Old 01-07-2012, 09:56 AM #16 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

Thank you all! I am praying for a miracle but also planning for the worst. Luckily, my dad had been contemplating retirement. I know if we get the diagnosis of ALS he will retire. He will not talk about ALS as a possibility to my mom either. My mom and I are just preparing together. I hate it for him! This disease is just not fair! We were able to talk him into the swallow study. He is getting over a cold and doing better at night now. We are going to have him make the appt once he's better. The cold was really scary for him with his swallowing being so poor. I am worried about cold an flu season for him.
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Old 01-09-2012, 10:20 PM #17 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

when they told me that my mom wouldn't be seen for 6-8 weeks, I about died. I called the neurologists office back, and was told to take my mom to the ER. They admitted her, ran a bunch of tests, discharged her with appt in 2 days for emg/ncv. She was diagnosed 4 days before Christmas.
Be persistent! Now, my mom will go to an als clinic, and next week we are going for a 2nd opinion. What is scary, she went from walking fine to needing a walker, to now needing a wheel chair all within 2 1/2 months.
Speech and swallowing not yet affected. Sometimes I think her symptoms are too fast to be ALS.
Guess we will know soon.
Good Luck to you and your dad!
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Old 02-13-2012, 12:52 PM #18 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

Well it is official. My dad saw Dr. Bedlack at Duke. Got an eariert appt after being on wait list. It is ALS. So many emotions going through all of our heads. He qualifies for drug trials. Next appt will determine which one. Has great lung function right now. Still golfing. My parents are looking to retire and move closer to us too. He wants to maximize time with the grandkids. Its just so much to wrap our heads around. Any advice? Everything I read says live now, do what you can! Is moving going to be too much on them? They said they will just travel for trials.
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Old 02-13-2012, 07:53 PM #19 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

So so sorry about the bad news. Take each day at a time and make it count. He's so blessed to have someone so caring in his life. Sounds like he has a great attitude. Take care and lean on the forum as much as you can, there is so much information and personal knowledge here.
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Old 02-13-2012, 08:03 PM #20 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

So sorry about your Dad's DX. Let them move. They'll need you guys close by in the months ahead. I don't think any of you will regret it.
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Old 02-13-2012, 09:11 PM #21 (permalink)
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Default Re: Two months until appointment to determine ALS or MG?

If your parents have long, deep roots where they are currently living, I would recommend against their moving right now. One of our "graduate" members did what your family is contemplating -- even to the extent of building two new homes on a large plot of land. The wife of our member wasn't able to "fit in" to their new community before the demands of caregiving limited her ability to get out and around the new community. Our member later said many times that he had made a mistake in moving his wife away from her support network of old friends, activities, etc.
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