skipper66

Hi Kim -- just wishing you a nice Saturday evening. Take care.

Kim, Good to hear from you! It is great your Son pushed his GPaw around, that is something he will remember. My 8 year is showing more concern for my Mom, but I am as well. I have voice messages from her a year ago, where her speech was 'normal', we listen to them ALot! She will not use the BiPap and has been told numerous times its benefits, I keep trying. Take care!

Hi skipper,

Glad your son is with your dad. That's very special.

For the most part I tend not to read the DIHALS. I don't feel I'm qualified to answer some of their concerns and prefer to stay away. Once in a while, when I do read them, I either feel bad that they're struggling so much or just roll my eyes and move on.
Have a good evening. Take care. Yasmin.

Hi Kim,
No change on the stone yet, no answers on me.
Hope those two enjoy the game... We watched on tv. We did the ALS walk in Sacramento today... We had 20 in our group....Rog is really tired.
I hope your son is having fun with his grandfather, glad progression seems to have slowed! Thanks for checking in...I feel like a one armed paper- hanger! I'm glad my sister is here for a few days...she needs a break and I'm glad we can give her one.

Jen

I unblocked you to see your comments. You need to take a mellow out pill, and stay off the DIHALS threads. Spend your time with your kids.

Hi Kim, Just saw your msg. I bet your son is really getting excited about the airplane ride. Hope the trip goes well and he has a good time. Dean is about the same just getting a bit weaker. He has a VA appointment on the 18th and we will discuss getting a PWC and possibly a hospital bed. We are still in the "moving in" mode. Boxes still needing empty - mostly my daughters now. Will be glad when I see no boxes! Hope your Dad is doing well. This is not a fun journey for any of us. Hugs, Janice

Hi Kim:
Thanks for writing. I was diagnosed May 2 of this year, however have been having issues with my ring finger on the right hand for about 9 months at the time of diagnosis and now this has spread to weakness in both hands. I have difficulty with opening certain things and anything that requires a firm grip with the end of the fingers is usually a HUGE challenge. At this point this appears to be my only issue, other than possibly depression, which I try to keep in check but somedays that task can be overwhelming and I give in to it temporarily.
I'd like to know what the typical symptoms are when this spreads to other extremities, for instance feet. I suppose it would start at the end of the limb (like it did in my finger as apposed at the elbows or shoulders etc). It's unfortunate that we have met because of this similar circumstance, but I now realize the importance of enjoying everyday with my wife and girls ages (13) and (10).
Take care,
Darryl

skipper...i had a good think abut your problem.....its not unusual for siblings to argue.....in my experience its when one of them feels the other is getting more attention than them...never the less , i would not punish her.BECAUSE it would only increase her grievance.sit her down and try and get to the root cause...and explain how hurtful it is to the whole FAMILY...gently does it wins the day...good luck johnny...

Hi skipper, was gunna have a go posting some pictures of the boys but not really sure how to go about it? Any tips?
Danny

Hi Kim! He is declining ever so slowly. His speech is almost gone, swallowing is difficult but he is still eating. He's getting the PEG tube end of October, he can't consume enough calories to keep weight on. He only has lost 8 lbs. but the doc doesn't want him to lose any. His FVC reading also went down to 64%, a drop of 8 points. So far the Bi-pap hasn't been brought up but I know it will be suggested soon. Mobility on the other hand is great! He still golfs a great game, does yard work, and drives everywhere. Thank goodness he can still do these things. We go to Disney World in 2 weeks with family, he will rent a scooter because his doctor doesn't want him to burn many calories. He's a little bummed about that since he can still walk fine, but he's come to terms. Glad for the update on your father, hope we both continue to see slow progression. Take care. Nancy

hi kim - was in the hospital for 7 dys with a blood clot that ran from my groin to my toes -- no pulses , no flow. scary but they got it under control. am in the process of placing most of my beautiful cats. want to make sure they are in loving homes. when they leave in the crates i cry for days. have 2 left and have to keep them as i can't go thru that pain anymore. in w/c permanently, stay home most of the time as my transfers into/out of cars are a bit treacherous (using transfer board) . generally am content and have come to terms with this evil dis. and adapt to my ongoing weaknesses accordingly. having been a therapist i know pretty much what i need in adaptive devices and how to make life easier as i get worse and weaker. thank you for the prayers. hasn't worked yet -- hmm guess i'm doomed as are we all are. just marches on with no slowing or remission. how is everything with you, pretty similar i imagine.. wishing you and yours the best.
cyndi

I am taking third shift from the agency and going independent provider to try and find nurses who aren't as sleepy as I am so I can get more rest. Right now I am sleeping during the day while the first shift nurse is here - i get a few hours a day 0_o

Hi Kim, hope you have a good photo session - Glam Up! maybe post it here ? Hope also your son has a great time with his Gramps. Take care.
Mairi

oh captain my captain - sending out thoughts of peace and strength

Teens can be such a challenge...I'm so glad that I am done with that and my daughter has grown up... Rog and I really thought we'd be burying her rather than the other way around...she lost her way for awhile... She has come around and is an awesome mom to Maddie so I guess we didn't do so badly after all .. ). Don't give up, there is a light at the end of the tunnel!

Jen