I was diagnosed by a neurologist about 5 weeks ago after two EMGs and MRIs confirmed his suspicions. I'm not sure how long I've had this as I was in treatment for Lymphoma in 2014 and never fully recovered from Chemotherapy. Now that I have done some research, I think I was passing off some symptoms of ALS as late side effects of Chemo.
I started having problems with my voice over a year and a half ago and since the start of this year it has progressed to breathing and swallowing difficulties and terrible fatigue. I'm still walking with a cane and walker and eating and breathing on my own but I feel myself slipping a little more every week
I'm a 59 year old female living alone with no possibility of a caregiver.
With cancer, everything was hurry up, with ALS, I'm waiting for everything. I can't get in to the ALS clinic near me to see a nurse practitioner until another month, then wait again for a first available to have the functionality tests, probably another month they advised. They will not book both now.
I'm in Tidwell hospice's transition program for terminal patients that don't know how much time they have. A volunteer comes every week and shes been great! I also attended one ALS support group at the hospital which was scary.
I'm due to sign a DNR and living will this week as I dont want any feeding tubes or invasive breathing machines.
I'm torn between waiting around for the clinic and taking the time to travel while I still can.
I could use any advice you can give about how to cope with what's coming.
Thanks for reading!
I started having problems with my voice over a year and a half ago and since the start of this year it has progressed to breathing and swallowing difficulties and terrible fatigue. I'm still walking with a cane and walker and eating and breathing on my own but I feel myself slipping a little more every week
I'm a 59 year old female living alone with no possibility of a caregiver.
With cancer, everything was hurry up, with ALS, I'm waiting for everything. I can't get in to the ALS clinic near me to see a nurse practitioner until another month, then wait again for a first available to have the functionality tests, probably another month they advised. They will not book both now.
I'm in Tidwell hospice's transition program for terminal patients that don't know how much time they have. A volunteer comes every week and shes been great! I also attended one ALS support group at the hospital which was scary.
I'm due to sign a DNR and living will this week as I dont want any feeding tubes or invasive breathing machines.
I'm torn between waiting around for the clinic and taking the time to travel while I still can.
I could use any advice you can give about how to cope with what's coming.
Thanks for reading!