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  • Hi Nancy,
    I didn't want to hijack the thread you started called I hate this. I just wanted to send you a hug. Take care, Kim
    Hey Nancy - nice to hear from you! So happy you still take your Zumba lessons. I love to dance...well, not really in the mood any more - hopefully I will get back into the mood to Zumba by myself now that I've stopped teaching. LOVE salsa :D So sorry about your hubs too. yes, so different they are with your hubs starting with bulbar symptoms and mine with limb onset. Ron is starting to have breathing problems here and there - some smells choke him, heat chokes him etc. but he's sleeping soundly so far. Our next appointment at the Montreal Neurological Center is right after New Years - I betcha they are going to start him on a biPap. Well, have a beautiful day and keep Zumba-ing ;-) Heather
    just a little hi from me ... My hubby was diagnosed in November after starting symptoms in his left leg in June. I noticed you enjoy Zumba? I taught it for six years and stopped last April, now taking care of hubby full time. He's in a wheelchair ... Slight breathing problems except at night, and he's been losing weight since he has no appetite. Try to have him take Ensure Plus though along with what he feels like eating. Always a struggle 😞 Anyway, have a great evening ... Hope you can rest some... Huggs from Heather
    Hi Nancy,
    Dad is still participating in the trial. But, he is pretty convinced that it isn't really making any difference one way or the other. He went to the clinic about a week ago and they want him to start using a bi-pap at night. One of his breathing tests was showing around a 67% but I don't know which one for sure. He still is able to eat and even though he sounds winded at times his speech is pretty clear unless he's tired. He is losing almost all use of his hands now. The kids and I are planning on going to see him the first or second week in June. Take care, Kim
    Hi Nancy...Thanks for the note. This ALS is so different between each person, it sounds to me that Tom is mostly bulbar. I have a little more of a mixed bag....started with balance issues and foot drag about 2 years ago. Evolved to speech issues about a year ago.....now my speech is so bad many can't make out what I am saying....right now I am noticing more atrophy and clonus in my arms and legs. I am in a bit of denial because I force myself to work out(weight train) 3 times per week and I do treadmill and recumbent bike for 40 minutes 6 times per week...it is really getting progressively more difficult, but I feel like when I have to give it up...I will be done. Keep Tom golfing and hunting, with me it is riding....I feel like as long as I can keep interested in things it will keep me somewhat active. This disease takes so much away from us that it is easy to get depressed and just do nothing.
    Mark
    thank you so much Nancy for your words of support, such a beast, but he is free xxxx Katrina
    Hi Nancy,
    How is Tom doing? Is he still in the trial. My dad is but we really haven't noticed any changes. But, he hasn't got any worse either. I got to go see him for a few days the first of the year. He looked pretty good. He lives at a assistant living facility about five miles from my brother's house in Dallas. It's really plush but very expensive. Thank Goodness dad gets some benefits since he's a veteran. Take care, Kim
    Hi Nancy,
    How is Tom doing with the trial. Dad really hasn't noticed any difference one way or another. He is on the lowest dosage of it that he gets twice weekly. I thought he said that it was 0.7 or something like that. He goes to the clinic tomorrow for a long checkup. Take care, Kim
    Hi Nancy,
    How is Tom doing? My dad hasn't experienced any side affects that he has noticed from the Acthar except for a little bit of trouble falling asleep at night. But, he doesn't know if it's from the drug or not. But, the last few days he hasn't been sleeping better. I'll keep you posted. Take care, Kim
    Hi Nancy,
    My dad gets his injections twice a week. The VA came over to his living facility to give him his shot the other day. I'm not sure if they will be doing it all the time or if my sister will have to take him into the ALS Clinic. He has no side affects so far. Good luck with everything for you and I'll keep you posted on dad. Have a nice weekend. Kim
    Hi Nancy,
    Did your husband start the trial yet. My dad had his first injection this week. He hasn't so far had any bad reactions. I will keep you posted on how things are going. Sure hope it proves promising for everyone. Take care, Kim
    Hi Nancy,
    I got your message. I will let you know when my dad starts the trial for sure. I sure hope it work or at least slows the progression. Take care, Kim
    Hi Kim,
    I just found your message, a few weeks late! It sounds like your dad is in the best place considering his circumstances. Sorry you just can't see him more. It's wonderful he has family there to keep him active. We are doing well, we've moved into our new home, joined a new church, and see our grandkids (and daughter & SIL)a lot. Grandchild #3 is due in two weeks in Indiana (to my son and DIL). We will make a trip up there after he arrives. Tom's disease is still progressing slowly, thankfully. He still golfs, drives, mows the lawn, etc. but no talking and eating has come to a halt - 95% of his nutrition is by PEG tube. Occasionally he will eat a minced up tablespoon of food for flavor, but hacks the whole time. He is having great difficulty with saliva and phlegm. October he goes for tests at Mayo to see if he can go in Phase 2 of a research trial; a drug that may slow progression. We have our fingers crossed! Thank you for staying in touch. God bless! Nancy
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