On March 07, I wrote an article about the
neck problems I was experiencing. I received feedback from several people,
all providing helpful thoughts and encouragements.
One person commented by
sharing her experiences with her father, who has Kennedy’s Disease. Even though
I am normally against using devices, such as neck braces, something about her comments
made me disregard my self-made, and often prideful, rules.
I’ve included Susan’s comment below. The last paragraph and,
specifically, the last two sentences are beautiful – a message of hope to
someone who is always trying to inspire others to believe and to hope.
Thank you, Susan, for reaching out to me with your message
of hope at a time when I needed some.
“Hi Bruce,
Thank you very much for your blog and your inspiring, patient and informative writing both here and on the Kennedy's Disease forum. My dad has Kennedy's Disease; we just discovered what it was 02/2014, though he has experienced progressive weakness for 20+ years.
Way back about 15 years ago (long before we knew what was going on), he started to experience weakness of his neck and couldn't hold his head up. So we--not knowing what else to do--bought a neck brace and he wore that every day to keep his head up.
And Bruce, it went away. I don't remember how long it lasted exactly (a couple or several months, not years). I don't know how or why. Nothing else has ever "gone away;" all the other weakness has gotten slowly worse. But after some time of wearing the neck brace around the clock, except while sleeping, he began to be able to hold his head up again. And, amazingly, he has never had issues with it since (and of course I pray this continues).
I know this isn't tremendously helpful, and certainly not scientific information; it almost seems like a stroke of luck or miracle. But I wanted to pass it along anyway. Maybe it has something to do with total rest for a while and you could try this...? Or maybe I'm just passing it along as a reason to hold out some hope, which can also be good. At least, after 20+ years fighting this alongside my dad, I've started to like hope for hope's sake.
With great respect and gratitude,
Susan”
Thank you very much for your blog and your inspiring, patient and informative writing both here and on the Kennedy's Disease forum. My dad has Kennedy's Disease; we just discovered what it was 02/2014, though he has experienced progressive weakness for 20+ years.
Way back about 15 years ago (long before we knew what was going on), he started to experience weakness of his neck and couldn't hold his head up. So we--not knowing what else to do--bought a neck brace and he wore that every day to keep his head up.
And Bruce, it went away. I don't remember how long it lasted exactly (a couple or several months, not years). I don't know how or why. Nothing else has ever "gone away;" all the other weakness has gotten slowly worse. But after some time of wearing the neck brace around the clock, except while sleeping, he began to be able to hold his head up again. And, amazingly, he has never had issues with it since (and of course I pray this continues).
I know this isn't tremendously helpful, and certainly not scientific information; it almost seems like a stroke of luck or miracle. But I wanted to pass it along anyway. Maybe it has something to do with total rest for a while and you could try this...? Or maybe I'm just passing it along as a reason to hold out some hope, which can also be good. At least, after 20+ years fighting this alongside my dad, I've started to like hope for hope's sake.
With great respect and gratitude,
Susan”
Photo Credit: Forlife by taliesin
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