Virginia Woman Proactively Chooses Tracheostomy and Enjoys Full Life

"It definitely took some time to get adjusted to having it, but it was the right and safest choice for me."  - Lena Jackson

Lena out and about in her power wheelchair

My name is Lena Jackson, and I live in Virginia.  I am a wife of 13 years and mother of two creative children, (a 19 year-old daughter and a 12 year-old son).  I am living with Limb Girdle Muscular Dystrophy (LGMD), subtype 2J (Titinopathy).  It was a late onset disease for me. My neuromuscular journey began in 2006, and my life has changed dramatically and slowly since then. ​

I  first noticed weakness in my legs, then my arms. I had my fair share of trips and stumbles which then turned into falls. My breathing and my heart have also been affected by the condition. I was first diagnosed with sleep apnea after having a sleep study, and I was always tired during the daytime. The more pulmonary function tests I took, the worse my numbers got.  After I had my son, my second child, I used my bibap more during the day as needed. 

Losing the ability to walk was so frustrating as I really didn't like getting pushed around in a wheelchair. I didn't like relying on others to get around.  Once I realized how hard my heart was pumping and how low my Oxygen dropped each time I walked, it made more sense to use my wheelchair. When I received my power wheelchair, my life changed tremendously. I gained such a sense of independence and freedom.  I love being able to move myself and feel the breeze on my face. 

When I was prescribed the Trilogy ventilator, I was set up with a “sip/puff exercise mode” (Mouthpiece/MPV mode), and a second prescription was enabled in bipap mode. In 2016, I chose to get a tracheostomy to prevent an emergency situation, if I became ill in the future. It was a decision that was not made lightly. I understood my cough was so weak that I was no longer able to clear my throat. My Carbon Dioxide levels were consistently in the seventies. In 2019, I was admitted to the hospital with a mucus plug I couldn't clear even with suction and had swollen legs and feet. After almost two months in the hospital, I was ready to go home to my family. After being discharged from my longest hospital stay in 2020, I decided I wanted to do more! Through determination and Zoom meetings, I have become an advocate for my health, my community, and my family. ​

Lena happily posing for a selfie

I was so weak, but with my faith and determination, I began exercising. I also decided to get involved with anything that interested me. I will celebrate my five-year trach anniversary in July 2021. It definitely took some time to get adjusted to having it, but it was the right and safest choice for me. Today, my Carbon Dioxide levels are in the mid-thirties, and I no longer have the fear of choking. I can participate more with my family and enjoy life more fully.

​I love dancing in my power wheelchair and taking st"rolls" around the apartment complex. I joined the My Peak Challenge program which encourages me to eat healthier and keep moving. I also enjoy painting with watercolors and attending weekly art classes with Society X. I love learning, meeting new people, and attending Zoom meetings about topics I feel passionate about. I volunteered to text voters during the last presidential election, and I constantly share on social media to promote social change. One of my biggest achievements during the past year is becoming involved in the Northeast Chesterfield Community social group. I help research topics and contact potential speakers for our bi-weekly meetings. 
 
I encourage others with NMD to do your research, join Facebook groups related to your specific condition, and ask tons of questions. It can be frightening at first, especially if you don't know what to expect. We are a community of problem solvers and are up for a challenge!

Lena exercising with her PVP pipe (doing bicep curls and range of motion slides)