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]

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]

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]

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]

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]

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]

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!:cry: 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]

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]

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

[Granny]

Hi Bebee,
It is not my husband who has ALS, but me. Sorry I did not make that clear.
I was dx in April of '04. Mine is bulbar ALS, so I lost my speech and swallowing first. I have a feeding tube, but am still able to eat shakes and puddings.
Since Christmas, my left hand is becoming weak and my shoulders and neck. I am still able to walk ok. My husband is my only caregiver so far, and he is wonderful to me. I do have good support from family and friends as well.
Your husband sounds to be doing well for having had ALS for 4 years. I hope this slow progression continues.
Hugs and prayers, Leah

[Beebe]

TodaY WE JOINED FRIENDS AND FAMILIES FROM ALL OVER AT THE WALK IN sEASIDE HEIGHTS nEW jERSEY . The walk brought in over 160,000 Dollars for research. Quite a day. This is our first walk for ALS . Jack walked a little too. My Best to All, Beebe

[Al]

Great news Beebe. We all wish we could have been there to support you. I am sure you know we were there in spirit. Most of us have never been to New Jersey but if we did come it would be for the walk not the casino's.

[caregiver0204]

My husband received his diagnoses three years ago last January. His upper arms are weak and waisting. His legs are strong and his speech and swallowing are poor. He is 45 year old and has had one heart attack and 4x bypass several years ago. He has no wish to continue with the life he has been living. He hopes to have a heart attack before he is unable to move at all. It can be very hard living with this. I wonder how so many of you keep up the positive attitude? For the first several years we traveled and tried to do all the things he had always hoped to do. He is in constant pain and takes many many meds to control it. So I guess my question is how do you remain so upbeat?

[Al]

That really is a hard question to answer. I've had a quad by-pass too, My hands are getting pretty weak and I'm almost at the point of not being able to do a set of stairs. Need a Bipap to breathe at night but I'm just not done living yet. I'm not religious but I believe there is something after you die. Not sure if it is reincarnation or heaven but believing in something helps I guess. We all have our down days but for the most part the good outnumber the bad. Have a new grandchild on the way in Dec. That helps keep you upbeat too. I guess it's a combination of many things. It's hard to put it down to just one or two things.

[Granny]

That is a hard one to answer.
Like Al, I do believe in life after death. Faith and the power of prayer help keep me strong.
Another thing is, my family and friends. If I am down and discouraged it is very hard on them, so I try to keep positive for them.
As yet, I do not have any pain, so that makes it easier to face each day.
It is not without its struggle, but I do try to stay positive and be thankful for what I do have. I know that if I think too much about what the future could hold, it can be scary.
Your husband is so young! I hope you find the strengh that you both need to help you thorugh the hard times. When things look too bleak, I always come to the forum for encouragement.
hugs and prayers, Leah

[caregiver0204]

Thank you, for your insight, he had a good fathers day, I always worry about having to many people over at once that it will be to much for him. We had a big family Bar B Q, He did eat desert, but his meal was 1 Ensure and 2 Boosts. My Hubby had a great time, maybe the best in a while. We also have a new grand child and he brings great joy. He refuses a BiPap and a devise to help with his speech, So I guess we will just make the best of what we can.

[Al]

I would think that after 3 years he would have a pretty good idea of what he expects from life and this disease. We're all different people and what some people see as a good thing others see as a pain in the butt. Personally I like a lot of people here for occasions. I can still fill up pretty good on real food so that would make a difference I think. Don't know what advice to give other than hang in there. We're here if you need us. AL.

[caregiver0204]

Last night I was told that he wishes he had never told me of the disease. We had been married for 20 years and had divorced due to his drug and drinking abuse. He was becoming more violent and our young son convinced me to leave. After 2 years he stoped drinking and was dx with ALS we sold our two house's remarried at his request and became a family again so I thought. We have two sons and I have a large suportive family, he has one brother who lives 10 hours away who he see's once or twice a year. I had hoped it would be better to put the family togetther at a tragic time like this. I can't understand. While seperated he begged for us to return. I would hate to leave him alone. Does he want us to leave?

[Al]

Not wanting to pry into personal things but is he taking any kind of anti depressant? If he is or has been on for a while it could be not working. You can build up a tolerance for them. A talk with the doctor might be needed. After 3 years he could just be getting fed up with it. I know you know this isn't fun for him and I'm sure he knows it's not going to be a picnic for you either. He could be just trying to give you an easy way out if you want to take it. It's hard to know what's going on in his head but with gentle prodding he might open up more and let you know what is really bugging him.I'm pretty sure he hasn't been out looking for a new girlfriend. I know I haven't been anyway so would assume he isn't either. I believe ALS builds loyalty. If you can get over the bad times.

[Beebe]

Hi there, The Benefit for Jack is coming up on Saturday July 8th. Over 600 tickets have been sold already. The local businesses have donated everything needed from food to raffle prizes. His friends and family have been very busy. Jack has an overwhelming support group. We can't believe how wonderful and caring people are. I had contacted the local radio stations too and they are announcing the event at different times this week throughout the day. Awareness!!! We need more!!! Tickets are being sold at the door too! Wish are pals could be there too. Thank you for being there for us. I read the posts every day. I share all the news with the family too. Fondly, Beebe

[Al]

Good Luck Beebe. I know it'll be a great event. Wish we could all be there too. AL.