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Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

Posted by allegro @allegro, Apr 27, 2019

WE ARE DEALING WITH MY HUSBANDS ALS AND IT S DEVASTATING...I AM FIGHTING DEPRESSION AND PANIC ATTACKS,,,CAN ANYONE OFFER SOME HOPE????? JAN

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janisstonier | @janisstonier | 5 days ago
In reply to @caregiverx2 "@quimbie, @amybish The doctors at Mayo Clinic in Jacksonville, Florida, helped us through the ALS ordeal...." + (show)
@caregiverx2

@quimbie, @amybish
The doctors at Mayo Clinic in Jacksonville, Florida, helped us through the ALS ordeal. They also do genetic testing. There is a type of ALS that runs in families. My sister's genetic test showed positive for this gene. We had an uncle that had ALS as well, although we didn't find out until after his death. There are a few approved drugs to treat ALS but they only extend life by a few months. There is no cure. But, Mayo Clinic has an ALS team of doctors, social workers, pulmonologists, physical therapists and other professionals that will help you navigate through the stages of this horrible disease. They were a great resource and also knew what we needed before we needed it. As the caregiver, I think I benefited more from the ALS Clinic than my sister did. Other hospitals are doing this approach as well. I hope you find one in your area. I would have been really lost and clueless as to what I needed for her care as she progressed. I wish you well through this journey. Make the most of every little moment. ALS takes away all of the person's physical abilities, but it does not take away the mind. That is the hardest and also the best part. My sister couldn't do things anymore, but we found ways around her limitations. We still managed to laugh. She passed in January, and I miss her every day.

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I’m sorry for your loss. I am caretaking for my husband with ALS. His started in the hands to shoulder and respiratory failure so he is on a non invasive ventilator at home. I read where someone wrote ALS stands for a life stolen and that’s for sure. Was hoping to connect with others going through this ordeal.

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gnathans251 | @gnathans251 | 1 day ago

My husband was diagnosed August 2022. It was hard and I cry daily but not in front of him unless we cry together. He couldn’t find anything to give him happiness or hope. We have been focusing on our faith. He was only losing his voice before we made the decision to try different medications, which significantly enhanced his condition. He received the ALS/MND treatment for his ALS approximately four months ago; since then, he has stopped using a feeding tube, speech is getting better by the day, sleeps well, works out frequently. I’m surprised a lot of CALs, and their PALS haven’t heard of it, google uine healthcentre . c o. m. My husband has become very active

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gnathans251 | @gnathans251 | 1 day ago

I am here because of my dad. He was diagnosed in July and has declined so much in just the last few months. It was so hard to watch. I took a leave of absence from my teaching job to help my mom care for him. Best decision I’ve made.Last year Our Family primary physician introduced us to Uine Health Centre ALS/MND treatment. Since starting the treatment, he has stopped using a feeding tube, sleeps well, works out frequently, and has become very active. Google uinehealth centre . co m I’ve enjoyed being in this group thus far.

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