Old 10-22-2015, 09:14 AM #1 (permalink)
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Default How do you go on?

My husband was diagnosed just 3 short weeks ago. He began walking funny about 6-7 months ago, experiencing weakness in his legs and arms. Falling and having difficulty getting up. He finally went to our doctor who sent him to a neurologist who did EMG's and an MRI. This doc found a herniated disc pressing against the spinal cord and sent him to a surgeon. Post surgery he didn't make any improvement, in fact his hands and arms got worse. Back to the neurologist, a new EMG found denervation in his arms so we were referred to an ALS specialist at Emory in Atlanta. After a full day there we went home with the dreaded diagnosis. Since then we are making adjustments, getting quotes for home renovations, stairlift so vs vertical lifts. It is all so overwhelming. They tell us to keep doing what we used to, but that is so difficult. And he just keeps getting weaker. I swear he is worse today than just 3 short weeks ago. I feel so alone. So sorry for the depressing post but I need to say this to someone, somewhere.
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Old 10-22-2015, 10:03 AM #2 (permalink)
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Default re: How do you go on?

Hi Adconley, I don't have much to offer, as this is fairly new to us as well But, I am here to listen and talk if you want. Just know I understand what you are going through. Trying to go on each day, but ALS is always on my mind. Knowing it will not get better, just worse. It is sad. Still trying to learn how to deal all this. -Michelle
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Old 10-22-2015, 10:15 AM #3 (permalink)
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Default re: How do you go on?

Is your spouse a vet? If so see the va sticky. How do you go on? You take it one day at a time and sometimes hour by hour. You are at the emotional rollercoaster stage. Things will start to settle emotionally and you will be able to think more clearly. Mda and alsa can help. The clinic at emory will have a social worker you can use to help you find services etc. Hang in there.
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Old 10-22-2015, 10:17 AM #4 (permalink)
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Default re: How do you go on?

Adconley, Sorry to welcome you here. I can't offer any advice from a CALS perspective. However, I can attest that there are many, many wonderful CALS on this forum who have an abundance of advice to offer and are amazingly generous with their advice. Never apology for writing about how you feel. You are not alone here. Cee
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Old 10-22-2015, 10:22 AM #5 (permalink)
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Default re: How do you go on?

ADCONLEY,

Welcome. Sad that you must join us. But be assured you're at the right place for support, answers, and just a good place to vent.

You'll will be surprised to find strength you didn't know you had. You'll get through this, day by day, just like we do.

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Old 10-22-2015, 12:28 PM #6 (permalink)
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Default re: How do you go on?

Adconley, welcome. This is a horrendous diagnosis, and I've found that only acceptance makes me able to LIVE this journey with my husband, rather than feeling like I'm on a death march. It takes awhile, and none of us reach it at the same time. We also relapse sometimes, and stop to grieve, but then we just live. Our defination of life changes continually. My husband is a slow progressor, and feel like I'm pregnant. We change and adjust gradually, and the waddling prepares us for the next step. It's a rather strange analogy, but as nine months of increasing size and reduced mobility prepare one for the loss of self that comes with parenting (life is about your children, not you), each loss here brings you closer to the next. Concentrate on what you HAVE at each stage, not on what you've lost. I can not think about the future we've lost or the past that was so wonderful. I can't live doing that, so I stay in today, with the exception of prepareing what we need to care for him in the future.

When we laugh and smile, it's a good day. If he has the energy for an outing, we enjoy it as long as he can, and then I accept that he may well spend the next day in bed. Everything I do to make him more comfortable is an act of love, and everytime he thanks me I am fullfilled. It just is.

I wish I had somthing better for you. We all understand where you are, and you are welcome to ask and vent--this is the safest plact I know!

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Old 10-22-2015, 02:35 PM #7 (permalink)
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Default re: How do you go on?

Thank you all for your kind advice. It's a relief just to hear from people who actually know how it feels. I think I have already determined that from here on we live one day at a time.
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Old 10-22-2015, 02:53 PM #8 (permalink)
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A warm welcome to you, we will help you work out how to go on a day at a time.
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Old 10-22-2015, 03:46 PM #9 (permalink)
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Default re: How do you go on?

Welcome. We are good at hand holding here and supporting each other. You mentioned chair/ stair lift. That may not be a wise investment if he is progressing quickly. You may want to consider moving the bedroom downstairs instead for safety. Some of those experienced with two story homes may have better advice. Hugs. Donna
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Old 10-22-2015, 03:47 PM #10 (permalink)
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Default re: How do you go on?

Becky says it well. I'll add that while we are living in the day, remembering the joys, trips, people, unexpected pleasures of the past can help recall a life well-lived and what will live on, as well as jump-starting conversations in the present.

This may not be for everyone, but we positioned my husband so he could see the screensaver of our photos. Mementos, favorite movies, music and revisiting collections are likewise fertile connections.

"Do what you can, with what you have, where you are." - Theodore Roosevelt

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Old 10-22-2015, 09:23 PM #11 (permalink)
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Default Re: How do you go on?

Welcome...Your story sounds just like mine. There are good days and bad only they seem more magnified now. For us today was not a good day, we spent nearly all day at the VA and don't feel like we're getting anywhere. Tomorrow will be a better day. Just remember on the horrible days, a good day is not far away. Take the time to cry when you need to, it seems to help me. I'm so sorry you're having to go through this with us but we are here for you. Hugs! Michelle in Texas
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Old 10-22-2015, 09:48 PM #12 (permalink)
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Default Re: How do you go on?

So sorry to welcome you here but when you are on this forum you are in the company of people who have the same feelings and fears you do. anything you say or ask will be answered and you can feel safe and not judged. I understand this horrible disease takes over your life and that we CALS have to find strength. I do not have more than a few moments a day when my husband and this disease are on my mind.

Although it is important to prepare please do not let it overtake the time you have together. I have been down that road and it takes to much out of both of you. Enjoy some moments together and reach outside of your mind to enjoy ach other. That is so much easier said than done in the early stages of diagnosis. We are less than 3 months in and it is still so overwhelming at times but we are both doing better at excepting that ALS is part of both our life's. Like Michelle said, let yourself cry and find a little time alone to let it all out.

Live each day by not counting each day and hugs to you from Texas!
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Old 10-24-2015, 10:29 AM #13 (permalink)
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I have been on this site quite a bit looking for answers to various issues and have always found help. I have never posted anything but when I read your post I remembered so vividly the day we found out my husband had ALS and the myriad of emotions we felt. He was diagnosed in Jan. '09 so he is nearly at the 7 year mark. He was told at the beginning he could expect to live about 2-5 years so we feel blessed to have had this time. Now I see him getting worse faster and the ALS clinic has recommended getting signed up for hospice. I know that he can have hospice for a long time - even years but somehow the word makes it feel like the end is near. It has made me realize even more that I need to be able to share with others who understand the myriad of emotions that I am again feeling and I commend you for getting involved here right away. Anyway I wanted this to be an encouraging post that you and your husband could have a lot longer together then what you think but it has turned into a pity party for me so I will end on this note - through the difficult times in the last 7 years, we have been blessed many times over with the time together, with encouragement, prayers and help from family and friends and even the availability of so much help from the ALS association and the ALS clinic we go to where we have found wonderful people and so many things to make our lives easier and more normal. God bless you as you begin this journey together.
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Old 10-24-2015, 12:55 PM #14 (permalink)
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Default Re: How do you go on?

Welcome, Linda! Feel free to start your own thread any time.

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