husband diagnosed 8/7

[trying to stay positive]

Hi. My name is Linda and my husband was diagnosed with ALS on August 7th. We have a 14 year old daughter, and I am feeling scared and overwhelmed on many many levels. I feel like I could write page after page with my questions, fears and concerns. But for now, I will just intoduce myself. I have read a few threads on this forum and it seems like there are alot of caring and supportive people out there. I thank God for that! Right now I just feel needy, not helpful! Linda

 

[Icanmanz]

Hi Linda! Thank you for introducing yourself, and I am so sorry to hear about your husband's diagnosed. May God bless your family, and may He give you both courage to fight this monster. I am the mom of a young man, whose life was claimed by als. My son was diagnosed on March 29, 2006, and he passed on June 3, 2007. His illness and his passing changed my life completely. It will soon be 4 months since I lost him. I still miss him so, but I am okay. What I am trying to tell you Linda is that my Heavenly Father gave me comfort. My son did not want for me to be sad, we talked about it before the end. It was sad, lots of tears, but als is something we cannot control. You, your husband, and your child live your life to the fullest. Show the love you guys have for one another, and yes, lots and lots of hugs. This is a wonderfuls forum, full of caring members, you just ask any question, no matter what, someone will pop up and be of some help. Take care Linda, and God bless!

Irma

 

[brooksea]

Linda,

I'm sorry you're husband has been diagnosed with ALS. It is such a shock. It seems to be afflicting younger and younger people.

So sorry for you and your daughter. But please come here for support.

My PALS and I have a seven year old son. It just doesn't seem to be right whether you have a 3 year old or a 30 year old son/daughter - this disease is cruel to all involved...

 

[trying to stay positive]

Thank you

Irma and CJ,
Thank you so much for your quick response. It is good to know that I am not alone and that there are others who trully understand what this is like. I am at the beginning of a long road and it helps to know there is support along the way. I will post again in the coming days and give more background on my family and situation. Blessings to all of you. Linda

 

[TerryO]

Dear Linda, I am so very sorry that you have to join us on this site. We are all very needy sometimes and this is the best place to speak your mind and ask any questions that you and your family may have . My husband was diagnosed in Dec 06 . We have a son, 6 and a daughter 13. Please hang in there and know that you are not alone. Terry

 

[janf]

Hi Linda , My Heart Is With You . Lean On Us This Is The Best Support Group Ever. Whatever You Need Just Ask. May God Bless You And Your Family. Janf

 

[beeno]

My husband has been diagnosed (2nd opinion) and confirmed with ALS on 8/30/07.
Looking back, he had symtoms for at least 1 1/2 years, and it took the doctors over 6 months of testing to finally say he has ALS.

We are trying EVERYTHING (herbal treatments, detox and even electric shock treatments)
with nothing making him feel any better.

We see a negative change in him everyday. His ankles are very week, on most days he can not even stand up and he falls, his muscles are twitching all over very bad and he has lost approx 40 lbs in the past 6 months. He just started having problems with clearing his throat, coughing and sneezing.

We are still trying to have fun, laughing and going out to supper or over to see friends, but it gets harder on him every day.

This forum will help me out a lot since everybody has their own and different problem to deal with and we can learn from each other.

Thanks for listening and being there.

Beeno:smile:

 

[Icanmanz]

beeno, God blessyou and your husband. After reading your post I started experiencing some flashbacks! I,ve been there dear, my dear sin he is resting. No more als, no more pain where he is at. He is singing with the angels. He has become my Angel, and I feel his presence beside me every second. I do not feel so all alone at all. What an experience. It is so painful at first, and you think you will never ever get over it, and then comes this peaceful feeling that sweeps you of your feet, and you are off to a new life as if your loved one is still here with you. You see, I have not let my son's memory die, and that helps a lot. I could go on and on, but I am going to hold off on a lenghty post. May God bless you and your husband. Live your life to the fullest each and every day. Do a lot of planning. If your husband says "no tears please" respect that. Be strong for him, leave your crying for later. Take a walk to your garden, and let it out over there! I hope I didn't offend you in any way! Take care dear! Hugs! Hugs! Hugs

Irma

 

[CindyM]

Hello to both of you, Beno and Linda. This disease is horrible, isn't it? THank you for joining and i hope we will be able to ehlp you with what is happening to your families. Cindy

 

[brooksea]

Hey beeno,

Sorry for the diagnosed of ALS for your husband. Hope you can find support her on this forum.

 

[trying to stay positive]

some background on my husband

Hi again everyone. I thought I would post some background info on my husband and family so everyone can get to know us and our situation a little bit.

My husband's name is Lenny. He was diagnosed on August 7th of this year. His first symptoms started with right hand and wrist weakness in June of 2005. Since he is a carpenter, the Dr. thought he had carpal tunnel and did a surgery in Nov. of 2005. It didn't help at all so he was sent to physical therapy which didn't help either. He had a carpal tunnel revision surgery in July of 2006. During the time between surgeries he saw a neurologist who did numerous EMGs which showed progressive nerve damage and muscle weakness. He had numerous MRIs and CAT scans, tons of blood and urine tests. All negative. Finally the neurologist said he doesn't know what is wrong and wanted him to see a rheumatologist. (don't know if I spelled that correctly)

During this time I had been researching his symptoms, which kept getting worse and had now spread to his right arm and left hand, wrist and arm as well as his shoulders and back. By this time (July 2007) he had lost 30 pounds, all of which was muscle loss. I just knew, but prayed I was wrong that it was ALS. I found an ALS clinic in Chicago and that is where he was finally given a diagnosis. Even though I already "knew", I still felt like I had been hit by a truck when the Dr. said the words. He is now noticing a little bit of weakness in his left leg as well as in his abdominal muscles. No swallowing problems so far, thank God.

Lenny is 52, I will be 51 next month and we have a 14 year old daughter. This is all so hard. He is still working because of an incredible boss who is letting him do whatever he can, but the job will be finished around the end of the year and he will have to go on disability. Our income will plummet and we will have to move as we will not be able to afford our mortgage. Also our house is a bilevel with lots of stairs. Trying to find a place suitable for what is to come is proving to be a challenge. And of course if we have to leave our daughter's school district it will be all the harder on her. On top of it all, I am on disability due to knee and eye problems. (I will NOT miss the stairs in our house!)

I am getting frustrated just trying to deal with the insurance company and trying to find somewhere that has the assistive devices that he can use at this time. The social worker at the hospital as well as the one through ALSA apparently are overworked and take weeks to even return a call!

Thanks for listening everyone. I have lots more to say but this is long enough already!

Linda

 

[sufernan]

Hello Linda

Dear Linda,
I hear your concerns and fears. I am really sorry you have to move, I hope you will find a lovely new home for you and your family with no steeps! ALS is a horrible monster, it takes our loves one away and changes our lives. I also know that I am a better person, more loving and caring, I now understand about human suffering, and my love for God is so big it fills me up with joy. I lost my husband Daniel 2 years ago - we have a 3 yr old son.
I hope you feel the love and support the people in this group are sending you and your family. There is light in the tunnel! even if it gets very dark sometimes - there is light, and I hope you will be guided by the light.
Sunny

 

[brooksea]

Linda,

Have you looked in to other charity organizations in your area for help? If the ALS Assoc can't help you in a timely manner, you may be able to find a place that takes donations of used equipment and repairs it or cleans it for others to use. I found one in our area.

Is Chicago the closest clinic to you? Very sorry to hear they can't get back with you.

The frustration between dealing with insurance, SS, Medicare, and then having to move would really wear anyone down. We've also been wondering how we are going to maintain. At first it is very overwhelming!

After you get thru the paperwork, hopefully things will smooth out a little for you.

 

[CindyM]

Hello Linda- sorry this is all hitting so fast and so hard. There is a national organization that may also offer some help. Each state has a local chapter, and many countries do to. Some local chapters provide more than just advocacy for folks who want to know how to prepare their homes and job sites for a disability. I am hoping that your local Center for Independent Living will have a resource and referral line to help you find eguipment and other resources. Check out the national site at http://www.ilusa.com/links/ilcenters.htm

Also, did we tell you about the MDA chapter and your local ALS chapter? Good luck and let us know how it goes! Cindy

 

[trying to stay positive]

Thanks to all

Thanks to all of you for listening, your encouragement and suggestions. I checked out the website you suggested, Cindy, and will make some calls on Monday. Thank you. I've only made a few posts so far, and they have all been of the "pity party" nature, so now I would like to hopefully offer some useful information.

Lenny was diagnosed at the University of IL in Chicago. The specialists at the ALS clinic there seem top notch in their knowledge. They gave him a list of vitamins that they suggest their ALS patients take. My husband says that they seem to be helping a little, so I want to pass the list on.

Vit. C 1,000 to 2,000 mg. every day

Vit. E 400 to 800 IU every day

Multi-vitamin every day

Co-enzyme Q-10 100 mg. three times a day

Creatine 5gms/day: must drink 8 to 10 glasses of water a day; may be purchased in health food store; make sure it is made in the U.S. and does NOT contain glutamine


I am currently going to school to learn Reflexology and part of the equipment I have is a red/near infrared heat lamp. It is used on the bottom of the feet. It has been shone to proliferate nerve growth and sprouting among other uses. I have been using it almost daily on my husband. Although I know there is no cure nor even any treatment aside from Rilutek, I figure we have nothing to lose my doing these treatments. My hope is that by promoting nerve growth we can slow the progression even if only a little bit.

Linda