Charles Sutherland & Doris Sutherland (caregiver)
Forum Replies Created
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I just asked Charles what is the most challenging ALS symptom right now. He said it’s his speech and I agree with him. All of a sudden his ability to speak plummeted. It’s been very difficult for him to communicate at times. He has the Tobii Dynovax. It’s getting to the point where he may have no choice but to use it.
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I’m the wife and caretaker. We got our diagnosis last year in September. It was a year on September 13, 2023. We have undergone renovations to our home. We now have a converted van. And recently. COVID came to visit me and husband. As a caretaker, it has been devastating. And I do try to do it all. But, I’m getting to the point where I need help. I think that I must make it look easy to family members, but it’s not easy. I find that I have to ask for help. Volunteers are not very frequent. I have reached out to different agencies to get help with speech technology and help with house cleaning which gives me a break and more time to find ways to work smarter in planning how I can better care for my husband. I try not to plan to far in the future. I tend to become mentally overwhelmed when I try to anticipate what might happen next. I have learned to take a day at a time while making sure I keep my husband encouraged and in good spirits. ALS is extremely hard on caretakers. I recently saw a couple during one of our visits to the neurologist, the caretaker, I assumed was the wife, looked so tired and drained. Her husband, I assume, was much more advanced in his disease than my husband. I still think about her. As a caretaker of a pALS, I’m a witness to the how difficult the job is to care for the love of your life.
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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 knowledge is invaluable. It breaks my heart that he is not able to do the lawn. He loved manicuring his lawn. But, he, in his wheelchair, still spend time in the shed with his brothers giving instructions and training classes. I love that he keeps going after every hurdle and there are many.
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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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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, along with other symptoms, finally confirmed ALS. A very long journey to a diagnosis.
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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 progressed. Finally, in 2021-22, new neurologist felt this may be ALS. And this is the first time we heard the word ALS. Confirmed diagnosis on September 14, 2022. We will never forget this date and the impact.
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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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My husband fell today. This is the first time I actually witnessed a real bad fall. He was diagnosed on 9/14/22, after many years of no diagnosis and continued decrease in his mobility (muscle weakness). He got out of the car and grabbed his walker with one hand. I heard the fall. He said it flipped. I have never been so scared for him as I was today. We are learning everyday what we can do or should not do. He is okay. A power wheelchair is our next step. Just sharing. Thanks for listening.
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1. Be patient
2. Don’t be in a hurry
3. Enjoy every day
4. Know your limitations
5. Getting comfortable with, and use to saying I cannot do a lot of things
I asked my husband these questions. He was diagnosed in September 2022. He’s still able to talk but his voice is worsening. His walking is very very limited.This year he mastered the mobile wheelchair and has almost mastered driving the wheelchair into the van.
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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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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 other devices that I will learn how to operate as time go on. And I will keep your words about how important it is to ensure our loves ones are cared for. You have my prayers.
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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 the fight to get a drug that may slow the progression of this unforgiving disease.
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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 the fight to get a drug that may slow the progression of this unforgiving disease.