Just Been Diagnosed. My wife and I are devastated.

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hope

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I found out only recently that I have als. My wife and I are trying to come to terms with this. We know very little, it started as mild twitching in one arm in my bicep area. Over eight months twitching is now in both arms, weakness in one hand and problems with motor skills in fingers of one hand. It took me a while before coming here due to fear but I found it a very lonely painful time.

hope.
 

Jane

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newly diagnosed

Hello Hope, I am sorry you have been diagnosed with this disease.
It is very normal to be frightened. There are so many changes and it seems people adjust to one when something new comes along.
This is a very good site to visit, many of the people are ALS sufferers, and will have a great deal of info, and support to offer you.
If you have not already registered with your local ALS Society I would urge you to do so.
They will be able to help you and also direct you to a local support group meeting. There may be a support group facilitator who will visit your home and explain the Society and how it can be of help to you.
Please continue to post on this site.
I will pray for you and your family.
Jane
 

Jessie

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recently diagnosed

Dear Hope,
Just wanted tosay a few words of encouragement at this difficult time for you and your wife.
My husband was diagnosed with ALS last August after almost a year of ominous symptoms.You will find so much support and practical help from the ALS society.
Accept offers of help from friends and family. It makes a huge difference to your situation and eases the helpless feelings that they have.
Take it a day at a time. Keep life as normal as possible. It is so easy to let ALS permeate everything and spoil the little pleasures of the day.
I hope you will find that ALS brings the two of you closer together.
Though we were close before, the past few months have been a time of real togetherness.
I think ALS is rather like a war. You would never willingly want to be in one, but now that you are in the battle of a lifetime, there are huge lessons to be learned. Both of you will find you are stronger than you ever thought youcould be.
This ALS forum is a source of so much practical info, encouragement and amazing outbursts of humour!
Wishing you strength and courage for your trials.
Jessie
 

dsmode

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dear hope, your post brought memories of our devastation and despair. thank God feelings are not permanent.[sp] i will be praying for both of you. its not an easy road, but a road full of discoveries about yourself, family, and friends. dar in ohio,,,diagnosed1/03
 

TBear

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Hi Hope:
Sorry you are here. You're welcome here and yes, it its the war of your life with several battles. You'll need a good support structure (if which this one is a good start), good mediaclk lsupport, and of course a good sense of humour.
Where in the world are you from? It helps with suggestions.
Cheers
T.
 

jc55

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Hope, you are not alone. My wife's brother-in-law was diagnosed a year and a half ago. After a year of unknown symptoms my 28 year old wife was diagnosed 2 days ago. We initially though it was carpal tunnel in the very beginning. The Dr. told us to get a lottery ticket(in a sensitive way) as the odds of her and an unrelated family member both having it were unbelievable. We have a 3 and 5 year old daughter and I am just heart broken as to what the children may have to go through. I found this site today and hope to find the strength from God and others going through this...People such as yourself.
My wife is so strong. She is ready to move forward and live life to it's fullest and that gives me strength. I have been in denial until now about ALS, while she has known in her heart for a while that this was indeed ALS.
 

hope

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jc55, I am so sorry about your wife having this illness. My wife and I feel like you do we are just devastated and we really have been on a roller coaster with our feelings. We are trying hard to cope with it all. We do not know alot but for now we are trying to live one day at a time and try to come to grips with this. I can honestly say I do not know what I feel some days, it is like being in a fog. It is a nightmare. I feel we were given the diagnosis then left out on a clothesline to figure it all out. I know the doctor was kind but the support they wanted to give us at the time was not appropriate for us. We did not want to here about the disease, we needed time to accept what we have heard. I am glad you found somewhere to share your fears like I.

hope.
 

Al

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Jc55 sorry you are here. Hope is a good name because we survive on hope. It is not an easy disease and you will some days wonder why me? I don't know if you believe in God but it helps some to get through the days and the nights.
Humor helps some of us as we ocasionally play silly a*s. You do what you have to do to cope. Some of us want to know everything right away. Others want to wait a while to absorb what is going on. When any one wants to talk or ask questions we are here for you. You are not alone.
We care. We've been there done it and some of us have been around a long time. Some of us a short time but we have a good group ready to help when we can.
 

MLECOLE

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Oct 10, 2005
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My husband was 37 years old when he was diagnosed with ALS in 2001. We too were devastated, and I can understand where your hearts are. We too have 3 children. It's a TERRIFYING time, I know that and I will keep you in my prayers. My husband is now in a power chair full time and on a ventilator. He basically can't do anything for himself anymore, however, he can still speak and swallow. The things I know now that I wish I knew then were:

1. Don't look at ALS like it is a death sentence. When my husband was diagnosed I woke up every morning terrified that it was going to be a horrible day - my head would be spinning - dear God what is going to happen today - I can't handle this - it isn't fair - ok, he just said something about his leg hurting - is it in his legs already? It was insanity. Someone finally told us something that stuck in my head: No one knows the future. No one can predict when anyone will or will not die. I've known perfectly healthy people who woke up one morning and were dead by the end of the day - not from ALS or illness, but accidents, cerebreal hemorrhages, heart attacks, etc. Young people and old people, no one is exempt from something horrible happening to them and ending their life before they're ready. No one can predict your future or anyone elses. No one will be able to tell you how fast or slow you will progress. I guess what I'm trying to say is that No One Is Guaranteed Tomorrow, whether they have ALS or not. One thing that I have learned is that EVERYDAY should be lived, not just existed through, but LIVED. If you have been waiting to take that great holiday, don't put it off, TAKE IT NOW. And when you're done with that holiday, start planning a future one. Be sensible, but don't let ALS rule your life. Keep control as long as possible.

2. Knowledge is power. Attend support groups and develop friendships with people who are positively living with ALS. My husband had a hard time in the beginning accepting his diagnosis, didn't want to attend support groups (he didn't want to see people on ventilators or in wheelchairs) and only recently in the past year or so began reaching out to others. He now has a whole community of friends that not only have helped him, but that he has helped as well.

3. Don't live your life in absolutes. My husband always said that when the time came he absolutely would not go on a ventilator and would not get a feeding tube. Well guess what? He has both. When the time came, he decided that he wasn't ready to leave us, so he adapted. He got his feeding tube and earlier this year decided to get a trache and vent before his breathing became too compromised (thus not having to be trached and vented in an emergency situation). And as his disease progressed, we learned to handle one thing at a time. When you lose an ability, you grieve it, adapt to the new situation and keep moving on. Don't concentrate on what you have lost, concentrate on what you STILL HAVE and be grateful for it. I hope I'm not sounding harsh, I don't mean to. I just want others to know now what I wish we had known then.

4. Get adaptive equipment before you need it.

I hope this helps. God bless all of us - the caregivers and most importantly those who have received such a tough diagnosis like ALS.
 
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Al

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Wery well said. You've put in a few paragraphs what a lot of us are doing every day. Some of the new people here are not sure how they will cope. Some of the things you have said can be read in different places and can come from doctors.
Until you've been there and done it it doesn't seem real. Thanks for sharing your knowledge.
You may have some answers for people about feeding tubes and vents. This past week some were asking about vents and all we could do was send them to a website. No one with a vent was here to help.
We hope you stick around and share what you know.
Al.
 

MLECOLE

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I'll be happy to help or answer any questions I can. ALS turns your life upside down and no one should ever feel like they're alone and having to deal with everything on their own. :wink:
 

Snowbird

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Oct 7, 2004
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Hi Hope!

There is some really good advice here that people are sharing with you.

We are angry, hurt, frustrated, cranky, etc. However, once the negative emotions have all surfaced, then it is time to accept this terrible sentence, and continue to live life to the fullest.

Spite the disease. Try not to let it control you. Accept it and make the most of your precious moments together, every one of them. Only allow yourselves a small amount of time to 'kick the wall' and then turn your energies into being happy.

My husband did not accept his disease until about 2 months before he passed away. Then he had an extreme 'calm' come over him. If he had accepted it sooner, he may have been more happy instead of letting his anger rule our time together. He was excellent with the nurses and with visitors, but not always with me. It was tough.

Just concentrate on positive thoughts, and they are always there if you look for them. Don't let the devil even get near your minds. Kick him out! We all have so much to be grateful for, and so much that we can still do to make ourselves happy and to make others happy.

You are strong, and we are all here to help you along the way. When you fall down, we will pick you up, just as you would pick us up if we fell down. That is how it works.

Share your problems and issues with us. We will all try to help.

God bless you.

Pat
 
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asd724

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Oct 17, 2005
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Hope,

I don't know where you live, but Lyme Disease and ALS can have the same symptoms. (In fact Lyme Disease can mimic over 200 different
diseases.) Read the sites on Lyme Disease as well as the ALS sites. My husband has Lyme Disease with Mercury Poisoning but it may be ALS as well. We are hoping to clean out the toxins and clear the Lyme and praying for a miracle to help. Lyme Disease can occur almost any where in the US, not just the Northeastern US. Also, it doesn't have to start with a bull's eye rash.

Many Blessings,
asd
 

Snowbird

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Oct 7, 2004
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Hi Jerry! I don't understand your last statement. What did you mean?

Jack did not have all the symptoms either. No bulbar involvement. He was tested in Winnipeg by 2 different neurologists, and also in Toronto. They all said it was an MND (Motor Neuron Disease) or a mimic ALS. He was not diagnosed with ALS until the last few months. The good part was that we were still able to talk to each other until the last few days when he was heavily sedated.

It is so good to hear that you have such great spirit! You are a true inspiration to all of us. Thanks.

Pat
 
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