Joanne
Forum Replies Created
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Amanda
I have no genetic mutation and as much as I’ve raised hitting my head, right front temple, no doctor has made comment regarding a link to onset of ALS. Prior to my fall I was an extremely health, active 66 year old retiree with no signs of anything unusual going on in my body. -
In Jun 2017 I fell down 5 outdoor steps and hit my head on the concrete foundation. Almost immediately I was slurring words. My family physician was away, and when I saw her 2 weeks later she sent me to emerg. I was told I may have had a mini stroke. They followed up with me weeks later and my speech had improved. I sang with a women’s Barbershop Chorus and in late August I was unable to fully pronounce the words or keep up with the beat of our songs. When I next saw my family doctor she made an emergency request to a neurologist. I was scheduled for 2 Nov 2017, the same day my Chorus was in the International Barbershop Chorus Contest. Before I left that appointment I was told I had Bulbar ALS. Within a week I had an in-home visit with a member of our local ALS Society. She provided my boyfriend, now husband and I with a lot of information and support resources. Since Nov 2017 there is no doubt my diagnosis was correct.
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I did not play sports but in June 2017 I fell down stairs going into my basement and hit the left front of my head just around my hairline, on the door. Within 24 hrs my speech was slurred. Over the next four weeks it improved and then came back and worsened. An MRI  showed nothing. By November 2017 I was diagnosed with ALS. All doctors I dealt with who heard my story made no connection to the fall and ALS but I can’t help believe the fall damaged something and brought it on.
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My husband/ caretaker attends all my medical appts. I have no voice so I prepare notes to update those seeing me on what has taken place, changes I have observed questions I have and how I’m feeling mentally since our last visit. Having my caretaker husband with me saves my energy when he can answer questions for me and the medical doctor or ALS team love the note, they save time, ensure they have covered my concerns and brings their attention to things they may not have planned on exploring. My husband and I come away with the full picture and two memories focused on take always.