Just dropped in to say Hi! How are you doing? I don't know about you but I wish spring would hurry up and get here. In Central Illinois the kids were out of school Monday due to ice and then today it's 40 out and sunny. Take care, Kim
Hi! Just thought I'd check in with you. How are things going? My dad is doing ok. He doesn't know if the clinical trial of achatar but at least he hasn't had any bad side affects from it. My brother and sister get him out pretty much to the movies, out to eat, and to thier kids sporting events. I took off a week the first of January and hope to go see him then. Kim
Hi ! How are things going for you? My 79 year old dad just got into a clinical trial in Dallas. He will be getting two injections a week with a drug called Athatar. (sp ?) The drug has been out for a long time and has been used for alot of other disease. They are hoping it will help slow down progression in ALS as well. Take care, Kim
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I am no longer able to get in the tub either. I was just wondering today what I am going to do for a bath now. Until this week, I was getting weekly showers. Today, there's no way I can stand in the shower. It was gradual, but now, it seems so sudden, the loss of the legs lifting. sigh.... I am on anti-depressants or I know I would never be able to take this. (
I actually bought some coconut oil not long ago and had my husband massage my arms before. I will have them try the legs too. I'm not so sure the oil helps as much as it just feels good. Amy
Oh I do get you! Mine were like that yesterday. I even canceled going to church today. I'm resting in my recliner - I've been here most of the day. I walked a bit just now, the right is better but the left is like an shaking lead pipe. I drag it along hoping it doesn't catch on anything. If you can still use the tub, try a hot soak. I can no longer use the tub, because I've lost all lift off power and hubby can't pull my arms cuz they're too fragile. How do I cope? Not well some days. Days of pure funk... But the anti depressants have helped me. Can you get your leg massaged? I read coconut oil may help. We are all " falling girls"... The important thing is that we get back up.
Thanks for checking on me. My mind is still taking it all in, but emotionally I do pretty well- trying anyway. I am finding a lot of pain in my arms. Am I right to think that's probably what I will lose function in next?
Your thoughts will not be organized for awhile yet - took me about 6 weeks to re-surface! It's even tougher for you with younger kids. Once you have a sufficient number of posts ( I think 15) you will be able to send private messages. Please - give yourself time to just breathe. You will for sure regain some sort of normalcy and routine. I never thought I would, but I have. God gives us coping skills when we need them the most. There will be dark and darker days, but you'll have bright and light days too. Really. Open your heart and let others help. It's my experience that people truly want to help - if you tell them what you need. Drop me a line anytime! Despite the prognosis we all share, I plan on being here for a long long time!