Son with ALS

[Tom]

Mariner,
So sorry to hear about your boy. My Mom in law has ALS, and was with us for close to a year before we were able to get her in a nursing home. Landscape had some really good advice and covered quite a bit of what's coming, and soon. My two cents, from what I've dealt with. Prepare yourself, mentally, physically, and most importantly, spiritually. Mentally this is going to get tough, tougher than it already is. Make up your mind that you are going to fight this tooth and nail, and that you'll make the most of every opportunity to make your son's time left here surrounded by love and family. Physically prepare. No, I don't mean lift weights or take up jogging. This means to not burn yourself out, allow other folks to help, and don't let the stress turn you into a casualty. If you are down, this only transfers the load to everyone else. As the man of the house, this will not be easy, but it has to be done. And lastly, prepare yourself spiritually. I myself am a Christian, and I don't know how we'd be getting through any of this without the love and guidance of a Heavenly Father. A doctor can only guess how long your son has left, but the issue of where he'll spend eternity needs to be addressed if it hasn't already. Please understand, these are my beliefs. I don't how you believe or if you do, but I hope so. Other than that, get your son into an ALS clinic and get the machinery rolling on what they can do for you and your family. This site is a good one to come to with questions or concerns or just to talk. Lots of caring, compassionate people here who'll shoot you straight on whatever it is you want to know. I wish you the best. Tom

 

[patricia1]

Mannatech is under investigation aas we speak I took it Nothing happened just lost alot of money They are horrible people. to take advantage of desperate people Pat

 

[Al]

hi mariner. Sorry about your son. I've been doing the ALS shuffle since 2003 and have not seen or heard of one person being helped by glyconutrients. Several salespeople have come on here telling us they either had it or a loved one but on further checking it was just a cheap trick by a creep trying to make money selling false hope. Spend the money on taking the family to Disney World. That'll do more for his attitude and health than whatever they put in their miracle drugs.
AL.

 

[Brentt]

thoghts

Dear Mariner, I am a 47 year old with ALS. I have a family, my son is 22 from my first marriage and my daughter that is 5. My wife and son care for me. I have had ALS approximately 7 years now. Your son's symptoms sound simular to mine. I am now living to see my son and daughter grow up and hopefully until they are married. I am on a home ventilator as I do not have the strength in my diaphram to take in enough air to sustain life. I made the desission to continue the fight providing I was not a burden to them. We have been through it all and have come to the last form of support. After all the considerations of all my caregivers it has been very possible to continue this fight. Your son will seem fine and he will try to lessen the worries to his family members I'm sure. God bless him. There is hope and there is a way to continue should he choose. There are many ventilator assisted PALS that have gone long terms. I think Hawking has gone around 20 years now. As a father and having ALS I can surely appreciate how you all must be feeling. I think the most important thing to me is knowing my family can handle the weight of this battle. As I see it, they seem to be able to take care of me and as they alternate days they get enough time to themselves that is very important. So the best thing is to develope a plan that will provide the necessities as they are needed for the things to come. You will do fine and as the course of events take place things will come together. Use Medicare as that's an automatic for ALS victims. The MSMND group has money to help. Use the ALS group in your area to find the needed items. If you have'nt called the main ALS chapter in San Fransisco Ca. do so.They have a package with much information.

 

[vmd]

mariner:

Seeing our children suffer is more painful than our suffering. Your son is very fortunate to have a loving family. No doubt this will help him deal with the many challenges that ALS brings. I will keep you and your family in my prayers. Prayers do work and God does listen, although we won't know the reasons for our suffering in this world until we reach the afterlife.