chuck-kroeger
Forum Replies Created
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I have been tried to get it to clinical trials but with by vital lung capacity at less than 50% and having been diagnosed 2 years ago I don’t qualify for any of the trials that I’ve seen. at least none in the midWest.  traveling now would also be very difficult
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I was diagnosed with ALS about 2 years ago and initially it was really tough but I was still able to walk and use my arms and breathe without a breathing assist machine except at night. as I progressed to the point that I can longer walk and I can no longer use my arms . barely use my hands and am on breathing machine full time, I doubt if I go 10 minutes without thinking about my situation and the difficulties that my wife has as my full time care giver. I am ready for the Lord to take me home before I progress further. Winter weather and covid have certainly not helped the situation
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I have been excluded from trials because my vital lung capacity is less than 60%. I missed one trial that we thought might work here in the mid West because of a few percentage points.  Very frustrating
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Voice activated devices such as voice activated recliner that I sleep in at night are great when the Wi-Fi is working. what a mess and a real pain when the Wi-Fi is down.  I’ve slept in my wheelchair 3 nights because of Wi-Fi issues.  hopefully we have those issues resolved.  Voice a activated lights in the kitchen are a great help too since I can no longer reached the light switch.
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Ketamine, PrimeC, NU9, nurown… So many things come out that sound promising that turn out to be less than effective. Its hard to get excited when you read about the newest wonder drug. Can only hope and pray that one of them will actually work the way the initial experiments say it can
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I would have taken better care of my fingers and toes through stretching and exercise to hopefully keep them from curly into practically useless appendages
I would have started using my power wheelchair sooner to conserve energy
I would have started selling off fishing gear and other items that I will no longer use that are now left up to family to get rid of
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If I get the vaccine and survive possible side effects, my life will still be about the same. because the vaccine is not a 100% sure thing, many friends still will not come around for fear of bringing me a virus.  Hate to be pessimistic but life keeps getting tougher.  at least I could go to the stores or sit out on the back deck when the weather gets better
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I totally understand Cindy’s point of view as I’ve pretty much lost ability to walk or use arms and my diaphragm is about gone. Been on trilogy for over year. you can’t scratch that itch or rub that tickle. And you just watch people around you that have to set aside their lives to take care of you.  it’s tough..  Want to be optimistic and hope that a cure is found that will reverse what has happened to my body, But it’s hard to hold out hope. I’m just ready for Jesus to take me home
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<p style=”text-align: left;”>The Gleason Foundation has helped me – they are amazing. But as I continue to grow weaker and am less able to do things for myself, I am hesitant to keep asking for more from them.</p>
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I will start by saying that the thing that’s frustrating about the forum for me is that everyone seems to be so different. I’ve known people that have had ALS that lasted 6 months and read posts from others who have had ALS ten years and still able to walk, use their arms, do halfway normal things. it is been 2 years since I started having symptoms.  I am on a trilogy 24 hours A-day, in a wheelchair and move from the wheelchair to a recliner where I sleep at night, back to wheelchair the next day with very little use of my arms. I am unable to Push the buttons on the TV remote,  reach for anything or feed by self. But I will continue to read the forum and hope to get some encouragement and maybe be able at times to give a bit of encouragement
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My doctor suggested getting the vaccine indicating potential side effects would be less harmful to me than getting the covid.
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<p style=”text-align: center;”>I was diagnosed with ALS in may 2019 with onset of symptoms about 2 years ago. I’ve be in a power wheelchair for about a year although I could walk about 20 steps up until maybe 6 weeks ago.  I was told to conserve my energy rather than exercise. I had always been physically active and fit and was put on a rigid physical program prior to diagnosis. it caused my strength to spiral down. I read where people do exercises and stretches but those are not options for me. I’ve been on a trilogy for a year and a 1/2 pretty much full time and my hands are very weak with curled fingers that won’t straighten.I can’t hold a spoon or fork. I cannot raise my arms. I do raise my legs a little to keep some flexibility there but that’s pretty much it. It appears the disease varies tremendously between patients.</p>
<p style=”text-align: center;”>Depression. yes. Tears. Yes. But mostly frustration and I feel so sorry for my caregiver. My faith keeps me sane as I continue to see my physical strength leave me week by week.  I take a hand full of supplements that are antioxidants thinking they may slow things down a bit. Riluzole made me nauseous so I quit it.  just waiting to see what they come up with next. But have decided I wont bankrupt my family to try something that hasn’t been proven.</p> -
By vital lung capacity of less than 60% has kept me out of any clinical trials that I wanted to get into.. im certainly interested in participating if I could find would that would accept me
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<p style=”text-align: center;”>Up until the time I went and checked on AF o’s I was able to get from my wheelchair to the toilet by myself but the Afo testing and trial took so much out of me that now I need assistance. I decided not to go with the Afo because I don’t walk enough to justify the cost or the effort to put it on and take it off</p>
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We had to have our modified shower e m try rebuilt so that the shower chair could roll into it. they left too many Little rises that had to be removed and replaced. now working to replace door hinges so the doors will open wider
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We took out our shower that had sliding glass doors and installed a Built-in shower with a low lip so that my shower chair can roll in to it. We are real pleased with it so far although with the big shower chair provided by the Gleason foundation, it is a little bit tight
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Another view on exercise. I was diagnosed 14 months ago with symptoms showing up 2 years ago. – my doctor and all of the staff that I see during clinic told me to conserve energy rather than exercise. I do some stretches with my legs and back which are about the only muscles I have left.  Arms and hands are very weak and so I avoid using them anymore than I have to. Before I was diagnosed with ALS I was put on rigid physical therapy routine which resulted in considerable loss of strength. ALS is so very different for individuals it is difficult to know what is best and what to expect next
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After have a difficulties with it in the past I’ve decided to give it a second chance after reading the article where it could extend a person’s life from 6 to 19 months. that’s a lot better than 3 months for sure.  I’ll also try it at the end of meals rather than on empty stomach
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I took riluzole for a few days. had headaches upset stomach and malaise.. decided it wasn’t worth it for me so I quit. it was tough working it into a schedule of not eating before it after
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<p style=”text-align: center;”>I don’t presently have problems with my feet. still have good motion and can walk a little bit. however by hands and arms are extremely weak and my figures are starting to curl. They are swollen and it is very painful to straight them.. are there any others experiencing this? do you have recommendations? I’ve tried heat and cold that help for a little bit but I wake up each morning with them curled again.</p>
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Some churchs have groups that build ramps and they love to do it. They built two for me, one with a $250 grant and then I paid for the other one. Worth making some call .
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We have no problem telling people that I have ALS. I’m in a wheelchair with trilogy nose piece and curled fingers so you can see the curiosity in many people’s faces. I feel like the more we tell, the better the awareness. Most family members were told in person that I have it but we also used social media.
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<li style=”text-align: left;”>I’ve always been one to jump in and lend a hand – a God-given gift of serving. Receiving and even asking for help is really tough. We depend heavily upon our daughter, son and son-in-law. But they have families who need them too. Friends from church have pitched in and others have too. Some tell us to let them know what we need, but its just hard to call and impose.
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a huge help to me is a rubber mat that my plate and bowls are placed on – I use both hands to manage the fork or spoon and this allows me to eat without chasing my plate.
Quantum chair and trilogy are essentials.
lightweight laptop has been huge difference maker.
bent spoon is big help
reacher grabber tool