pkadams

Last Update on My Mom and Questions About ALS

Update: My sweet mom walked out of this world and into the next on January 20, 2025 after a courageous battle with ALS. I know that she was greeted by my dad and many family and friends with open arms ! . In the past two weeks she declined suddenly and quickly, until she was no longer able to communicate.

My beloved , amazing mother, age 83, was diagnosed with ALS last June after she began having trouble swallowing and speaking. My mom was always strong and healthy and never even used her sick days at work until this terrible disease hit.

Mom last year, still able to use stairs at that time. Now she can’t so we put in a ramp.

Thanks to the ramp she was able to leave her house and come to Thanksgiving at our house. She wasn’t very comfortable being pushed in the wheelchair though. I get it . She asked to be taken home after only an hour. I’m glad she came over but it was very sad since can’t eat anything or talk. But she was very happy that she finally got to see my daughter Grace. It’s been a long time.

Mom has Bulbar onset type ALS and as of now she can no longer speak and has trouble swallowing her own saliva. She communicates by using an app on her IPad or by pointing and hand motions. You don’t realize how important speaking is until you can’t do it! She has a feeding tube now. Her breathing is only mildly affected at this point. However she does have a cpap machine which she hates and refuses to use. I think she misses drinking her coffee more than anything. She used to drink it all day.

It’s so hard to watch her lose her strength. Even though she’s in her 80s, she wasn’t “old” until now. She was still traveling and working at 81!

https://www.als.net/news/science-sunday-limb-and-bulbar-onset-als/

As for her other muscles , she’s weak but she can still use her arms and hands, unlike people with limb onset ALS. But she moves very slowly and small motor movements are difficult. Getting up from the toilet or sitting is very difficult. We recently purchased a bedside commode which is easier for her night time use.

If she falls, which has happened a lot, she can’t pull herself up off the floor. She also struggles to get out of bed but for now a bed handrail is helping.

She’s probably less than a month away from needing a wheelchair to get around because her muscles in her legs are just too weak. But she’s fighting to maintain her mobility as long as possible! She can’t wear shoes because her feet are swollen for some reason.

The prognosis for ALS is always bad, but each person progresses at their own rate. Some people die within months or a year after a diagnosis. Others live for years with medical interventions such as feeding tubes and breathing assistance. ALS can strike young people, too.

It can be financially devastating and stressful as well. Most insurance plans, including Medicare, do not pay for someone to come take care of you, so you either pay out of pocket or your family does it. As she requires more care and supervision it is getting more difficult for my sister, who lives with her, to work . So I am juggling taking care of my own daughter and my mom. Paid help would be very helpful, but it’s expensive. My mom has no funds for it.

Side note: do your research if you’re thinking about Long Term Care insurance. I’m reading mixed reviews on whether it actually pays for what you need , not to mention it is very expensive.

Mom ❤️

So I joined a very helpful Facebook group for caregivers of people with ALS and it has been pointed out that there are many people who have diagnosed recently, since Covid. I suspected instantly that my mom’s ALS was related to her multiple Covid vaccines. Other people suspect that as well. Of course I can’t prove it , but I do know that people with autoimmune diseases are known to have had worsened or reactivated symptoms after getting the vaccine or having one of the early Covid variants. And we know that Covid attacks the body in many different ways. So whether you blame the virus or the vaccine, I think there is a connection for some people.

ALS can also be genetic, running in families, which is scary and so cruel. Covid is known to have a genetic component so maybe the MRNA vaccines could interact with that aspect . https://alsnewstoday.com/forms-of-als/

I’m not saying I have the answers to these questions, but I think someone should be investigating because ALS is devastating for the person with it and their whole family. It really sucks to not be able to eat, talk, walk, and eventually totally dependent. If there is surge in cases we need to know why. /https://pmc.ncbi.nlm.nih.gov/articles/PMC10886908/

https://www.gq.com/story/steve-gleason-memoir-interview

Steve Gleason raises money for ALS research

Edit: As my friend Brad mentioned in the comments, having faith in God and my savior Jesus helps me get through the day. My mom is also a believer and she has told me that she’s not scared to die. Up until recently she has had a positive attitude and dealing with her ALS pretty well. She’s struggling to adjust as it gets harder to do things by herself. I don’t think she ever expected anything like this to happen to her , who does? It’s a tough adjustment. But I trust that she is turning to God for comfort in her dark moments.

For me, I’ve been reading and listening to podcasts about people who have experienced pain and loss and how their faith grew and changed during their journey. I’m not in pain but my life is not easy so I find it helpful to hear other people’s faith stories. No one welcomes these hard times but we have a choice whether we respond by turning to God or away from Him.

Update 12/18. Mom is getting hospice services now. They brought in a hospital bed because she is having trouble sleeping lying flat. Her type of ALS causes difficulty swallowing and that includes spit. So when she lies down, she chokes on her spit. We had a nice visit yesterday. I told her I loved her and I will miss her when she’s gone but I will know where she is, with my dad and Jesus. This is finally hitting me that soon she will not be here.

34 comments

  1. Thanks for sharing what’s going on with your mom. Before I was a pastor I worked in rehab and acute care as an occupational therapist and over the years worked with a number of people with ALS, including the bulbar variation. The Bible teaches that while we may be in the dark on many things, the Lord knows all of our days before even one of them came to be. I think that for the believer there can be great comfort in that truth. And there is great peace in knowing that the believer will be with the Lord eternally, that the end of Psalm 23, ‘surely goodness and mercy shall follow me all of my days, and I shall dwell in the house of the Lord forever’ contains a promise that will see its great fulfillment after drawing the last breath on earth.

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    • Indeed. My mom is a believer, but it’s still hard losing your independence. I just bought a book called Suffering, by Paul David Tripp . He is a preacher who was struck by a painful and unexpected kidney disease that greatly impacted his life . I’m only two chapters in , but it’s great so far . I could relate to how he had been super fit and healthy and then suddenly he wasn’t. Losing my ability to run was quite a hit to my identity. Losing her job was a big hit for my mom’s identity. We don’t always realize how what we “do” can be more important to us than we think.

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      • How true, Paula. I have lost my ability to speak for an extended time, other times have been unable to walk without pain, unable to smell or taste. I’m grateful for those experiences that taught me to appreciate every day of life and the things I can do.

      • I’ve read a few of Tripp’s books, including Suffering. He is a very sound, biblically-grounded teacher, in my opinion. His book, Instruments in the Redeemer’s Hands, is outstanding.

  2. How sad and difficult this must be for your mother, you, and the rest of your family. Amazing, though, that she worked into her 80s. I’m glad your mother’s faith is helping her deal with this.

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  4. Paula, I share your suspicions about the vaxx. I’ve seen so many people suffering serious medical problems after getting the Jab. One dear friend has died, and a 12-year-old my granddaughter knew died of a brain aneurism. When I hear bad news about someone who was the picture of health who suddenly is fighting for his/her life, and I immediately think of those *?!# shots. But I haven’t brought up the subject, what would be the point now? :/

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  5. Amen to our choice! And adding your Mom to my prayer list that Father will prepare her heart for what is to come.
    My Dad died from ALS complications but was relatively healthy until his last three weeks on earth.
    ❤️&🙏, c.a.

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  7. You really got your hands full! I’m praying for strength and comfort, peace of mind and good rest. Sometimes caregivers are so busy taking care of everyone else, they forget themselves. May God grant you strength and peace to walk through it.

    As for the Covid vaxx, I really believe we need to be seriously investigating. There is ample evidence that it has caused damage to many people’s health. It’s a complicated issue because of course there are other factors that negatively impact our health too, environment, genetics, toxins.

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  8. My mother had dementia. I spent a year and seven months keeping her out of a nursing home. It’s so hard, but seeing her in the nursing home her last four months was even harder. I had some help from my sister and was able to be home with my wife a couple days a week. This may sound hard, but I’ve decided I’d rather die suddenly of a heart attack than any of these brain problems. I’ve asked God when my time comes simply turn off the pump. watching them lose all strength is hard. My mother was strong like yours. My mom had been a farm girl. We were with her when she took her last breath at 89. I’m not trying to make you sad, but as I’m sure you already know, it’s a hard journey. There are good moments to remember, but it’s mostly hard. I focus on when she was strong. Now that she is gone, I focus on those good times. And I believe I will see her again in heaven. She is strong again.

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    • Thank you for sharing. I think we all hope for that quick exit . I know my mom has told me the same thing in the past when she was healthy . For many , a slow death is quite a test of faith and an opportunity to trust God more. Of course we are only human and we always choose the easiest way. I pray God will take my mom home before she becomes completely taken over by ALS weakness. Welcome to WordPress, by the way. 🙂

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  9. I am so sorry to read of your mother’s ALS. The vaccines will certainly be the cause even if other things may add to the mix of toxic substances. Vaccines contain neurotoxic substances.

    ALS is considered an Idiopathic disease according to Wikipedia. Anagramming ‘Idiopathic disease’ may seem an odd thing to do but it comes up with this for example, AI Idaho pesticides.

    As pesticides are neurotoxic such things could cause ALS too but the primary threat is such things as vaccines breaching the God given skin protection.

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  15. My deepest condolences to you and your family.
    Judging by the way you talk about her, she must have been a great mother and woman.
    Nothing in this world is truly destroyed.
    It is only transformed into another form.

    May the good Lord bless you, your family and your beloved mom.
    May He heal the pain and shine His light upon you.

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