Cheryl Teribury
Forum Replies Created
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It was June, so no holiday. We took a 2,000 mile road trip in my wheel chair van. We were two days from heading home and the ramp started malfunctioning. It wouldn’t open. That day and the next the ramp played Russian Roulette. Sometimes it opened, sometimes it wouldn’t and sometimes it opened halfway. With a lot of patience, we managed to make it to several destinations. When we were ready to head home it took several tries to get the ramp open. We said a prayer before we drove off. The good Lord was watching over us because the ramp worked perfectly all the way home. We were so thankful each time it worked. Once we were home, we allowed ourselves to laugh about it. We were just glad that I wasn’t stuck inside when it wouldn’t open.
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The biggest adjustment I have had to make is taking care of myself. I am no longer able to do anything for myself.
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I participate in several Zoom support groups. One is hosted by the ALS Association and two are hosted by Inheritance of Hope. I have made several close friends and we stay in touch outside the meetings. We are free to discuss anything in our meetings. I would be lost without them.
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I was able to take a road trip from my home in FL to MD to attend my niece’s wedding. My friend and her husband drove me in my van. They are both nurses and knew exactly how to care for me. I am dependent on others for almost all my care. I am in my power chair 24 / 7. We navigated family restrooms at rest areas with no problem. The ALS Association in MD delivered a roll-in shower chair to our hotel and picked it up after we left. What a wonderful summer getaway. My nurse friends are such blessings to me.
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In early 2017 I was experiencing weakness in my right hand. After testing, hand dr said it was carpal tunnel. I had the surgery, but nothing changed. I was then referred to a Neurologist. Several months later I saw the Neurologist. He examined me and said he suspected ALS. I had no idea what those three letters meant. He gave me a brief summary and I was floored! He wanted to perform an EMG test to confirm his suspicion. The test was scheduled for the next week. I left his office and went to work and immediately researched ALS. I was horrified and cried all day. And the next 3 days. After doing the EMG, the dr confirmed it is ALS. My world just became a whole lot smaller. 12/14/17 is forever etched in my brain.
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I get my teeth cleaned every six months.
I cannot endure another mammogram. Not just because it’s painful, but also because I cannot stand that long and I cannot hold my head up. I’m going to inquire about an ultrasound mammogram. I believe it is an acceptable alternative.
I see my primary care provider for any suspicious skin blemishes. If he refers me to a Dermatologist, then I will go.
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I’ve been thinking about this alot and just couldn’t come up with a “label” that works for me. I really do feel that Katie got it right. Striver….That’s me. (Katie, I hope you don’t mind if I copy.) I’m relieved to have this settled.
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I’d never heard of this insurance until 10-15 years ago. I didn’t buy it, but I sure wish I had. I was diagnosed with ALS almost five years ago. I ‘m getting close to needing more one on one care and a place to get it. Hindsight …
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I participate in a Zoom ALS Support Group Meeting for PALS three times a month. Living with ALS can be very lonely. I find comfort in the friendships that I have developed out of these meetings. The knowledge that is gained from sharing our experiences is very helpful.
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Wow! The pictures are gorgeous! I am so sorry for your loss.
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Hi Shannon,
I am a PAL. Diagnosed 12/14/17. I consider myself blessed because I have had slow progression compared to some others. I know every case is different. From what I’ve read, the majority of PALS do pass away peacefully. As a PAL, that’s a comfort to me.
My grown son is my part-time caregiver. I’ve noticed over the years of him watching what this disease is doing to me, that he has pulled away. He only comes in my room for as long as it takes to do what needs done. I miss him staying for a while to chat or watch tv with me. He isn’t up for joining a support group. I feel he needs some kind of support.
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Hi Amanda,
Have you started these virtual meetings? I would like to participate.
Cheryl
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I have been taking Riluzole and Radicava since my diagnosis. I am confined to my power chair. I have a little use of my arms and hands and I can stand with assistance. I have a feeding tube. I can drink thickened liquids. My speech is garbled, but still intelligeable. I am blessed.
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December 14, 2023 marks six years since I was diagnosed. Like you said, I know I had ALS long before I was diagnosed. I do like knowing that I have surpassed the prediction of 2-5 years to live with ALS. I don’t plan to celebrate, but I am happy.
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Hi Dagmar,
I watched Nyad last week. Diana is a very determined lady. She is quite an inspiration.
Best regards,
Cheryl
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Hi Lou,
Where can I get one of those? The one I ‘m using is attached to my head rest. I am so restricted.
Thanks,
Cheryl Teribury
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I agree with Brian. He covered it all.
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Thank you, Bruce. That is a very informative video. At some point every ALS patient should watch it. The families, too.
Regards,
Cheryl
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I’ve been taking IV Radicava for four years, almost since my diagnosis. My progression has been relatively slow. I credit Radicava for that. As I understand it, Radicava will not make your condition improve. It will slow the progression, hence, allowing you to live a little longer.
BTW….I started the new oral formula earlier this month. It is so much more convenient.