New member my son-in- law diagnosed April 2006

[Beebe]

Hi to all are friends, My son-inlaw Jack was diagnosed April 2006. Jack is 41 and my daughter is 34. She is doing everything possible to try to help him. Vitamins ,removing toxins, organic foods cooking in glass only. He has been to the dentist to have amalgans removed. Jack's outlook has improved . He feels he's walking better. What we all need is a positive attitude. Jack was a carpenter. Did roofing , siding, decks etc. Lots of TOXINS! His first sign was his fingers and arms were weak and then twitching. We are all working together as a family to fight this.....Beebe

 

[MarciaA]

Beebe,
Welcome to this group! Glad you found us! There are so many people here that can help give support you you during this time! Good luck with your son-in-law's progression. Please know that you are in our thoughts and prayers!

Marcia

 

[TBear]

Hi Beebe:
Attitude and support means a lot. When you need it we're here... usually for both!

T.

 

[Beebe]

son-in-law Jack

Hi MarciaA Thank you for your kindness. This is a tough road to follow. Has your sister tried any of the natural vitamins and organic foods etc. Seems she's a fighter to work the hours she does, no wonder she's exhausted . We get tired and don't have ALS. It's good to keep your body moving so the muscles don't atrophy but don't overdue. Everyone is different. How did your sister"s symptoms start and how long has she had ALS? Beebe from New Jersey

 

[MarciaA]

Beebe,
My sister Kathy's symptoms started last fall (October 2005) and she went to several doctors and had the usual tests. She noticed that her left hand was getting progressively weaker and that she had muscle twitches over her body. She was diagnosed in February of 2006. I know she eats pretty healthy already (shops at a market called Whole Foods where they only sell organic foods) and she does take a lot of vitamin supplements along with her Rilutek. She's also starting a drug trial (don't remember which one) soon.

Marcia

 

[Barbie4]

Beebe

Hi Beebe:

sorry you have to be here, but welcome. My friend Gail is only 41 as well and was diagnosed in March 2006. We are just trying to keep the positive attitude as well and she has started taking some different vitamins as well as the Rilutek.

I find alot of support and great info on this site. I am thankful I found it. Sometimes I just come on and read, and sometimes I write.

Stay positive and strong. Thinking of you.

Barb :-D

 

[Beebe]

MarciaA

Hi there, How is your sister in progression? Jack has changed he looks thin because he was always slim but mucular shoulders arms . He can't open a cap on a new bottle. Frustrating... He's walking OK! Let me know what drug program your sister is starting and keep me updated. We are going to see a specialist at Drexall Univ. in Pennsylvania next Tuesday 5-15. We are doing everything humanly possible for Jack. Stephanie my daughter shops at Whole Foods about an hour from us. One Day at a TIme! My Best, Beebe

 

[Beebe]

Barb

Hi Barb, Nice to hear from all our caring people.. How far has your friend progressed? I see more and more women on the sight. Was more in men starting in their 50's! Younger people are being sruck. We are working to remove all TOxins, amalgans etc. has helped some. Positive attitude helps and prayers. Keep in touch My best, Beebe

 

[Beebe]

TBear

Hi, How are you doing? Am I posting my replies in the right place? Thank you for caring. Keep in touch. Best to you, Beebe

 

[Barbie4]

Beebe

Hi Beebe:

From the sounds of it, Gail is at about the same progression as your son in law Jack.
I am keeping up my positive attitude as best I can.

Barb

 

[MarciaA]

Hi there, How is your sister in progression? Jack has changed he looks thin because he was always slim but mucular shoulders arms . He can't open a cap on a new bottle. Frustrating... He's walking OK! Let me know what drug program your sister is starting and keep me updated. We are going to see a specialist at Drexall Univ. in Pennsylvania next Tuesday 5-15. We are doing everything humanly possible for Jack. Stephanie my daughter shops at Whole Foods about an hour from us. One Day at a TIme! My Best, Beebe

My sister's progression seems fast to me, but then again, I'm wanting it to be as slow as possible, so anything will probably seem too fast! Her left hand has atrophied and doesn't work well anymore. Her left foot drops and her legs rotate between feeling stiff like stilts and "noodly" as if they have opposing magnets in them. She gets real tired these days after a full day of work, so is trying to figure out how many hours to cut out of her day.

I don't know the name of the drug trial she's doing, but I'm guessing it's based in Minneapolis or St. Paul, MN. She's taking Rilutek and a zillion vitamins. Her doctor also has her taking some sort of a protein shake (creotine?) to help keep weight on. She doesn't have a problem eating right now and is getting frustrated at actually gaining weight. In the last few years she's taken off over 30 pounds and now that some is coming back she says she feels like a failure. From all I've read, going into this with a few extra pounds is a good thing...but that's no so comforting right now!

Marcia

 

[Al]

One thing I've noticed and have confirmed with doctors is the fat guys live longer. ALS patients anyway. People having to go on feeding tubes early because of weight loss don't generally do as well as PEG less people.

 

[Barbmox]

my son in law

Hi hope you receive this message.. My hubby has had ALS for over 4 years, symptoms were the same as you have discribed. He is still taking riluzol I guess there is no way to determine it's effect but his disease is still progressing slowly. I'd like to chat with others...

 

[Granny]

Hi Barbmox,
Glad you signed on this forum. Sorry about your hubby, but it sounds like he is doing ok. We would like to chat with you also, whenever you want to post. I am sure after four years you have lots of helpful information!
Hugs and prayers, Leah

 

[Beebe]

Barbmox

Hi Thank you for replying . At what point is your husband at? Jack is weak in hands and arms . His fingers are the worst , left thumb is not working weaker on left side than right. Doctors say he is a healthy person if not for ALS. Some stiffness in legs at times. He does exercise and eats organic food and my daughter has a vitamin program for him set up by a doctor. He' gets B12 shot once a month and so on. We are taking one day at a time. Jack has agreat support group family and friends... Very important! My best to you and your husband . Did you read about the stem cell research.. ? Your friend, Beebe