Hello nanaz,

I'm so sorry to hear about your issues. I read your thoughts about bowing down, swallowing your pride, and accepting a wheelchair. IMO, is the hardest part. But I also feel that there's no reason to swallow your pride to accept a wheelchair.

Three years ago, I was diagnosed with Late Onset Tay-Sachs disease. It's an extremely rare form of a rare disease that normally only affects infants and children. The infantile and juvenile forms of the disease are 100% fatal and there is no cure or real treatment available. Thankfully, Late Onset isn't generally fatal, but it is degenerative and progressive. Right now, whenever I leave the house, I have to use a cane to get around. I'm approaching a time when I may need to use the cane at home too. When it comes to that, I'll deal with it.

The scary part is that there is a very good chance that I'm going to end up in a wheel chair. But nobody knows when that might be. It could be a year or two, maybe five. I have noticed a fairly significant progression of the disease in the past year. I have a feeling that a wheelchair is not more than a year or two off. I've decided that if it comes to that, I'll deal with it then.

I have a number of friends who I have met through an online support group who also have LOTS, and they're all in wheelchairs. One of them passed away a couple years ago, but his girlfriend told me that when he ended up in a chair, it opened up a lot more opportunity for him and he really enjoyed it. It gave him freedom that he hadn't had in a long time.