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 dx. 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 dx 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

[jimercat]

Linda,

I'm sorry you're husband has been dxd 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]

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 dx 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

[jimercat]

Hey beeno,

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

[trying to stay positive]

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!:oops:

Linda

[sufernan]

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

[jimercat]

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 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

[l2c]

Hi Linda, my husband was dx in 2005 at the University of Chicago by Dr. Roos who happened to be a personal friend....never thought we would have to see him in a professional capacity!

Don's ALS started with cramps, then in his left hand then right etc. His hands right now are very clawed - I don't see too many who have that. His muscles were so strong that the weaker ones gave up and it pulled his fingers in toward the palms. He has figured out how to do a lot of things - I don't know how!!!

Don was dx early because his sister was dx in 2003 with almost identical symptoms. (No previous ALS in the family to our knowledge)

We live with my youngest daughter in Illinois and with the our brother in law in Florida (Don's sister died in 2006). We sort of own 2 half houses!!!!

Right now Don can't stand or walk without much support from a walker. Outside the house he uses a wheelchair. He is on a BiPap at night and will soon be getting a feeding tube.

[jimercat]

Linda,

Very interesting about the infrared heat lamp! I've gone to a Reflexologist before - fell asleep in the chair, but woke up invigorated! Let us know if this seems to be helping your husband. I'm sure he doesn't mind being the guinea pig.

Y'all keep us posted!

[trying to stay positive]

Hi CJ and all,
I don't know if we can tell if the lamp is helping or if it is the vitamins and supplements or a combo of the two. The Dr. also has him drinking a protein drink everyday. The Dr. recommends whey protein. I also have him eat a whey protein bar everyday. So it is hard to say what is helping or if it is a little bit of all the things. All I know is that he says he thinks his muscles feel a little better since starting all of this. Even if it is all physcological, who cares as long as he feels even a tiny bit better. He can be a real bear sometimes.......grumpy, snappy, uncommunicative, etc.. I understand his frustration and even his anger, but it can be difficult to deal with. I find myself wishing that he would move on to acceptance already!

On a completely different subject here...........I have been reading various threads and have read several mentions of wives being paid to be caregivers for their husbands. Does anyone know what that is about? Is it through the government? If so, Federal, State, local? I am definitely interested in learning more about this, as I will be the primary caretaker for my husband anyway. Thanks for any help and info.

Linda

[CindyM]

Hi Linda- I think the program that pays in-home caregivers differs by country and by state. Here in Massachusetts, if someone has a disibility and needs in-home care, he or she can hire their own caregivers, (paid for by the commonwealth) and many choose family members. If I ever get to that stage and have to hire my husband I'm going to make sure he has a detailed job description and some really explicit time sheets to fill out! LOL, I can see me now, waiting for the Red Sox to finish (they play daily) before i get my nose wiped. :-D

Cindy

[trying to stay positive]

Hello again. You guys & gals are the best! Support, advice, helpful hints, etc.! Thank you, thank you! I have another question to put out there. My husband has limb onset and is having a hard time shaving. He is down to once a week, but even that is getting difficult. He is not ready to hand that chore over to me as of yet either. He wants to get an electric razor. Any advice or experience on a type or brand that may be the easiest for him to use? He has a hard time with gripping things, but lifting his arms is what is especially difficult. Thanks for any help.


On another note, we put our house on the market Tuesday night. Please say prayers for us that what needs to happen will happen, and it will all be in Divine Order. I have lots more to say, but have to go for now. Thanks again to all of you trully wonderful people.

Linda

[kelly]

Hi Linda,
My husband has been using an electric razor...after years of manual shaving. A huge tip is to not let the beard grow to long...or it does not cut. I always get nervous when I have to shave my husband with a real razor. He thought about growing a beard...but I knew it would be really difficult to trim at a later time. I will keep you in my thoughts and prayers that your home sale goes well.

[CindyM]

Another grooming tip: Electric toothbrushes and electric flossers work well for me. My main trouble is shampooing my hair. My fingers cramp and hands get weak after but this is also a task I am not ready to give up just yet. Cindy

[Gina]

Hi my name is Gina and this is the first time i have posted.My husband Glen was diagnosed by the first neorolgist he went to in 2004.We were referred to London for a second diagnoses from Dr.strong....whom would not commit to a firm diagnosis of als....we were given a probable diagnoses of als and the last time we visited him was last nov...at which time we were told because of his respiratory weakness that it may be a month or so before he passes...it is now one year since.We also had to sell our house because of the stairs and i was anxious to find a place that was wheelchair accessable to be prepared for the future.Glen is getting weaker everyday.He can still walk but only about 10ft and then he is grasping for air.He wears a bi-pap at night and uses his oxygen now all day.I go to sleep every night beside him and wonder if he will wake in the morning .This disease is the most cruel disease ever.I also feel very much alone although i have familly and friends it is hard to explain how excrutiating the pain can be to watch my husband decline and i feel so helpless.He was always the strongest and most fit guy for his age people envied his physic and now he looks so frail and weak and cannot even open a water bottle.Sorry to go on like this but my heart just feels so heavy lately and i know the end is coming soon and i am afraid!

[cheryilyn]

hi gina,
welcome to the forums. So sorry you and your husband are going thru this. There are a lot of great people here to help you thru this with support and advice.

[jimercat]

Gina,

I am so very sorry your husband has declined so. You will find suppport here from others in similar situations.

I hope you find strength to endure as we all have to. Let us hope for a cure or treatment very soon on the horizon...

[LUVELYROSE]

LINDA-
IM15 Y/O AND MY DAD WAS Dx WHEN I WAS 11 FOR YOUR DAUGHTER I THINK IT HELPED ME A LOT WITH MY DADS DEATH THAT I MADE MANY MOVIES OF US TOGETHER DOING THINGS WE LOVED TO DO. AND BE THERE FOR HER ITS A LONG AND ROUGH ROAD FOR US KIDS. MAY GOD BE WITH YOU IN THIS TIME.

-ROSE

[LUVELYROSE]

Gina-
I Know Exactly How You Feel. Its Like Theres A Brick In Your Heart And It Never Goes Away. Im Soo Sorry For You And Your Husband. May God Bless You.
-rose

[CindyM]

Hello Gina and welcome to the forum. As you say it is a lonely feeling to try to cope with this monster. In reality, there are a lot of folks who share and empathize but it ptobably does not always seem like that. I am so sorry for what is happening to your family. feel free to write anytime about whatever is on your mind. Regards, Cindy

[CindyM]

Rose, you never cease to amaze me with your maturity and compassion. Your Dad would be SO proud of you! BTW< how is schoo going this semester? Cindy

[Gina]

Hello again thank you all so much for responding to my post.You all sound like such a wonderfull group of people i am so fortunate and thankfull to have found this group.Today it is raining and i feel like the weather .My husband got up to drink his tea and is now back in bed again.He owns a cutlass convertable and an antique tractor.Yesterday he told me that he wants to sell them both to give the money to our children to help them purchase a house.His father had left the tractor to him when he died.He phoned his mother yesterday to tell her and after he hung up the phone he started to cry...he said i love that tractor....i think it is justt the sentimental attachement but he said i cannot take it with me.It just seems like everyday now he says something like that and i fall apart all over again...i am probably babblin i apologize i guess i am just so overwhelmed by everything happening so quickly.I must go for now as i have a few errands to run while he is sleeping.Thanks again for your support!!

[Icanmanz]

Gina, my heart ached as I read your post. When I got to the tractor part, that did it. I hate this disease! This disease affects so many people all the way around. I love this forum. I stated in an earlier post that every time I read a post from you guys, I feel like my son is standing next to me talking to me, sometimes in pain, sometimes accepting this damn disease, assuring me that he is fine with it, and not to worry, It's liitle things like that that run through my mind. What I am trying to tell you is that this forum soothes me, drives me to tears, breaks my heart all over again, opens some very serious wounds, turn to my Almighty Father big times, there is so much that I want to write down, but I do not want to make this post too lengthy. God bless!

Irma

[Al]

Hi Gina. Sorry about your husband. The tractor and car will probably appreciate in value if he keeps them longer. Unless the kids need the money now why doesn't he at least keep them until spring. The market will be better for them both then. It'll be snowing by next week here so there probably won't be many out looking for convertibles.
AL.

[Gina]

Hi Irma thank you so much for your reply to my post.From Reading some of your other posts i realized that you had lost a son to als.I cannot imagine how painfull that must be and yet you are on here supporting others to help them through thier own pain.God Bless you!You are an angel!!!!

[Gina]

Hi AL,My son said exactly the same thing and i agree except i think that glen thinks that he will not be around in the spring and we would all rather have him sell the tractor and the car because they were both his pride and joy and if he were not here it would break my heart to have to sell them myself.But maybe i will bring that point up to him.As for the snow i hope you are wrong about that im not a winter person love to be outside but not when it is cold!

[swmn]

Hi Gina - my friend was dx about 18 mo. ago- he is in the same condition and his wife feels as you do. I am a close friend and I too, feel alot of the sadness as my friend has everything taken from him. I hope you will take seriously all the people who offer help. People around you will want to help and all you need to do is ask - they are waiting to help, but will not want to be intrusive either. As a Friend who is willing to help any way I can, I hope you and your husband will find comfort in the daily suppport of friends.

[Gina]

Thankyou so much for responding to my post.I guess it has always been hard for me to ask for help but i am learning very quickly that now i have no choice but to ask.My familly has been wonderfull to me and glens familly have been helpfull as well.My children are always ready to help but they all have small children so they do not have that much time to spare either.My son and his wife just had a new baby two weeks ago and he is on paternity leave now so he will be able to help me out more.I find the hardest part of dealing with this disease is the emotional roller coaster. I do talk to my children about it but thier dealing with thier own issues and i have a tendancy to try to protect them from it.Anyway i guess what i am trying to say is that the emotional aspect is where i run into trouble so i am hoping that i will find the support and a safe place to express my feelings without worrying about upsetting my friends and familly too much......gina

[trying to stay positive]

Hi Rose,
You sound like an incredible young lady. Thank you so much for your message. Movies sound like a great idea. I have been taking quite a few pictures lately also. I purchased a digital recording device with the hopes that my husband will make messages for our daughter to be given to her at various milestones in her life. Such as graduation (be it college or high school) her wedding, the birth of a child, etc.. That way even if her dad has already passed, she will hopefully still be able to feel that he is still "with her" at these special times. Everytime I think about this or talk about it I start to cry, but I think it will mean alot to her. She doesn't say alot about the disease but I see her watching him and I can tell it is breaking her heart. Sometimes I feel so helpless to help either one of them.
Thank you, Rose, for caring enough to write. I think Cindy is right. Your dad must certainly be so proud of you! Linda

[Poco]

I will give you my advice now that I lost my husband in July after only a year. I became a very effecient caregiver, read the books etc and made sure he ate right and all the functional things that needed to be done from insurance, to running the house , but what I failed to do was give him the emotional support from a wife's perspective. I was so busy researching etc. when I had a free momnent and trying to figure everything out that I burned out and just wasn't there emotionally. I never anticipated him dying so quickly and if I could go back in time I would have held him more, read to him when he could no longer turn the pages. played games with him. When I finally planned a trip he was no longer able to go on one, too weak and too tired and afraid to be away from his own bathroom or hospital bed. I was so busy taking care of all his physical needs and being a perfect nurse that somehow I lost touch with the most importnat part of our relationship. We did date night once a week at first but then that became too much. You have to hug him because he can't hug you back with paralyzed arms and somehow the hugs got lost and were replaced with dressing him instead. That is what I live with everday. He knew I loved him but a different relationship evolved and if I could change anything it would be the quality time we spent together, and not all that other stuff that didn't matter anyway because the disease took its own course in spite of all my research. I don't look back and think if I only tried this remedy or that, I look back and think why didn't I hug and kiss him more and act more like a wife instead of a robot. For you it will even be harder because you have a child at home. Just try to build all the quality memories you can as a family and make that is number one and all the rest can just wait another day.
Phyl

[CindyM]

Phyl- No matter how much you did you can always look back and wish you had done more. At the end of the day we are only human. Please take peace in the knowlege that he knew from your nursing care how much you loved him. Look at it the other way around: you could have spent hours reading and hugging him, only to have him wish just once somebody would wash his face! :) Just don't beat yourself up too much, OK? Hugs, Cindy

[jimercat]

Phyl,

I agree with Cindy. Please don't feel guilty about the "should'ves."

But, I do appreciate you as a caregiver showing us yet another perspective on how ALS affects relationships between husband and wife. Believe me, I have heeded your words, as I find myself in the same position.

Thank you so much for sharing that with us.

[Just J]

Linda thank you for your post and listing the history of your husband. My husband has yet to be dx but like you, after 2 yrs and 2 operations and no dx, we are now realizing this could be something more serious (and we thought a dx of MS would have been bad). We will see MND specialist in early January and hope all of the indications are wrong. Though my gut tells me otherwise so I will remain hopeful until the docs throw down the guantlet. Stay positive and support your man in every way that you can. Its not easy and won't get easier so enjoy smiles and laughter as much as possible. My prayers are with you and your family.

[Brenda]

Hi Linda so sorry for you, my best suggestion to you is to get involved with a clinic in your area, The clininc at RWJ in New Brunswick NJ was wonderful, everyone was so helpful and always there for us.
My husband went within 14 months of diagnosis, but may have had it prior to us meeting in 2005. Get your daughter involved in support too!
Brenda

[Rachel]

Please click one of the Quick Reply icons in the posts above to activate Quick Reply.

[Al]

Think your message went astray Rachel. Try it again. Click on the pen and paper on the right side and type in the box and then click post quick reply below. Welcome here as well.
AL.

[freddiesnetty]

poco,
thanks so much for that post, it is just what I needed.especially today,If any can believe this we are in an argument, His has a "past". He was a famous musician, Irma knows of him. When he was an entertainer he was a "player" I have to deal with his groupies STILL!! It is aggravating because I am the one dealing with all of the "dirty" work. I do sometimes get so busy with all the care. I do work outside the home and am raising my 2 year old granddaughter. I think that is what keeps "Pappy" going sometimes.
I am new here, you couldn't tell though as much as I post (and ramble) SORRY 'bout that. I have just found that this is where I should be, you can talk to other people about your Pals,every one seems they just don't get it or sometimes not even know what it is. So here is so comforting, this is the second place I come home from work, to hubby first. But you are right, I hug, but not as much as I need to due to fatigue, but I know there will be a time for rest later, so lets keep HUGGING Much love to all here and I pray for all of us. THANKS!!
Annette

[Gina]

Hi again,I just came home from getting coffee for my husband and myself and their was a message on my machine from my sister telling me that my friend nancys husband died last night.He was diagnosed with cancer less than three months ago he was so positive that he was gonna beat it and so was she and now dammit he is gone.I am just so sad and angry too it is just so unfair.My sister and her daughter have gone to stay with her for a while and i cant do a damn thing because i cannot leave the house for long.She lives about 20 miles from here.I wish i could help her but it seems i cant even help myself .I guess to be honest it scares the hell out of me how quickly these things can happen and i know that it wont be long untill i am in her position.I hope this letter does not seem insensitive because i am also thinking of myself ....My husband is on oxygen most of the time now and that scares me.He is still sleeping and when i walk by his room i just look in to see if he is still breathing.I pray that god will give me the strength to stay positive although im a little $#&^% at him right now!!!It didnt seem to help in thier case so makes you wonder!I am sorry im probably not making any sense but i just needed to vent because i feel like screeming and cant stop crying!

[jimercat]

Hey Gina!

I'm so sorry about your friend's husband. Will you be able to find someone to care for your husband so that you can go be with her? It's just another thing to think about as a caregiver that other people take for granted. The predicaments that could arise while caring for a PALS I guess are endless.

You are not insensitive! You are a caring wife that is looking at reality. And some days reality really does suck!:evil:

You say your husband is on oxygen, do you mean a vent?

Take care. Do something for yourself today...

[Gina]

jimercat! Thankyou so much for your quick reply and support.My husband uses a bi-pap during the night but has an oxygen machine that he puts on first thing in the morning and wears most of the day...it makes its own oxygen.He chose not to have a vent.I cannot leave today but i plan on asking my daughter in law if she will take care of my husbands needs so that i can at least go to the funeral.My sister and her familly are with her right now.I am just trying to get through the day but i am still in shock.I keep thinking that thier has to be a mistake!Bless you for being thier when i needed someone and understanding!!!!

[CindyM]

Hi Gina- I don't blame you for seeign all side to this new loss. You are not being selfish- this is all a little too close to home, if you ask me! I hope you get to be with your friend, either now or later on when the reality sets in for her,which they say will be in about 6 weeks. Both of you will be glad if you are able. Cindy

[Gina]

Cindy thankyou so much for your quick reply.Although i did not know my friends husband well nancy and i had been talking on msn. for some time now giving each other support and encouragement.She could realate to every emotion i was feeling and i to her.I had a really rough day and am still feeling very angry and discouraged.I was talking to my sister again tonight after she came home from nancys and she told me a little more of the story and how it happened.It was so horrible and she was all alone.He went outside on the back deck under his favorite maple tree and collapsed she screamed and the neighbour who was a firefighter came and gave him cpr untill the paramedics came but he was allready gone.The coroner said he died instantly.I wont give any more details but it was awfull....i think that you are definately right about it being a little too close to home .Again life sometimes is so cruel !!!!!I am definately taking this too hard and i wonder if i am crying for her or crying for myself or both:cry: because it something i will have to go through too and I dont know if i can handle it!!!!!!Gina

[Al]

Hi Gina. I'm sure Nancy knows you would be there if you could. She knows you have problems of your own to deal with. Don't feel guilty. You'll handle what comes your way when it comes. Worrying about it now doesn't really help. Cry when you have to and vent when you have to. They're both healthy emotions as long as you don't let them consume you.
AL.

[Icanmanz]

Phyl, I really don't know where to begin. I read your post, and as I was reading it, I was thinking to myself, "What an angel of a lady. Such a sweetheart." When I got to the part where you wished you had done this or that, I thought to myself that we all go through the same thing. You did so much already. You took such good care of him from what I read, and like me, you were shocked that he died so unexpectedly. I, for one, thought that I was going to have my son around for another year or two, and when he did die, I was left with a broken heart not believing it. Als is such a dreadful disease, and only folks that don't know about Als, don't have the faintiest idea of the torment we go through, and then left with a broken heart that will never mend. May God bless you, and grant you peace.

Irma

[Gina]

Al.thanks so much for your words of wisdom.Your words keep going through my head "Dont let it consume you"...and that is exactly what was happening to me.I am still fighting to urge though it is still so fresh in my mind but i figure if you have als and can make it without the urge to let it consume your life then maybe i can too.God Bless you and i hope you are having a good day!

[LUVELYROSE]

Cindy~ Thank You I Get That Sort Of Thing A Lot From Adults, School Is Going Great Thank You For Asking.

Linda~ I'm Sure Your Daughter Would Love The Movies. My Dad Wrote Me Letters For Each Step In My Life Each Time I Read Them It Helps Me Remember Him. On All Of The Holidays That I Would Have Spent With Him Like Christmas, His Birthday, Fathers Day, Etc. I Put Little Gifts And Cards In A Box For Him As Kind Of A Memory. And It's Not At All Selfish To Think That Way Its Natural.
With Love,
Rose

[sharyn]

My husband was diagnosed 3.5 years ago. He was only 37 when he was diagnosed. We have two young daughters, aged seven and eight years-old. My husband is now completely confined to his wheelchair. He cannot move his arms, he can barely talk, he cannot move from his wheelchair to his hospital bed, I must do it with a Hoyer lift. I also must use the Hoyer to put him on the toilet. He has just begun to have problems with pushing to make a bowel movement. I have to give him enemas in order for him to have a movement. This whole disease is so sad. I often feel guilty because my girls are having to grow up so quickly.

Phyl, what you said made so much sense to me. My husband said to me the other day, "You are my nurse and I am your patient. We are not husband and wife anymore." It is so true. I, too, feel as if I go through my day like a robot. I do what needs to be done. When I have a free moment, I'm usually exhausted. It has been a long time since I have given him a hug. Your post really hit home with me. I have worried that I will someday (soon) think, "If only I had done this ... would he have lived one more day?" Instead, I should be thinking about giving him more hugs.

-Sharyn

[jimercat]

Sharyn,

don't be too hard on yourself! This is tough!!! We are only human and can endure just so much.

Maybe we should get buttons made up that say "Give a PALS a hug!" so we can be reminded of why we are caring for our PALS to begin with!

[CindyM]

Hi Sharyn, CJ is right. We don't have control over any of this. Don't make yourself crazy thinking you can prevent a train wreck that will happen in its own time, regardless of what you do.:-D Cordially, Cindy

[Gina]

Hi Sharyn,Sounds like you really have your hands full....wow i dont know how you do it!My husband also has als.and at times i feel the same as you ....like i am the nurse and he is my patient...lately my life has been in such turmoil that i have been so needy and not had time to give anyone any support.Now that it has settled down a bit im hoping to have more time to give support to others.Try not to beat yourself up over the things you cannot do it sounds to me like you are doing more than you can at this time...Bless you and your husband and your girls...take care Gina

[Icanmanz]

sharyn, read your post. Bless your heart. You are an angel of a person for taking such good care of your husband. Keep us posted, dear, and God bless.

Irma

[hboyajian]

Thanks for sharing that. Not all doctors suggest the vitamin routine, and I think good nutrition is important, especially for those who are chronically ill with anything. As you say, it can't hurt and maybe it will help a little. When my dad was first diagnosed, I went looking for protein drinks and high vitamin food supplements to add to his smoothies (he was unable to swallow solid food). Since there was nothing else I could do, it gave me a way to take some small action.

[Pamela D]

Hi Linda,
My name is Pam. My husband was diagnosed in 9/07 with possible ALS by our local neurologist. He was referred to 2 more neurologist before getting a final diagnosis on 11/05/07. I can so much relate to all of your questions and worries. We have been married 26 years. This is my first time writing in here. But I do spend a lot of time reading others comments. I am tring to read a lot of info from MDA that was sent to me also. THis is al sooooo overwhelming and I don't know where to start.

[Al]

Hi Pam. Welcome but sorry you have to be here. Feel free to vent share or ask any questions.
AL.

[Icanmanz]

Pamela, just read your post. My heart goes out to your family! Prayers your way. Fell free to ask questions, share emotions, prayers, whatever, just don't be shy! You'll get used to the forum, and its wonderful members. Have a blessed Thanksgiving, as you can see mine is going to be kinda low key. My son already called me this morning, and he wants me there early enough to where we will visit my son's grave, and "take him a small plate," and pray. We are going to do this before we eat. Wow! these holidays! What can I say?

Irma

[trying to stay positive]

Hi Pam,
I am so sorry for your husband's diagnosis. It most certainly can be overwhelming, especially at first, as you are still in shock. How is your husband handling the diagnosis? Are his symptoms disabling at this time? I know I spent the first 4 to 6 weeks in a state of shock. I am not prone to crying, but found myself crying out of nowhere those first few weeks. It was like my emotions had a life of their own! Then I realized how many things I had to figure out, take care of, and deal with! From disability, to insurance, to obtaining assistive devices, and on and on. So to keep a small portion of my sanity intact, I try to focus on the most immediate need, and deal with the other stuff when I can.

Do you and your husband have any children? How about family and friends that will be willing to help? This forum has been a great help to me. Everyone here is so understanding and helpful. I hope that you find it to be a help and support also. Pam, you and your husband are in my prayers. Linda

[jimercat]

Hey Pam!

So sorry your hubby was dxd with ALS! You will find a lot of support here! Just take one thing at a time as it comes up or you will freak yourself out. (Although you will need to plan ahead financially.)

It will take a while for you both to get over the shock.

Good luck and take care!

[vmd]

Gina and Pam:

Sorry to hear about your situations. Yes, life can be sad sometimes, but it's also much about attitude. I know I often need help with a pessimistic attitude that is always circling around my persona.

God does provide, however, and He gives us the strength to endure.

[Thumbs Up]

Hi Linda,

I just recently joined myself. I don't have ALS, but lost my mother and sister. My sister was 49, her son was 12. I remember asking her if she was angry. She said it is in God's hand, I wish I could watch my son grow up, but God must have a reason that I can't. She was not religious but she put her trust in God. She said she would take every day that she had left and enjoy them.

There are people out there who care and know what you are going thru hopefully it will help thru this horrible disease.

Give yourself a big hug.

[hope]

I believe that every time we do something for our loved one we are hugging them and showing them we love them dearly. It may not be the way it used to be like before, holding each other is not always just with ones arms, a hug can be given by just taking care of all their needs. Every time I help feed my husband it is a hug, everytime I dress him, it is a hug. We are always hugging it is just not the same way sometimes. I hug my husband as much as I can, we hug with our hearts to now. He cannot use his arms so my hugs that are given back are hugs from the heart. This illness is devastating and we as care givers and wives are doing our best.

hope.

[CindyM]

What a great way to look at it. I like that viewpoint. thanks for sharing. Cindy