Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

Natalie Denny

Name: Natalie Nadine Denny

Age: 35 years old

Where do you call home? Eskasoni First Nation, Nova Scotia, Canada

Education (degree(s)):  Bachelor of Science in Nursing.  I worked as a community health nurse for nine years in my community.  I am retired now as of two years.

What is your relationship status? Do you have children? I am married to my wonderful husband Leroy and we have a 16 year old daughter named Lenita.

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed with Friedreichs Ataxia when I was 18 years old.  I specifically remember being in my high school gym class doing fitness testing.  My younger sister Angie, was my gym partner in that class.  Running...I barely kept up running with the rest of the class.  I knew I used to be very fast which was something I used to be proud of. Then there was the balance test. This was where you stand on a block on 1 foot with eyes closed.  I couldn't do it!!  I immediately suspected that I had FA and told Angie but was afraid to tell the rest of my family.  I didn't want my family, especially my parents to feel sad that another one of us has this devastating disease.  After eventually telling my parents what I had suspected and that I want to be tested, I was relieved that they supported me.  My mother suspected that I might have it also because I would bump into walls when walking down the hall to my bedroom.  I didn't realize until then that I staggered and swayed. My parents waited for me to be ready to be diagnosed, after all, there is no treatment or cure.

Are there any others with FA in your family? Friedreichs Ataxia is no stranger to my family.  I have a brother, Terry who is 10 years older than me and a sister, Beverly who is 11 years older than me with FA.  I also had a sister named Anita that had FA.  Due to complications of FA, she passed away 35 years ago when she was 13 years old. We also have another brother Peter, and two more sisters Valerie and Angie that don't have FA and are great at helping us when we need it.

Describe your transition from walking to walker/wheelchair. My transition from walking to being in a wheelchair was not as bad as anyone would think! I knew what to expect.  Having an older brother and sister go through it before me gave me a heads up on what to expect.  I grew up watching them.  Its what I viewed as normal.  I knew the process and stages of FA and thankfully, I'm still learning from them to this day.

My personal stages were walking on my own to walking and holding on to walls or strictly, a family members arm.  Eventually, I allowed other people to help me and that was a big positive change I made.  Then I used a rollator walker for a while and it made me feel independent again.  When walking with my walker became difficult as my ataxia progressed and it was no longer safe for me to use it, I got a wheelchair.  I have been using a manual wheelchair for six years now and I want to keep using a manual for as long as I can.

What do you like to do to stay active and what type of exercises work for you to stay strong? I work out with my trainer and I like the Ataxia & Fitness group on facebook. Adaptive exercise is interesting!

Do you have any hobbies or special interests? I love to travel and meet new people. I like working out, hanging out with family and friends, playing with my puppies, browsing through social media, oh and I love sleeping lol.

What is a good trick to make daily life easier? Accept help.  If people offer to help you, take it. If you need it, ask. I see help as a gift.

When FA gets you down, what do you think/do to feel better? I talk with family or pray. I love praying!

What is one way living with FA has POSITIVELY affected your life? Having FA has positively affected my life by meeting the FAmily, by going to conferences and keeping in touch via facebook.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Take good care of yourself.  Accept help.  Things will become difficult physically, mentally, and emotionally but try to focus on all the positives in your life.  Life is easier if you are a positive person and grateful for what you still have and are able to do.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? This statement means that I don't have to live my life like a sick person.  Having FA is just a small part of me.  I can do many things, I might just do things a little slower or different.

We are stronger TOGETHER! Find a new Meet the Community interview every Monday!

 

 


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

More articles from this author