Help hubby age 31 just diagnosed .. I'm so lost

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Angelosangel

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CALS
Diagnosis
09/2015
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US
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Califirnia
City
Coarsegold
I don't know why I'm on here. My husband was diagnosed last Tuesday and doesn't want to discuss ALS at all. I feel so lost and mostly sad. I love him so much and we have three small children ages 7,5,2. I've always been a stay at home mother but I recently starting working. To think about our kids and future is such a gut wrenching feeling, but them thinking about not having my husband and see him twitching I lose it. I ugly cry so much! I doesn't feel real.
 

Mellen

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Oct 1, 2015
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Loved one DX
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08/2015
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Wytheville
Your honest post tore at my heart. I will be praying for you and your family
 

LeprechaunSean

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Sep 27, 2012
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PALS
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01/2011
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CA
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British Columbia
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Vancouver
I'm sorry to hear about your situation. I am 37 and have a 7 year old son and it is gut wrenching to think about their future.... But have hope. There is a ton of research going on right now and some very promising therapies. Your husband is young so there is a chance he will progress slowly. I have had ALS for over 4 years, and I am still here. My advise would be to get him set up with an ALS clinic right away, they are a huge help. I'm sure some of the PALS from California on here can point you to some resources too.
 

SLAUGHTER1555

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Oh
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I know how you feel as well my husband was just diagnosed May 2015 and at first it is difficult but as each day passed you adjust and start thinking about what you need to do to help him. My husband too didn't want to read anything about it didn't want to really talk about it so i did all of the reading so i could know what i was dealing with what to look for in case anything changes. He still to this day doesn't know some of the changes that have happened or happening and that's OK he has enough on his plate. Be encouraged the sting of it will wear off and you will have good days and bad days, just give him time let him adjust to it as well some times i had to allow my husband to do things or not be able to do things to see where he was. You will learn and you will get a system for you and your husband. Sad to say in such an ugly disease but there is a system to dealing with it and everybody's is different. God bless
 

GregK

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Your husband was given terrible news. He may well be in denial.

That doesn't stop you from educating yourself. Go to the General Discussion forum and read the Sticky topics (sticky topics are 'pinned' to the top of the forum so they'll always stay at the top).

The more you know the less this will take you by surprise, and the better you'll be able to cope and plan.

Have you had a 2nd opinion? From a recognized ALS competent Neuro? That is the first thing to do. ALS is very hard to diagnose and normally requires numerous blood tests, often a spinal tap, brain and spine MRIs, and most importantly an EMG. They try to prove its something else and call it ALS when nothing else is found.

You can also get in touch with the ALS Association Golden West chapter, they can offer you knowledge, assistance and support groups.

Finally, is your hubby a veteran? There is a sticky devoted to vets.
 

cheerleader

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Angel, I had the same thought as Greg! Get a second opinion for sure. If twitching is the main sign, that leads away from ALS. (It took almost 2 years for my hubby to get a diagnosis!). Although certainly possible, 36 is very young for ALS. Good luck. Donna
 

hjlindley

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Joined
Dec 1, 2011
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PALS
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10/2011
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I second the idea of another opinion. It took them three years to diagnose me. My first symptom was weakness in my dominant hand in 2008. The shock will wear off. Work with your local ALS chapter and try and stay ahead of the disease. We are all here to help you.
Hollister
 

Nuts

Extremely helpful member
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Angel, you are here for the same reason the rest of us are. Your world has just been blown apart. Coming here and sharing is theraputic, especially if your husband is in denial. You've been given some great advice, so let me just validate your feelings. This is a horrific thing to face, especially if you feel alone. You are not alone when you come here. Nothing is off the table and you will learn much that will make the journey easier to manage. Please do read, and please to come back. This forum is a lifesaver for many of us.
 

anderkling

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Joined
Dec 1, 2014
Messages
273
Reason
PALS
Diagnosis
01/2015
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B.C.
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Surrey
Dear Angel, what a blow this is. You, your husband and family are so young to be facing such a diagnosis. I understand your "lost" feeling in all of this. It will take you and your husband time to come to terms with this. It is understandable that your husband doesn't want to talk about it right now. Your head must be whirling, and your heart overwhelmed. Reach out for as much support as you can find, from loved ones and friends, from the ALS Society and from us here--write as often as you feel. Know that you are not alone. People as young as you have been on this journey. All of us on the forum are on it and have much to offer in the way of emotional support and information for each challenge, each situation. I'm so sorry. At first everything seems bleak and hopeless, but for those of us who've had ALS for some time, we know that there is life to be lived, joy and love to be shared, memories to be created, and solutions for every problem along the way. Things develop gradually, with time to manage each situation. And as they do, you will find a deeper appreciation for each other, your children, for life and its blessings. Be encouraged. Cry when you need to. You will experience a wide range of emotions. Keeping you in prayer--
Charlene
 

GregK

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Angel hasn't logged in since the first reply.

Angel, I hope you come back...
 

DreamsEnd

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It breaks my heart when young parents get this diagnosis! We're in our 70's so have lived full lives. A agree with a second opinion from an ALS clinic.
Did your husband serve in the military?

Sherry
 

Angelosangel

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Joined
Oct 1, 2015
Messages
5
Reason
CALS
Diagnosis
09/2015
Country
US
State
Califirnia
City
Coarsegold
Thank you I really appreciate that.
 

Angelosangel

New member
Joined
Oct 1, 2015
Messages
5
Reason
CALS
Diagnosis
09/2015
Country
US
State
Califirnia
City
Coarsegold
Thank you for your advice we asked his current doctor about what clinic he would recommend. We are set up in a month to go to San Francisco to the Norris and Forbes clinic. Thank you again
 

fionae

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May 30, 2015
Messages
240
Reason
PALS
Diagnosis
08/2015
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US
State
CA
City
San Diego
I am glad you came back. We are here, and we care. Please keep in touch. You're in our thoughts. Laura.
 

Angelosangel

New member
Joined
Oct 1, 2015
Messages
5
Reason
CALS
Diagnosis
09/2015
Country
US
State
Califirnia
City
Coarsegold
Thank you everyone for you thoughts and encouragement. I am new at this forum stuff so I thought I had replied individually to each one of you but if I did not I apologize. The sting is still here today and the hurt even more real. Our doctor is amazing he is our second opinion doctor and we have to drive four hours and go back every ten weeks for updates but he is the best in Northern California in our humble opinion. We have also made an appointment at the (I believe its called) Norris and Forbes clinic in San Francisco. There he will get a third opinion because one of the tests mentioned here, the spinal tap, was not performed on him. He had several tests with needles, it was awful, it his arm down to his feet on his right side of his body. The doctor only did a few on the left arm. He had three MRI's as well. The reality is just awful and I admire each and every person who has ALS and their families who support them. What strong individuals they are! Amazing people for such a horrific syndrome. I havent read the sticky notes yet but that is on the top of my list. My husbands symptoms are twitching but we went in thinking he had carpal tunnel in Feb 2015 (he managed a law firm for 9 years with excess typing) which started us on this journey. His right hand no longer works. its curled up and when he tries to uncurl it he shakes violently or cant at all. He cannot write, type, open a water bottle, change a diaper (we have a son who turns two this month), but worst of all his stress relief was playing his guitar but thats out the window too. Each day things are changing but appreciate the advice so far and validation of emotion. I cannot express my gratitude enough...
 
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