ALS + a Cold = Stress x 10

Kristin Neva avatar

by Kristin Neva |

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My husband, Todd, came down with a cold last week. At this stage of his ALS progression, any cold is life-threatening. His lungs fill up with mucus, and he needs me to push on his abdomen so he can cough it out.

Todd had a sore throat and a runny nose on Saturday. We hoped it would end there and not move down into his chest. His caregiver put him into his bed that night, but then she woke me early Sunday morning because Todd felt panicked. His lungs had filled up.

I climbed on the bed, straddled him, and pressed on his abdomen repeatedly. Enough mucus came out for him to breathe well enough for me to transfer him into his wheelchair.

Once he was in his wheelchair, he was in a better position for me to clear his lungs. He slept in his chair for the rest of the morning, and his caregiver cleared his chest every couple hours.

Throughout the week, I placed my hands on his belly and pushed again and again. When the mucus wouldn’t clear, we used a cough assist machine to loosen it up. I held the mask over his mouth and nose as the machine pushed and pulled air in and out of his lungs. I could hear his lungs gurgle more with every exhale, and then we went back to the manual assist coughs for the final expulsion of mucus. The whole process takes five to 10 minutes.

On the worst day of the cold, Todd needed my help coughing every 15 to 30 minutes. He was so miserable. His nose kept running, and I kept suctioning it. His lungs felt heavy, and his abdomen was sore from me pressing on it. Colds are hard on him, and they are hard on me.

I’ve been giving him manual assist coughs for years, but it’s usually not more than a few sessions a day. My body could handle that, but this time around, my shoulders hurt from the repeated jarring.

I couldn’t keep up with the intense manual coughs, so I jury-rigged a device out of croquet mallets and a pool noodle so I could lean into his stomach using the weight of my body rather than putting stress on my shoulders. It’s not ideal — it’s not as comfortable for Todd and doesn’t expel the mucus as easily — but I have more stamina to keep going and it doesn’t hurt my shoulders too much.

“It’s a lot of work to keep me alive,” Todd said as I transferred him to the toilet after I helped him cough and suctioned his nose. It’s overwhelming to have him so dependent on me. I’ve never experienced something as physically and emotionally exhausting as when Todd gets sick. The only thing that came close was labor and childbirth, but that was limited in duration.

I’m trying to baby my right shoulder so it will heal, but how can I do so when his needs are so great? I can’t press on his abdomen as hard as he wants me to.

I mustered up help from others who are physically stronger and willing to assist Todd. I made quick runs to the grocery store while Todd’s physical therapist was here, as he’s good at giving manual assist coughs.

When Todd’s massage therapist came to give him a massage, we taught him the manual assist cough technique. He’s a big guy and was able to clear Todd’s lungs well. I ran our daughter to dance while he was here. My brother, who was visiting from out of state, learned how to help. He kept Todd’s lungs really clear for a couple days, but then had to go back to work.

We hired one of our caregivers, who is exceptionally good at the manual assist cough, to pop into our house to help clear Todd’s lungs occasionally during the day.

Our normal ALS life is stressful, but when Todd is sick, it’s stressful times 10. I’m on edge, wondering if he’ll pull through. I try to stay within earshot or keep my phone on me, but I worry his lungs will fill up before he has a chance to call me. I check on him throughout the day, hoping to find him still breathing. It is exhausting to be so hypervigilant.

Todd told me, “I’m sorry your life is so hard taking care of me. I wanted to give you a life on a lake with a boat, and your biggest worry would be if you should use SPF 30 or 50.” That brought tears to my eyes. This ALS life is hard.

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Comments

Joseph Dunne avatar

Joseph Dunne

Could you get a foot lever rigged up to a device that would push down on his stomach, local engineers could design? just a thought, best wishes

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Kristin Neva avatar

Kristin Neva

Sounds like a good invention.

BILLY W REVIS avatar

BILLY W REVIS

ALS , I HAVE IT ,IT IIS HELL TO BE ON DEATH ROW, ALL WE CAN DO IS PRAY AND HOPE THE AFTER LIFE WILL BE BETTER .I BELIEVE IN GOD AND THAT JEASUS DIED ON THE CROSS SO ALL THAT BELIEVE WOULD HAVE ETERNAL LIFE . I WILL PRAY FOR ALL OF US WITH ALS . AND ALL OTHERS TOO,.GOD BLESS AMERICA.

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Jessie Towbin avatar

Jessie Towbin

Kristin, I have watched your video on manual assists, so I can imagine that doing them so frequently would wreak havoc on your shoulders. I hope you continue to have help, and I hope Todd recovers quickly and stays well. This ALS life is indeed hard. Thank you for sharing yours.

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Kristin Neva avatar

Kristin Neva

Thanks Jessie!

Randolph Gregory Jr avatar

Randolph Gregory Jr

Has Todd considered getting a trachea ? If so , the cough assist machine can be used to get the mucus out of his body . I have been using this procedure for the last seven years . Thank God , I have been cold and flu free since . Best of luck . God bless you guys.

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Kristin Neva avatar

Kristin Neva

That's great that you have gone so long without a cold!

Vicki avatar

Vicki

My heart goes out to you for your courage and determination to help the one you love. This is an eye opening for each of us that has ALS so thank you for sharing it. Thoughts and prayers to both of you.

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David Crellin avatar

David Crellin

This brings back memories I wish I didn't have. As a teenager I nursed my mum through MND. I was in my final year at school, acting in a musical, playing in a band, doing all I could to keep busy. Then I caught 'flu & crashed. I was exhausted & my doctor told me to rest. I was at home in bed, head throbbing, throat like sandpaper, with just my mum in the house. I heard a noise downstairs. I grabbed a blanket & went downstairs. I found my mum in her wheelchair. She grabbed me & my blanket.
The last I saw her alive was as the ambulance took her down the drive. She died a few days later with pneumonia. I believe she planned it that way. She was an extremely intelligent woman & wanted to die. This was in the 1970s, no chance of assisted dying.
I'm now 63, but remember that day so clearly. And now it's me with ALS.
Not many hear this story. It still affects me. I have decided never to put such a burden on my two sons. And I still remember my mum with love.

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Anne avatar

Anne

Your love story is beautiful. And real. Your honesty and his resonates to My ALS story more than any other. You are both God’s servants and His Ministers. So are your children Thank you for your heartfelt writing. I have used your words as mine sometimes. You say it better.

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Trish Killian avatar

Trish Killian

I have ALS my left side is worse than the right
I am wheelchair bound. I also do the cough assist
I also do a treatment with albuterol. That helps also
I am the first in my family to have this . I Praise God
I know I have been saved from hell. If you don’t know Jesus all you need to do is say Jesus I know I am a sinner
Please Jesus forgive me of all my sins. I accept this gift through faith. Thank you for saving me . Amen

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