@sutherland1953
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Charles Sutherland & Doris Sutherland (caregiver) replied to the topic ALS Community Spotlight: "Living with ALS has brought many changes, but we ‘keep on keepin’ on’” in the forum ALS Awareness Month 2 weeks, 5 days ago
My husband still goes to the shed with his brothers. He was always the one tat kept the lawn movers ready to go. His brother had not yet retired. So, when mowing the lawn day came, he and his two brothers just got busy. His brothers re now learning what he did, his skills, and how much he did. He is unable to do the manual labor part but his k…[Read more]
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Charles Sutherland & Doris Sutherland (caregiver) replied to the topic What aspect of ALS has surprised you the most? in the forum Living With ALS 1 month, 2 weeks ago
I just asked my husband this question. He said it was the speech. My husband has always been the family spokesman. Today, it’s just the opposite. It hurts my heart to see him struggle to get his words out. We have voiced banked for the future. But we know it will not be the same. But we’re thankful for technological advances.
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Charles Sutherland & Doris Sutherland (caregiver) replied to the topic First Symptoms in the forum Living With ALS 2 months ago
My husband’s first symptoms were in early 2000. He developed weakness in his left leg. Doctors, at that time, thought it was his spine (spinal stenosis) that eventually resulted in three surgeries, that did not help. He was finally diagnosed in September 2022, after ruling out of Parkinson, MS, Myasthenia Gravis, etc. The speech problem, alon…[Read more]
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Charles Sutherland & Doris Sutherland (caregiver) replied to the topic What kind of power lift chairs are recommended by ALS people like me in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 months, 2 weeks ago
My husband recently got thePermobil with the seat elevator. It’s the bomb. He has regained some of the independence he’d lost. He’s back in the cabinets and to the mailbox to retrieve our mail. So happy he has this chair. With ALS, independence, no matter how small, is so important.
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Charles Sutherland & Doris Sutherland (caregiver) replied to the topic The love of my life ( Kenneth E Steadham) in the forum In Loving Memory 3 months, 4 weeks ago
So sorry about your loss. ALS is a terrible disease. I totally agree. The devices are so very important to aid in a better quality of life. I’m the caretaker for my husband. I have learned how to operate his trilogy machine. He uses it every night. I watch him breathing. This machine gives me a kind peace, and him a better nights rest. There are o…[Read more]
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Charles Sutherland & Doris Sutherland (caregiver) replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 5 months ago
My husband has been on Relyvrio since diagnosis in September 2022. There have been no side effects thus far. We’re trying to get Radicava approval from our insurance. It’s been appeal after appeal. Some of these Medicare advantage plans are horrible. His neurologist want him in this medication but insurance will not budge. But we will not give up…[Read more]
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Charles Sutherland & Doris Sutherland (caregiver) replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 5 months ago
My husband has been on Relyvrio since diagnosis in September 2022. There have been no side effects thus far. We’re trying to get Radicava approval from our insurance. It’s been appeal after appeal. Some of these Medicare advantage plans are horrible. His neurologist want him in this medication but insurance will not budge. But we will not give up…[Read more]
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Charles Sutherland & Doris Sutherland (caregiver) posted an update 5 months, 2 weeks ago
Radicava ORS. We’re having so many problems getting the our Medicare advantage plan to approve it. Our doctor (neurologist) has done the Prior Authorization and submitted medical documentation, and two appeals that have been denied. He has ALS. I don’t understand. Can anyone share their experiences and positive outcome. It’s been heartbreaking.
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Charles Sutherland & Doris Sutherland (caregiver) replied to the topic When did you first hear those dreadful three letters…A….L….S ? in the forum ALS Awareness and Advocacy 6 months ago
Well, my husband didn’t want to reply. My husband first had symptoms in 1998. The doctors diagnosed him with spinal stenosis, pinched nerve, compression of spinal cord – cervical lamenectomy. This lead to three unnecessary surgeries. Fast forward to retirement in 2008, new location and new doctors – as weakness, balance and muscle loss pro…[Read more]
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Charles Sutherland & Doris Sutherland (caregiver) replied to the topic How do you describe ALS to friends and family? in the forum Living With ALS 6 months, 1 week ago
We just tell them I have an incurables disease call ALS. It causes muscle weakness. My brain and spinal cord signals are not in are not working as they should. There’s only treatment to slow the progress. And If you want to know more about ALS – just Google it. People will look at you so pitifully.
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Charles Sutherland & Doris Sutherland (caregiver) posted an update 6 months, 1 week ago
Radicava ORS denied for the second time due to not meeting Medicare criteria – FVC not greater than or equal to 80. I reached out to my doctor this morning. Are there any suggestions?
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Charles Sutherland & Doris Sutherland (caregiver) became a registered member 7 months, 1 week ago
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Hello Charles and Doris,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an e…[Read more]
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Hello Charles & Doris,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by…[Read more]
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