I don't really blog about my brother's illness. Part of me feels that it is an inappropriate forum to do so but today after I called up to check on him, I felt a compulsion to mention it
He has been diagnosed in suffering from a neurological condition called progressive bulbar palsy for around a year now, and he has been on an emotional and physical roller coaster relating to it ever since.
As with any disease and syndrome that has no real clinical treatments, there seems to be an unwritten rule that people just "get on with things" despite everything that the condition throws at them. It is a benign statement for what is sometimes an impossible task, and to be honest if anyone resorted to this kind of platitude when I was in the middle of pharyngeal spasm attack, I would ram a length of oxygen tubing where the sun doesn't shine!
Yet my brother is coping with his condition in a normal, variable and very self directed way. He has recently acted as a guitar tech on an exhausting 17 date national tour of a rock band, started my sisters' obsession with false tattoos and has dealt with a spasmodically supportive health service without much chest beating or complaint to us, his family.
Today I could do one tiny thing for him....I called up to utilise some of my Intensive care skills to briefly check on the condition of his chest before he and my sister-in-law go on holiday.
In the great scheme of things, it was nothing but a ten second job, but boy did it make me feel as though I had at least done SOMETHING concrete to be a support as he " gets on with stuff"....
I just wish ( as I know my sisters' do) that we can do more.
http://en.wikipedia.org/wiki/Progressive_bulbar_palsy
Just by being there, John, and showing your support for your brother is more than you realize. I'm sure your brother appreciates your expertise and concern. It can, I'm sure, be very disconcerting for him when he is alone with his thoughts and feels uncertain about things.
ReplyDeleteSorry to hear. Family illnesses are the pits. My grandmother had heart problems that we lost her to in 1998 at the age of 62. She had problems for the best part of the five years prior. But the best thing I could do was lay with her in her bed and watch tv with her. I'm not suggesting you lay in bed with your brother, but just knowing you care enough to be there helps tremendously.
ReplyDelete~Randy
Sounds like you are doing much more than just "something".
ReplyDeleteThanks for sharing and for educating us on this disease.
I'm so sorry to hear about your brother John, having a close and supportive family must really help him, probably more than you realise.
ReplyDeleteHey, John, I tried my best to look up this disease. I had never heard of it. Not wanting to sound like an idiot, I read various articles and I guess my hardening of the arteries has done me in. It all sounded Greek to me. I used to know this stuff. From what I got out of it, you are doing what you can, being supportive and there for him when needed.
ReplyDeleteIs this genetic or does it tap you on the shoulder one day and say hello?
Sorry about your brother's illness.
ReplyDeletethanks eric and sharon....
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thanks eric and sharon....
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Your helping hand must be a comfort to your brother.
ReplyDeleteEven what we think of as small help, really is big. You are fortunate to have a family that cares for one another. You are a good person John.
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