VoiceforLinda
Distinguished member
- Joined
- Jan 9, 2011
- Messages
- 178
- Reason
- PALS
- Diagnosis
- 11/2010
- Country
- US
- State
- AZ
- City
- Phoenix
Hello,
I was diagnosed with ALS on November 30th, 2010 after two years of having difficulty speaking, breathing and choking. I turned 50 on January 21st and my husband took me to Hawaii to celebrate. We have never been able to do much traveling as our financial situation has not allowed us to but we felt it was time to make some sacrifices in light of what we have ahead of us. A life long dream of mine was to swim with the dolphins and I was able to have a private session while we were there. Since my symptoms have been mostly bulbar I didn't expect to have any difficulties in the water. My experience was quite a revelation of how the weakness is now in my legs and arms. None the less I had an amazing time and I am so very grateful I did this now and didn't wait as we had planned.
My next appointment after my diagnosis is tomorrow and I am feeling a bit anxious. I feel privileged to be in Arizona and able to be treated at one of the finest facilities Barrows Neurology Institute, however the unknown is still very scary. I have been reading the posts and the problems people have with this disease and I find it very overwhelming. I am a new grandma, first grandbaby born in December and my inability to speak to my grandson is more than I can bear. I am entering the angry stage of my diagnosis. I try to stay strong for my family but I need an outlet to let my tears, fears and screams out. My husband who is extremely supportive is really in denial. The doctors made a mistake, God is going to heal me and the Hawaiian air will make it all better. I feel myself getting weaker and from what I have read this is terrifying. I have always been a leader, self sufficient and a caretaker of others. I don't know how to be ALS. I don't want to be ALS. How does one grasp this? I can't even go there but my body is doing this without me on board. Does anyone understand what I am saying?
Linda
I was diagnosed with ALS on November 30th, 2010 after two years of having difficulty speaking, breathing and choking. I turned 50 on January 21st and my husband took me to Hawaii to celebrate. We have never been able to do much traveling as our financial situation has not allowed us to but we felt it was time to make some sacrifices in light of what we have ahead of us. A life long dream of mine was to swim with the dolphins and I was able to have a private session while we were there. Since my symptoms have been mostly bulbar I didn't expect to have any difficulties in the water. My experience was quite a revelation of how the weakness is now in my legs and arms. None the less I had an amazing time and I am so very grateful I did this now and didn't wait as we had planned.
My next appointment after my diagnosis is tomorrow and I am feeling a bit anxious. I feel privileged to be in Arizona and able to be treated at one of the finest facilities Barrows Neurology Institute, however the unknown is still very scary. I have been reading the posts and the problems people have with this disease and I find it very overwhelming. I am a new grandma, first grandbaby born in December and my inability to speak to my grandson is more than I can bear. I am entering the angry stage of my diagnosis. I try to stay strong for my family but I need an outlet to let my tears, fears and screams out. My husband who is extremely supportive is really in denial. The doctors made a mistake, God is going to heal me and the Hawaiian air will make it all better. I feel myself getting weaker and from what I have read this is terrifying. I have always been a leader, self sufficient and a caretaker of others. I don't know how to be ALS. I don't want to be ALS. How does one grasp this? I can't even go there but my body is doing this without me on board. Does anyone understand what I am saying?
Linda