My wife is Lisa Jane Unsicker. Lisa Jane’s sister Amy Unsicker created a fundraiser for Amy’s birthday for the United Leukodystrophy Foundation. Amy politely just put that this was because it affects people, but Lisa Jane wants me to share her story.
Amy’s sister has Hereditary diffuse leukoencephalopathy with spheroids (HDLS) which is a neurological condition like MS. It is a type of leukodystrophy. It does not have it’s own foundation, hence the connection with this foundation.
HDLS is in the “hey, we know it exists category”, but there are no cures, no treatments. The only thing they can do for Lisa right now is treat a few symptoms. Lisa takes Bachlofen which is a muscle relaxer, and an anti-depressant. I also give her about 70 Mg of CBD in the form of cookes each day. The CBD allows her to talk a bit better.
HDLS is one of those slow declining conditions. In 2013, Lisa ran her 10th marathon. She started having stiffness of her wrists and balance problems over the next few years. We knew something was wrong and shared our concerns with only a few people–not even our parents. We finally got the diagnosis in 2015 after about 2 years of frustration and anxiety. Over the next few years Lisa’s condition has taken it’s toll. At this point, Lisa can say a few sentences per day only–Aphasia, and needs help walking, eating, etc. The nice thing about this condition is that Lisa is all there. Meaning, every memory, thought, feeling, etc. Although conditions like Alzheimers allow you to walk and talk during the decline, it gradually takes away your mind. Lisa struggles with movement, but no problems at all with her mind. So, each condition has it’s positives.
Please support Lisa and share this post. If you can, donate a bit too. The hope is that most leukodystrophies will be cured in the next 20 to 40 years. Donate and let’s help make this be more like 15 to 20 years.