I’m so sorry you’re going through this! I too have been grieving the loss of physical abilities and my sight gets affected as well. I am basically home bound at 53 which is incredibly isolating.

All of my friends are out living their lives and working while I am stuck on my couch. BUT, honestly I haven’t given up hope for some pharmaceutical to be discovered! I pray 🙏🏻 as that is all one can do once all therapies have been exhausted. I pray that something will be discovered and that more research will be put forth for us all!

Losing both hearing and sight is terrible and I’m sure terrifying for you. I think if anything is needed for all of us suffering from this is validation that what each of us are going through is bad, misunderstood and has a lot of grief from loss of having our lives, minds and physical abilities taken away…

I stand in witness to what you’re going through, the grief, loss, heartache at what had been, the fear of the future and the realities that this disease has taken our lives from us. It isolates, diminishes, invalidates - flinging us into the unknown. This is a reality. It sucks!

Yet, I also believe in hope that treatment is around the corner.

But first and foremost know you are not alone! From my isolating couch to yours, I give you witness and big hugs of support and encouragement during these tough times 🤗❤️