Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease
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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I am just so curious about his. My Dad passed with ALS when he was only 56. I was a child but I remember how hard it was for my Mom and he died in his bed at home. She was his caregiver and never thought she did enough for him. I miss a great woman to this day; she has been gone for over 35 years. I have a niece that they think she has ALS. They can't find anything else to name that is wrong with her. She has been to 8 neurologists for tests and consultations. She is 68 maybe 69 now and been having symptoms for last 2 to 3 years of weakness and losing mobility. I am going to pass this on to her. Any other thing she did that might be of interest and help to my niece? I really appreciate any advice to pass on. Thank you.
I need this too , my husband was just diagnosed 3 weeks ago! We are in Columbus area of Ohio. How do we get another opinion through Mayo?
@amybish ALS is a very difficult diagnosis to get so I understand if you are anxious and devastated. The Mayo Clinic has a Care Network of hospitals, one of which may be in your area. https://mayoclinic.org/about-mayo-clinic/care-network/members
You can also try a university hospital or comprehensive medical center in Ohio.
Let me know if you are able to get an appointment
I thought it was hard, but he was referred to Dr at OSU and they seem to just say it right away. We’re in Ohio also but I just wondered if male clinic in Lake Florida or somewhere might be good place?
@amybish there are 2 hospital in Ohio in the Mayo Clinic network. They are Blanchard Valley Health System and Memorial Health System. I’m not sure what you mean by Lake Florida, but these 2 hospitals would be great to try.
Will you let me know which one you choose?
I meant Jacksonville, Fla
I heard there or Arizona location are best
Hi @amybish, Mayo Clinic has campuses in Jacksonville, Florida; Phoenix, Arizona and Rochester, Minnesota. To request an appointment, start here: http://mayocl.in/1mtmR63
Are any of these locations possible for you? How are you doing?
@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.
Thank you for the info but sadly, my niece passed away at home with her family this past Dec. It was not a peaceful passing her children told us. I was so sorry her last days were not good for her. We have to make the best of what we have to deal with even if we don't like it. I have to preach that to myself often. We are a large family so I am hopeful that my Dad and my niece are the only ones that were affected by this terrible disease. Thank you again.