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My Mother Was Diagnosed With Als Today...

SuZQZ

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SuZQZ Newbie

SuZQZ

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After loosing 95% function in her right hand and 85% in her left over the past 6 months, other medical obstacles, two neurologists, two physiatrists, an internal medicine doctor and a physical therapist, 5 EMGs, 4 CTs of the neck, 2 spinal taps, a myelogram, many blood tests and other x-rays, today we were told that my mother has ALS. The disease is also known as Lou Gehrig's disease.

"ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed."

To say this news is devastating is a major understatement. I feel so hollow inside. I'm used to being able to "fix" things. I can't fix this. No one can. She is an extremely bright individual. She is an independent spirit who is always helping others. She is a mobile type individual who loves to travel, hop in her car for a road trip, whatever, and that freedom has been stripped away from her. Her body will continue to betray her until she is trapped within it. This has always been her worst fear. Not death, but to deteriorate and linger and not have a good quality of life.

I haven't cried yet. I've had to remain strong for my mother, and for my father, brother and my daughter. I will cry later when no one can hear or see me. I will get it out of my system so if the hospital releases my mom tomorrow I can be a rock for her as she has always been for me.

Please keep her in your prayers &/or send positive thoughts her way. Please.

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damagedangel Newbie

damagedangel

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There are never the right words to say in these types of situations. However I will join in with the rest of the group and say that I am so sorry that your mom was diagnosed with this. I will send positive vibes to you and her. Just remember that you have a large extended family here that is here to support you through it. :grouphug

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Burrich1 Enthusiast

Burrich1

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I am so sorry SuZQZ. I watched my ex-mother in law quickly decline from this disease, and it was not easy. She had the version of it where her speech went before her motor skills, which signifies their will be a rapidly advancing decline. (Unlike Stephen Hawking, who lost his motor skills before his speech, but has been able to fight off the disease for 25+ years)

Check out http://www.alsofmi.org/ at some point in the future. They are great at helping out and are an excellent resource. Their in the same building as MS is in Southfield. I've done a lot of ALS walks over the years, and have made a lot of donations of both equipment and money to them. I've also read that recently they have made some new breakthroughs in gene isolation and protein interactions for ALS, which will hopefully provide a new and better treatment.

Best of luck to you, your mom, and your whole family. Let me know if you need anything. *hug*

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Rev.Reverence Newbie

Rev.Reverence

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I pray for your family. May they act in solidarity to overcome their obstacles in this grave hour.

The illness of a familial matron is indeed upsetting.

I urge you to walk away for a moment; and cry now (I like closets for this); the release will give you more power...

Acceptance can be a really hard thing to come by, it is often the largest obstacle in a time such as this.

So be strong, and you can PM me if you wish, I love to help people.

--BIG HUG--

-ALL MY BLESSINGS-

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Destroit Collaborator

Destroit

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Holy SHIT, deary I am so sorry. Here's some hugs with some loves: :grouphug

I really don't know what to say...when I pray I'll put your mommy them :grouphug. I couldn't even begin to fathom what you're going through.

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SuZQZ Newbie

SuZQZ

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Thank you all so much for your kindness, your words, thoughts and prayers. Knowing my DGN family is here for me helps so much.

She came home from the hospital today. They let her come home because there are so many of us to help her and take care of her on the things she can't do for herself. She will call tomorrow to arrange physical therapy with a group that specifically deals with neurological cases. She is going to get a second opinion, but with all of the tests they ran and re-ran, we do not expect a different diagnosis. We all know what this means, her life expectancy now and the physical decline ahead. Fortunately, we have always been a tight family. For now, we are keeping close, laughing at what we can, and just appreciating being together.

Thank you for the website link, Burrich. I will be checking that out tomorrow.

Marc, thank you again for our conversation earlier today. Knowing you are there means so very much to me. And thank you for understanding why I had to cancel hanging out, once again.

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