brian-stanfield
Forum Replies Created
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Tracy- The advice you’ve already received is solid – your presence alone will be uplifting. Prepare yourself, because your dear friend and colleague may be unrecognizable. He will look, communicate and act differently, but he’s still in there. Find a way to connect. If speech isn’t possible then- aac or a tablet/ipad. If necessary move on to a dry erase board, or grunts and gestures until you find that connection. You could just sit with him, and ask some yes/no questions. Be prepared and patient. Hope your visit goes well.
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Smile often. Spread joy and let people know that you haven’t given up on life. ALS is a devastating diagnosis and it can overwhelm even the strongest of characters. Choose to live and make the most of each and every moment. I’ll also recommend smile often from a practical standpoint. After 20+ years living with this disease my facial muscles (along with the rest of my body) are completely shot. The result is “resting frown face” which is even worse than it sounds. Who wants to perpetually look like someone ran over their puppy? Exercise those muscles moderately every day!
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Before ALS I was hot natured, and kept the thermostat set at a chilled 68 degrees. Today I’m ALWAYS cold. I’ve been gifted several snuggies, which are essential for my everyday comfort.
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I try to visit the dentist twice a year. My dentist has a large room where they can clean my teeth without me having to leave my power chair – just a little tilt & recline. If your dentist can’t accommodate your mobility needs – ask around for one who can.
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ALS has certainly changed the way we eat. I struggle to find something ALS hasn’t changed in the 19.5 years since my dx. I still enjoy eating and drinking without the use of a feeding tube. My favorite- a thick cut, well marbled ribeye, medium rare with some sauteed mushrooms, and the soft buttery middle of french bread. A 10 oz steak is a 45 minute commitment that I look forward to a few times a month. I do pretty well with brunch (I don’t get up early enough for breakfast) eggs, pancakes, french toast, etc.
It takes 3-4 times longer to eat about half the amount of food I used to. I usually get tired of eating before I get full. I would always choke on my first bites – so now I’m extra deliberate – instead of 1/2 bites I take 1/4 bites – 30 chews not 20. I’ve gotta get warmed up before I really “go for it”. Talking and eating do not mix – no matter how funny you think your comment is – it aint worth it. We still go out to eat – not quite as often as pre-Covid -some restaurants are better than others when it comes to access to tables and seating. I am blessed – my wife is always there to help me – we got used to the stares and comments long ago…those are other people’s problems.
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Hero? No- I’ve done nothing extraordinary or courageous.
Survivor to the detriment of others. Survivor’s guilt? Yep.
I’ve got regular human-like emotions + ALS shit piled on top.
Great days, terrible days, and everywhere in between.
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Rick Jobus was a warrior. He fought the good fight courageously. Rest in peace Brother.
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Another vote for carbon fiber.
I was fitted for a large plastic AFO shortly after my dx in 2003. I was happy with it at first, until I did some traveling and saw the braces that other pals were sporting. When we got home, the first call I made was to the orthotist. He made sure that I got exactly what I wanted, this time covering every option available. About a year later I got a matching Otto Bock AFO for my left leg, and they kept me walking safely for another two years.
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Alexi – I hope you’re not implying that Dagmar would condone animal cruelty. Dagmar is as kind as they come.
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Yes Katie – I’m a Striver!