New to ALS. Now What?

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TruLove

New member
Joined
Jun 10, 2013
Messages
3
Reason
Loved one DX
Diagnosis
06/2013
Country
US
State
OR
City
Corvallis
One week ago at this time I was happy. Wednesday, we got the devastating news that my dear husband has ALS. Since then, all I want to do is cry. My sweetheart is stoic. He is 70, so we knew that our time was limited, but did not know just how limited. But what I read about the disease scares me so; I can only read a little at a time, it makes me cry so much. Right now, other than his voice and some slowing down, which we attributed to age, my hubby seems healthy. What I wonder if some could share with me--what steps should we be taking now, while he still has his strength and most of his speaking ability? We are working on our wills and have a DPA in place. No children, only nieces and nephews and dear friends. But the future seems overwhelming. Is there anything we can do now to make it any easier?
 
Devastating news indeed. But, please know there is life after diagnosis. You've come to the right place!

First - take a deep breath. You need not do everything and know everything at the speed of light.

You've got paperwork out of the way. If your husband is a veteran, he may be eligible for additional and immediate assistance. (I'm in Canada, but I'm certain someone else will chime in) Next, I would schedule a visit to the ALS clinic and meet " your team". These kind people will help you along in all aspects. Then I would contact and register with your nearest ALS society office. This wonderful organization can lend you the equipment you may need, offer a support group which is a great place to get tips and additional information. For example, you can learn if your current home is sufficient to your needs, what computer software is a applicable and can lend assistance to enhance communication in the future. Please keep in mind, every person's progression is unique. Every person's choices are their own. If you are so inclined, a visit to your spiritual advisor or pastor is time well spent. Lastly, enjoy each other and the world around you today.

You are right to take in the information in small bites. It is a scary illness. It's a hard road, but you two are not alone. There are no stupid questions, so don't be shy.
 
like you i was diagnosed at 73 and now 77. first please reconized three cardinal rules 1. strong belief system 2. hope 3. positive mental attitude strong belif system can have two branches, religous and there are some small things proven you can do to extend life expectancy. hope, never give up on that as research is going on all over the world moving closer to solving this mystery. positive mental attitude is the most important rule, love, laugh, build memories. please avoid depression mustering all your forces. depression will speed progression uinfortunely i have witnessed it. harvest this site for information, ask questions, and just for social friendship
 
Thank you Elaine, I really appreciate some concrete steps to take, I feel so helpless. Our doctor here has supposedly referred us to an ALS clinic about two hours away. We are waiting for an appointment. I was not aware of the ALS society--I looked online and found a ALS association web site that looks helpful. Support groups are about an hour drive away; I may or may not feel up to that, we shall see. But it's good to know the support is there.
 
Thank you pearshoot, I am really trying hard to focus on my spiritual side. My husband's faith is strong, it really is helping him cope right now. We both really look forward to God's wonderful new world, Rev. 21:3,4 which promises no more pain, sorrow or tears. I am just wishing it was here right now. Going through personal trials tests both one's patience and one's faith. But prayer IS an immense help. And it helps to know others are praying as well.
 
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