Hello all,
My name is Maria. I was diagnosed with ALS in December of 2020. January 2020, my husband and I were out for a walk when I tripped over my own toe, (thank you, drop-foot) and nearly broke my nose. We obviously kept to ourselves when the first lockdown happened. I didn’t realize how much my gait had changed until a friend asked my why I was limping. Onset was my right foot/leg, with the left side following about 6-8 months behind.
By August I was referred for tests which took forever to actual schedule. I received a diagnosis of ALS a week before Christmas. Lucky me.
I'm here in this forum since the Canadian ALS Society doesn’t actually have anything like this, and they have been all but useless to me. It took them three weeks to get me a rollator because they claim my OT never submitted a request. Other loaned equipment has taken even longer to procure.
Anyhow, here we are, about 14 months after diagnosis. I can still walk around the house with the rollator. I have not been outside in months since I need to use a wheelchair outside the house. Friends’ homes are not accessible. Public bathrooms are a complete nightmare to use.
I have some use of my hands, which are like my feet, the left being months behind the right in degeneration. Fortunately I’m ambidextrous.
I understand that some of our experiences are going to be different, including terminology, but I’m just looking for people who can relate to what I’m going through.
My name is Maria. I was diagnosed with ALS in December of 2020. January 2020, my husband and I were out for a walk when I tripped over my own toe, (thank you, drop-foot) and nearly broke my nose. We obviously kept to ourselves when the first lockdown happened. I didn’t realize how much my gait had changed until a friend asked my why I was limping. Onset was my right foot/leg, with the left side following about 6-8 months behind.
By August I was referred for tests which took forever to actual schedule. I received a diagnosis of ALS a week before Christmas. Lucky me.
I'm here in this forum since the Canadian ALS Society doesn’t actually have anything like this, and they have been all but useless to me. It took them three weeks to get me a rollator because they claim my OT never submitted a request. Other loaned equipment has taken even longer to procure.
Anyhow, here we are, about 14 months after diagnosis. I can still walk around the house with the rollator. I have not been outside in months since I need to use a wheelchair outside the house. Friends’ homes are not accessible. Public bathrooms are a complete nightmare to use.
I have some use of my hands, which are like my feet, the left being months behind the right in degeneration. Fortunately I’m ambidextrous.
I understand that some of our experiences are going to be different, including terminology, but I’m just looking for people who can relate to what I’m going through.
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