glimmer

HLC is proud to announce the First HLC Kids' Camp- Friday May 3 to Sunday, May 5th at Fairwiew Lake YMCA in Stillwater, NJ. You can learn more about the camp at http://www.metroymcas.org/fairview-lake-ymca/fairview-lake-ymca-camps/ and check out the fun things in store for you! Camp is available to the children of ALS patients and family members. It will be free to all who attend! More information to come soon regarding registration. Please feel free to ask questions at [email protected]. Please let me know if you know of anyone who would want to sponsor a child or children. 0x0x0

Hi glimmer, Think you sent friend request awhile back. didn't learn how to respond until recently, Dumb me. My husband also has ALS. Could use some friends here. Thanks for being mine. Pam

Hi Glimmer. How did the last appointment go with the "team"? Praying there hasn't been much progression of the disease for your husband. No changes here, just frustrated with "other" problems; Tom's company insurance is so far not approving his company disability but he's appealing. And our house isn't selling yet although there has been some interest. Went on my first "Walk to Defeat ALS" and was totally depressed from it, what a reality check! Met a family of a 16 year old girl who died of "bulbar onset ALS". Stuff like that. Really leaning on the Lord this week to see us through! Sending prayers your way! Blessings, ECPara

Sorry, had to figure out how to accept friendship! Forgot! silly me!

Thanks for doing that! Grateful!

Hi Glimmer. Our husbands certainly parallel each other. Tom is very tired mid-afternoon, we think it is primarily Rilutek. His twitching is still limited to arms and left hand, a little in his left leg, and he thinks twitching is slowing down, is that good or bad?. Wonder how long it is between twitching and loss of use, any insight? Speech is getting really bad but he still eats pretty well. He is still doing everything else, last week golfed three rounds of golf, three days in a row, 83, 80, and 87. Yes, we saw a team at Duke: OT, PT, RT, SpT, SW, and others. We don't go back now until June 12th. I keep reading about possible breakthroughs, saw the stem cell study. Also read that Dex may become publically available soon. Reading books about other stuff, too. God, humor, and hope keep us going! Participating in the "Walk to Defeat ALS" this Saturday. Prayers going out for you and your family! Good luck Monday, keep me posted!

Thanks for reaching out! Glad to be in touch!
Jodi

Glimmer, You have to be one of the sweetest people, your messages have a uplifting beat to them. I hope all is well your way. I am sending you much sunshine too!!

Hi Glimmer. I'm sorry we are on this journey together but we can lift each other up in prayer. We had our March 13th appt., too. Good news, all his breathing and lung values were near normal. However, speech is still declining. Still eating pretty well, lost no weight (yay!) but having to discern between edible and non-edible foods at this point. His limbs are fine, although he has twitching in his arms. He even golfed a 78 the other day! Dread when that goes, it's a nice outlet for him. His last day of work is March 30th, he's looking forward to retirement, albeit a little different than he had planned. I see God in our everyday affairs, He is wonderful. Tom has a good outlook, I know God is holding us in his hands and we're doing okay! We feel that "peace that passes understanding". Planning trips right now, he wants to conquer some of his "bucket list", God willing! Please keep me posted of your husband's progress. Blessings to you both! ECpara

Hi Glimmer,
Thanks for your encouraging words, it's kind of funny how we all worry about each other....it takes the worry off of ourselves for a while. The one thing the doctor did say is that in his experience "if you start out slow, you pretty much go slow" at least that is a bit of relief for me and my family. Heck if enough of us pray loud enough maybe God will get sick of hearing us all and send a cure!

Thank you for the light. I think of you and your husband daily and when those thoughts are in my, I ask our Father to bless you both with peace. Stay strong, I am sure that is hard to do.

Hi Glimmer, I was thinking of you and your family today......How are you? Just wanted to let you know that we really did not get any final answer as to what my husband has???? They are calling it Motor Nerve Disease, he started Rilutek and was already seen at the "ALS Clinic" where he was evaluated by a whole team of doctors to get a base line of where he is currently functioning. I outright asked the doctor why he is not technically calling it ALS even though he's treating my husband like its ALS and he told me that because it's only in his legs right not he can't offically call it ALS unitl it moves somewhere else! So I am still kind of stuck in a crazy limbo, but I am going to start preparing for the worst and hope and pray for the best! Who can really begin to understand how some of us younger people with kids are really living this nightmare??? You are in my thoughts and prayers!

http://www.alsa.org/

Alsa website.

http://www.alsforums.com/forum/general-discussion-about-als-mnd/7876-assistive-technology-clinic-voice-banking.html
Link to thread on voice banking

Glimmer, your girls are so young. I think the worst thing is the feeling of being forced into emotions you did not ever think you would have to cope with and you are now in a position as a mom with three little ones that will be having emotions that such little ones should not endure. Knowing God is with you is so important. I heard it said once that if God will not put more on us than we can handle then I wish He did not trust us so much. I have no idea what emotions you must be feeling. Mentally I can not begin to put myself where you are. But, you are yours are on my prayer list and a part of a prayer group. There is power in them. How is your husband dealing with all of this? Much love to you!