skipper66

I'm so glad that your son had a great visit with his grandfather. Also, good to hear that his progression has slowed down and that his appetite is good. I do hope he gets into the clinical trial. Let us know what happens. Things are good here. Jim is keeping himself busy on the boat but knows and feels himself getting weaker in the legs and hands. We just take it a day at a time. Take care, Ruby

Our boys are doing great! We are in the throws of potty training and our 3 year old is doing so good. I am glad we decided to let him be in control of it and have not put pressure on him. They miss grandma and we talk about her often and they both enjoy looking at pictures and want us to tell stories often. Its bittersweet to say the least. Mom's husband is still having a tough time adjusting and my sister and I have attempted to remain supportive however would really like him to feel comfortable letting us have the things left to us. Glad to hear progression has slowed for your Dad and that Eric was able to go and visit. I will continue to pray for your dad and that the trial moves along quickly for him. Hugs, Vic

Thanks for your message Kim, hope your Dad's doing okay. Mair

Returning the (((hug))) i hope they win the world series! Keep us posted about your dad!
Love you
sr sharon

Hi Kim,

I hope your dad gets the med! I went to neurology appt on Tuesday and have MRI's scheduled for the 29th. I am having MRI's of my head, bilateral brachial plexus and Thoracic spine since they have not been done yet. I have developed double vision in the last month and my scoliosis is progressing so I guess that was concerning to him. After that, will have a lumbar puncture. He diagnosed me befor all test were done...first neuro was suspecting MMN. We shall see...Did your son have a nice visit with your dad?

Hi Kim, sorry I never responded to your first message. Glad things are slowing down a bit for your dad. I don't really have a gauge for how fast or slow our progression is around here. My wife can still be stood up and pivot for transfering. If I hold both hands she can walk about 10 - 15 feet. Her breathing is just starting to get a little labored, and late in the day her voice gets strained. Myself, I'm beat up kids are 8 and 2, so... My parents have a weekend home just a few doors down from us, so fri through sun my mom takes alot of the load off, not sure what I would do without that.
Mon and Tues this week we have appts at Mayo so we'll get out of the house for awhile at least.

Hang in there.
Gary

Still doing well. Hope to have my van in two weeks!

thank you kindly for the birthday wish--it was a fun day!

Congrats Kim, I hope your team goes all the way!

Well, Hello there, Kim! Thanks so much for the sweet note. I appreciate being in your thoughts. I'm so happy to hear of your dad's lack of decline. I think my husband is in the same position as your Dad currently is, except of course, that my darling has been unable to speak for about a year. He also gave up the Cpap at night.

I'm up in arms myself, right now. I'm at the tail end of moving out of an apartment, into our rental house and I'm looking for a home that can accomodate a wheelchair and all of our other equipment. At the same time, his ex-wife is sueing us for his Life Insurance and Retirement because "he won't need it." The outcome of that will determine whether we can really move or not. Unfortunately, the judge just doesn't understand this illness or all it entails. I fear this will not work out in our favor.

Just breathe, right? Glad to hear that your son is home. It's always better that way, isn't it?

Be well! Shelly

When you are in Dallas PM me. I will try to come see you if that works for you

Glad you have your son back. I hope his time with his grand father created great memories for him, no matter what the circumstances. Also so glad your father is plateauing right now. That's just great.
I've been visiting my mum in hospital for the past few weeks - she had another fall and chipped a bone in her wrist but at this point is in to be assessed for the next level of care she needs. A daunting time that we have to face with aging parents and may have to face ourselves, later.
Take care. Yasmin.

Did you mean to call me "Lukie"? I ask because that was my childhood nickname, so I was laughing when I saw your post. Whether intentional or not, thanks for the chuckle.

Hi Kim. Glad your Dads looking better. The trip on labor day probably exhausted him. Glad your boy had a good time. Hopefully he gets into a trial and it helps.
Thanks for the message
V.

Hello kim, what trial is your dad hoping to get in? I am now on dex. After my year long trial. So far no side effects except dry mouth. I hope your dad gets in on a trial that promises to give the real drug at the end.
Love and ;prayers
sr sharon