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hope

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Oct 1, 2005
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Hello everyone,

I have been posting here for a little bit. It was recently confirmed that my husband has ALS by Dr. Michael Strong. For six months we were told he has this illness but asked for an expert opinion. Like all of you we were devastated. We have however tried very hard to cope the best way we can in what we are in. Hearing it again last week was like living it all over again. The problem I have here today is my husband has fallen into a deeper depression. I can see the fear in his eyes, it breaks my heart because I love him so. I try to encourage him to post, he does not know what to say. If anyone has some support today they can offer to hell him feel a bit better I would be so grateful. He is a strong man but as you know the fear of the future and what to do now is heavy on his mind. Thank you kindly for listening.

Sandy. Hope's wife.
 

hope

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Messages
230
Sorry in my post I meant to say help not hell, I apologize.
 

janicebuf

Active member
Joined
Jul 6, 2005
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Loved one DX
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family
Country
US
State
ny
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east amherst
hi sandy, so sorry about your husband and his sad news...let me tell you that i have lost at least 25 family members to als and now my brother age 46 is battling it. sandy, of course your husband is sad and scared and everything else. this is to be expected, it is no different than feeling the emotions of a real death. he is losing parts of himself and how can anyone deal with that? you too will experience these emotions but right now you are concentrating on hope. that being said, you will find that he will accept this as time goes on. there isn't anything you can do but validate his feelings. don't 'sweep them under the carpet' and pretend they aren't there. let him feel them but also keep him 'busy'. i read recently that when someone is diagnosed with a terminal illness don't think for a second that they aren't thinking of this every minute of every day. when i get down, i try to think how lucky we are to have lived this long, somewhere there is a child that doesn't have a chance at life because of a terminal illness, or the teen who gets hit by a car, and then i thank God for all of His blessings.
you know, just this morning i read a wonderful article written by a woman with als who lives with a feeding tube and vent and she doesn't understand why this is treated as a terminal illness and yet someone who is a quadrapelgic is given everything to continue to live and he/she is not considered 'terminally ill.' i don't know your views but i was wondering the same darn thing. what's with that? everyone (except my brother) in my family chose NOT to be vented~had they known what we know now, with all the advances in saving lives, they certainly would have chosen life. God has each of us here for a reason, Hope is no different! tell him he is here for a reason and maybe he doesn't know why yet, he will! he has choices, he can live for many years if he wants, or he can choose to let nature take it's course. look at chris reeves! what a fulfilling life he led. he paved the way for potential trach patients. today is tough, know that tomorrow will be better, life is not fair, believe me i know. after all this in my family i lose my 41 year old sister to breast cancer~what a kick in the pants that was! to make matters worse, she headed the als support groups here!

tell hope to get on this computer and talk to me, i'll get him to laugh! does he like dirty jokes? i have many funny stories just within my family. when i went to the hospital yesterday to see my brother (he's improving, way to much weight loss!) i was telling him so many funny stories, my sister in law said she hasn't seen him that happy in weeks! so make him read this and tell him every one on this forum is absolutely wonderful and he will enjoy 'talking'. these people are addicting!

keep doing what you are doing and don't let those negative thoughts in your head even for a second. tell them they are not welcome! keep in touch...

janice
 

dana

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What great advice Janice! What you said about a quadrapalegic really hit home with me. I have a cousin who is 29, and when he was 18 he dove into the ocean and broke his neck. He is a quad who lives his life in a wheelchair. He has some use of his arms, so he can drive his motorized chair around, and he can eat. We feed him, but he can still eat. When I look at him, I don't think "poor guy has to live the rest of his life like this." I look at him as that was the hand God dealt him, and we all have to make the best of it. We treat my cousin as a normal person. We don't show pity on him just because he is in a chair. I tease him like I do the rest of my family. In fact, I am sure I probably get on his nerves at times. hahaha He has actually been such a good source for me because I have been able to ask him questions from when he had to have a trach and a ventilator. (He no longer has either of these). My cousin told me that the more "normal" we treat dad, the more normal he is going to feel. What you had to say about that story is such good advice.
Dana
 

janicebuf

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Loved one DX
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family
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US
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ny
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east amherst
thanks dana, let's hope this helps 'Hope'! janice
 

John1

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Joined
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Hi Sandy,

The diagnosis of ALS is devastating and there is no way to minimize it. When I got mine, out of the blue, it shook me to my very core. If you are asking for advice, I believe the best course is to give over to the pain and the fear and not deny it. Better to get it out, cry, wail, curse God, whatever he and you need to do. I can say though, that looking back on my illness, the worst days by far, were those early black days. It does get better, life does go on and most learn to cope and adjust. Even though today my body is just a shell of what it was when I was diagnosed, I am much more content and happy.
 

Granny

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May 18, 2005
Messages
205
Hello Sandy and Hope,
Janice did give good advice. I just wanted to let you know that this forum is such a help to me as a PALS and to many others. The advice is good and so is the humour.
You can know that we are thinking of you and hoping that you can work through this awful time and, I know this sounds trite, but things do get easier to accept. It takes awhile for your head to get around all this stuff. I was able to accept the diagnosis after awhile, and live each day at a time, Every day is not wonderful, but most are. I find the support of good doctors and other medical people make things easier. Hope you have this support.
Hugs and prayers, Leah
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
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On
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Guess I'll throw in my 2 cents worth too. When I was first diagnosed I had been investigating symptoms on the internet for 6 months. I pretty well knew that I was screwed as they say before the doctor told me I was. That lead up time I think helped me to cope. Everyone thinks I have such a great attitude but I usually laugh and say you don't see me in the middle of a field in the middle of the night screaming Why Me to the moon. That hasn't really happened but someday's I do feel like that. Possibly living with death and destruction for 33 years as a firefighter made me realize that things could be worse. I don't have any great words of wisdom on why me or how to cope but I try to do as my 91 year old dad says " Just do the best that you can".
Lee says that maybe I got this so I could help others on this forum. When I got here it was starting to falter and now we have a lot of new members. That's a bad thing in a good way. Sort of a catch 22 situation.
Hope: there are going to be terrible days when you just don't even want to get out of bed.You have to push yourself and remember that your family loves you and wants to be there for you. If you want to talk we can arrange that. Take care. Al.
 

hope

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Joined
Oct 1, 2005
Messages
230
Thank you. My wife told me she would reach out for support this morning because I was feeling so lousy. I just do not know what to feel and what to say. I am not someone who speaks easily regarding how I feel but see all the replys made me feel better today. Thank you again, I guess this is one battle in my life that I have to admit my wife and I can't do alone.

hope.
 

rcharlton

Moderator emeritus
Joined
Jun 20, 2005
Messages
610
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
City
Toronto
Hi Hope,

I think our stories are pretty similar.

I had a preliminary diagnosis of ALS in June of 2005. This diagnosis was confirmed by Dr. Strong in November of 2005.

I first saw Dr. Strong in August 2005 and he noted a couple of symptoms not typical of ALS. He ordered another EMG and MRI.

Leading up to the Nov appt., I half hoped and expected that Dr Strong would tell me that the original diagnosed was wrong. I started imagining not needing to worry about my diet or the future, about returning to normal; however, when he confirmed the ALS diagnosed, I had to relive all of those awful feelings I felt with my initial diagnosed.

I think the key is to stay active - give your brain something to think about other than ALS. Don't let ALS take over your life. If you are no longer working, volunteer somewhere - do anything to keep yourself and your brain occupied - instead of dwelling on ALS.

I've said this before - the one common denominator of long time ALS survivors seems to be that they have all gotten on with their lives to the best that they are able.

There is also so much research going on right now - and we seem to be really close to some viable treatment. My fiancee is in Med School - and she and one of her classmates (who believes she has early ALS symptoms) spend a ton of time checking up on all of the research - and we seem to be close on so many fronts. They are both very excited and very positive about the future.

In a lot of ways I've never been happier - I appreciate everything around me so much more since my diagnosed. In some ways it was a re-birth - and I realize how much I previously took for granted.

You have a choice be positive or be miserable. Even if you need to complete delude yourself - just stay positive.

So just hang in there - we are all in this together.

Richard
 

hope

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Messages
230
I would like to say thank you, all of you for helping my husband and I today. We are going to keep trying hard. This year has been unbelievable. In the last few months my father died of cancer, my cousin recently passed away from a sudden heart attack, my friend died of breast cancer. It is been one trauma after another, my husband thanks you all again for the kind support here today. We will fight the fight.

Sandy.
 

Carol Deboer

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Joined
May 7, 2003
Messages
343
Hi Sandy and Hope,

Just live for the moment. Live for the laughs. Live for the love of your family. Live for the hugs you can still give and will always receive. Live for the tears, they will wash away your fears and frustrations. Live for the all the things that you do not want to give up just yet. Live for the all the tasty things you enjoy to eat and drink. Live for your friends. Live for the favourite music you love to listen to. Live for all the books you still have to read. Most of all live for the hope for a cure. Remember, it is what it is. It is what you make it. Your fears and sadness will eventually give way to calm. Your depression will lift and you will freely laugh and enjoy everything again. You may enjoy things in different ways now, but, nonetheless still enjoy them. This a sad time, a very depressing time, I know only too well. However, you will have many great days and times and you will be okay. You have a loving wife and family and you my dear man, are so lucky. Count your blessings, you will find that you have many. I always tried to find the small blessings in this als thing, and we thank God, found many big ones. We are all here for you and we will listen, you can say what you want, vent all your negative and positive feelings here , and none of us will judge. We are all here to support each other at all stages of this game. Keep your chin up. Things will fall into place, and you will see that your calm will come. God Bless.

STAY STRONG......

Hugs to you both, Carol
 

hope

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Joined
Oct 1, 2005
Messages
230
Carol when I read your posts I cried, you write beautifully. I clung on to each word of hope. My husband thanks you for taking the time to reply to this post, he thanks everyone here, you are all so kind and caring. You seem like a very strong woman. I am trying really hard to be strong. The last few days I fell down, I yelled out loud. I did not mean to it just happened. I looked in the mirror at myself and I could see what the last few months has done to the once blue eyes that were full of life. They look empty and sad. I have to get that back for my husband and I must try even harder to live in this nightmare. Today is a new day. The mistakes I made yesterday I will not make today. I will hug my loved one and talk about the warm weather that is coming and the beautiful gardens we have that we can make beautiful. We are writing a book on our experience with this, this keeps me busy in the evening when it is quiet and my husband is resting. Thank you again for your warmth and kindness it means alot to both of us.

Sandy.
 

Granny

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Joined
May 18, 2005
Messages
205
Hi,
Thank you from me also Carole. Your words are always helpful. It was great to read them on a blah morning!
To Hope, I am glad that you are concentrating on the warm weather and your gardens. And lots of hugs!
You will get through this with love and prayers and support from family and this forum.
Take care of yourself as well as your husband. Yelling is ok when you need to do it. Sometimes we have to get things out. Don't beat yourself up about it. Holding it in makes it more difficult. I am so glad you are writing a book!
Love and prayers, Leah
 

Carol Deboer

Distinguished member
Joined
May 7, 2003
Messages
343
Hi Guys,

Glad to be of some help. I am still trying to heal myself, and tht is so hard, however, my calm is beginning to take way of the grief. I am heading to the sun tommorrow , so I will hope everyone will be okay and I will write when I get back. Love and hugs to all.

Carol
 
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