[Daniel]

Matt, Starla used a standing frame daily. I or her parents would put her in it and make sure everything was secured right, and she would stand about 45 minutes to an hour, take a break by sitting down for about 15 to 20 minutes, then stand again at least 30 minutes. She liked to stand anywhere from an hour and a half to 2 hrs a day. Its really good for your circulation and a whole lot of other things. The only thing Ill point out is it does get boring…She had very limited vision and at the end of her life was legally blind, so I bought her a CD walkman and she would listen to audio books with headphones while she was standing and Id keep track of the time. This was great for her.

[Daniel]

My wife Starla and I were married in 2014. We met thru an FA site on Facebook. I knew of FA thru a friend that had it and was with her thru the end at the hospital when she died at 29. I fell in love with Starla and relocated from WA to Florida to be with her. Ive been a CNA practically all my life so taking care of her was really no big deal. A person doesnt choose FA and people shouldnt be focusing on your wheelchair anyway. Unfortunately Starla went to be with the Lord feb 26 2019 at 1pm. I lost my best friend to this horrible disease that no one deserves but I will keep advocating for others with it. The point of my story is dont loose hope. There is nothing wrong with a person with FA and it is my ex that those with FA often have the strongest faith and are most appreciative of the little things in life…the things that matter. Never give up. May God bless all of u