Ataxia

  As if this disease wasn’t hideous enough, it’s carried on an autosomal dominant gene.  You all know what that means.  Your offspring have a 50% chance of developing ataxia. My mother specialized in guilt even though it wasn’t even her gene! I find guilt to be useless.  It’s not as if I did this on purpose. My mother was a piece of work. She actually said to me (once drunk once sober so I knew she meant it) that she doesn’t come by more to visit because she can’t stand to see me the way I am. Can you imagine a mother saying that to her daughter???  Can anyone say self-esteem?  Am I defective- your brain-damaged Ph.D. daughter? Can you tell I have some feelings about this?  I asked her if this happens to my son, should I not see him??? Here’s my genetic story.  There are two ages of onset in my family.  One is the mid-fifties and one in early-forties and earlier (me).  When I got pregnant with  Chris, my grandmother was not yet diag...

  You must get so sick of me harping on exercise.  I do BECAUSE IT WORKS!!! There are ataxia-specific exercises on YouTube.  I watched one this morning that emphasizes strengthening the core.  You don’t realize how much you use those muscles until you can’t. About 15 years ago, I fell and broke my ribs.  I could do nothing for weeks.  As soon as I could, I worked on my core. Please, please, please watch these videos.  They’re probably not all for you so you can design your own program!

                                     I lost both my baby sister  and my service dog, Dasher within 72 hours. Dasher was sudden and unexpected. Stephanie lost a long battle with lung cancer. Words cannot describe the depth of grief. And grief is weird.  One second you’re fine and going on with your day. And the next second, you’re mush. In the midst of this, my husband lost his job, we are moving off the beach, and ataxia. Sometimes life just sucks.

  https://youtu.be/oXuQPY-oDGE?si

  We need to be patient with our caregivers.  I am constantly squelching the urge to scream at my husband.  I know he’s just trying to help, but every time he hears my wheelchair turn on, he asks what do you need?  He travels and I think he feels guilty for leaving me alone.  I need an on/off switch for accepting help.  When I am home alone, I do everything.  When he is home, I do nothing. Saying thank you and accepting help requires grace.  You need to learn this ASAP for your own sanity and for gratitude for your helper.  Your needs will only increase over time so you need to find your way to cope.  Unfortunately, with time, you will need more help. My doctors are constantly surprised that I still dress and feed myself.  Granted, I have made many changes to accommodate my decline.  But I hang on fiercely to those things I can still do. When I did pet therapy, that was my foremost thought.  What grace did it take for thos...