-week 'neurological' PT stint. I think the only thing that separates neuro-PT, from regular PT, is that one must sit for all activity/exercises. And I usually leave with homework - stuff to do at home when I am not visiting the PT facility.

Do you have any hobbies or special interests? Yes, I have a few interests/hobbies. Though I must question my wisdom in choosing them. (1.) Ten or twelve years ago I joined an R/C club, started flying R/C airplanes. I did that for 5 or 6 years and had to quit. One thing that this hobby requires is for the 'pilot' to always look up and keep an eye on your model. Of course! Well, this works fine for someone without balance issues but becomes dicey for someone with worsening balance issues. Not smart. (2.) Another hobby I love is astronomy. Been doing that for 8-10 years now, off/on. Again – if you think about it – backyard/telescope/looking up (in the dark!). Not smart. I have been using my scooter in recent years while using my telescope. It's safer but pretty limiting. So, much of my enjoyment with this hobby is now reading and using Astronomy apps on my IPad. (3.) Model Railroading – have a small layout in my basement. Enjoy it. But don't use it as much in recent years, as it is difficult to 'work on the railroad', needing fine motor skills, plus it is a lot of on-your-feet activity. It is something I still really enjoy. However, much of my activity with the hobby is relegated to just reading. (4.) Guitar. This hobby has changed (evolved?) over time for me. I decided to put down the 6-string, as my ability to finger frets, and to strum isn't what it used to be. But then, it was Never great! Lol. So now I decided to focus on elec. bass. Strings are 'fatter' and therefore easier (for me) to finger. And – there are only 4 of them!

Screen Shot 2018 12 05 at 2.05.49 PMWhat is a good trick to make daily life easier? Grab bars everywhere. Elec staircase, if you live in a multi-level home or apt. And finally, I am fortunate to have an elec. wheelchair (Medicare helped with this). And I use a mobility scooter for outside. I'd be lost without this.

When FA gets you down, what do you think/do to feel better? If I'm having a down day, I just rely on my interests to occupy my mind, and I know "this too shall pass" and that tomorrow will undoubtedly be a better day. And it usually is.

What is one way living with FA has POSITIVELY affected your life? I have learned how kind people really are. Case in point – when Linda & I were leaving a restaurant recently, there was a table of teenagers having breakfast. When one of the boys saw us leaving, and me using a walker, he immediately jumped up and hurried over to the door to hold it open for us. Well that act of kindness, albeit small, will stay with me forever. So, this and similar types of acts by total strangers has opened my eyes in such a way that yea, FA has positively affected my life. (& my wife's)

What is a favorite motivational quote of yours? "If I rest, I rust!"

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Never give up, a lot of smart people are working on this.

What is the first thing you want to do when a cure/treatment to FA is found? Take a long walker-less walk, while trying to figure out how I'm going to pay for it.

"I have FA but FA doesn't have me." What does this statement mean to you? To me it simply means to continue to live your life, as best you can, despite the hand you've been dealt. After all – what choice do we really have?

ChristinHaun mtc sig 16

About the Author

FARA Ambassador Program

SHARE

FacebookTwitterLinkedInYoutube

 

Archived in
  the Ambassador Blog


Site Map     Privacy Policy     Service Terms     Log-in     Contact     Charity Navigator