Husband was just diagnosed...I'm so worried and not sure how to help.

cbiedron

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My husband was diagnosed on Monday and getting a second opinion next week. All his symptoms point to bulbar onset (slurred speech, difficulty swallowing, coughing all the time). Sometimes he will cough for a long time and I'm afraid he cannot breathe or will choke on food. I'm terrified. Is there anything that he should be eating, avoiding, or doing? I haven't been able to get in touch with his doctor because of the virus offices are closed. Any advice would be so greatly appreciated. Thank you.
 

lgelb

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I'm very sorry to hear about your husband. This thread [and you can find more using the Search link up top] talks about foods that may be less troublesome, but there is also some trial and error as the affected muscles differ. Drinking something the consistency of a shake just before/during eating or basically approximating that consistency, somewhat thicker, in all food may also help. Temperatures of food and drink can make a difference as well.

But it sounds like he will want to consider a feeding tube, suction machine and BiPAP in conjunction with the confirmation of the diagnosis, presuming that's what happens, so I would try get things underway in the clinic visit next week.

Meanwhile, making sure all the house filters are clean, minimizing cooking odors, dust, considering a room humidifier, opening windows if/when that helps, and raising his head in bed may help as well.

Best,
Laurie
 

ARCG

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I am so sorry to hear about your husband and the inability to get in contact with the doctor because of the virus. If you are able to do a virtual visit, ask your neurologist about Nuedexta, it helped my pals with speech and swallowing, for a while, but not sure it helps everyone.
 

KarenNWendyn

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I’m sorry to hear about your husband. The trick is to maintain weight and avoid choking. The coughing suggests he might be aspirating, and that could predispose him to pneumonia.

I found blended foods best. If that still doesn’t work, then a feeding tube becomes helpful. It’s good to have this on your radar and get used to the idea. It can initially be used for hydration and medications, and he can still eat by mouth. I have a tube and it really is a blessing.
 

nona

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I am sorry that you have to go through this. In addition to the thoughts above, could he be experiencing any reflux? I have bulbar onset and for the past few months have been dealing with a persistent dry cough that turned out to be from refluxreflux.
 

Jaycat

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Yes, so sorry to hear. I have Bulbar as well.
a) try to get a Subscription for Nuedextra , I believe it has helped me
b) I still choke on small particles, chips , cereal, carrots , be careful when eating , have water around
c) slow down , your normal reflexes want chew a bit and swallow, chew a lot ,smaller portions then swallow
d) foucus on eating , not talking, if you can talk , I cannot but still keep trying to jump in, my bad
e) don’t panic when trying to breath , if u can breath a little, it will solve itself , water , or a very small piece of bread with lots of butter, it usually just sweeps it away
f) get a water pick now, keep your mouth clean as food will get lodged in gums

good luck , also do not read the internet
 

cbiedron

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Thank you so much everyone....Jesse, yes his original diagnosis was reflux, until he got the emg. He stopped taking the reflux meds when it seemed like they were not working. Should he go back on them?
This is all so helpful and I cannot thank you enough.
 

nona

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I'm not a doctor, but the reflux meds have helped me tremendously. That said, my ALS is advanced and I eat through my feeding tube, so we are at different stages of the disease.
 

KimT

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A Vitamix is a great way to blend real food while waiting for a feeding tube. You can put anything in there your family would eat plus make tasty shakes to add calories. I drink a shake every morning that has 1,000 calories and tastes like a chocolate milkshake but it's full of nutrients and gives me energy.

I also suffer from reflux and take meds for that, too.
 

Firefighter58

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I don't know if you have had a child or not but relax, learn to take care of your husband is about the same as a new baby and I mean that in a good way. You will learn many things from the folks hear on the form and you will teach yourself many tricks just like my wife did. Just take your time.
About the feeding tube, I have one but over the years I have taught myself to be able to eat again but much slower than I did before, it takes me about an hour to eat a burger and fries and have a drink, but so be it. The tube is now used exclusively for foul tasting meds and vitamins twice a day. All in all life is not bad, different but not bad, As you and your husband go along, don't be afraid to ask the folks here for help, they are great and they have a lot of knowledge regarding ALS, I know from experience.
Al
 

cbiedron

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Thank you Al, I appreciate this :)
 

Rose Bud

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My husband was also told he had reflux.... silent gerd. The medicine did not help at all and he discontinued it once diagnosed with ALS. His experience only and he discussed it with his dr first.
 

Dee Dee 0617

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I'm so sorry, husband can be such wonderful people. Keeping his weight stable is very important. I found dairy has been reeking havoc with my saliva. I now substitute dinner with non-dairy muscle milk. carbs in the morning and protein with vegetables at mid-day. I was scheduled for a feeding tube, but covid came so I wait. Little thing my doc told me to do, and it helped a lot. When he's ready to swallow turn to the right and chin down. This will manually close your airway decreasing the likelihood of aspiration.
 

Sonshine

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So sorry to hear about your husband’s diagnosis. Hopefully, you have been able to meet with your health team and have local support and answers. My husband has bulbar onset and at the time of diagnosis (Jan 2020) the choking, speech difficulty and respiratory problems left us both feeling helpless and fearful. For him, medication he was taking for blood pressure, cholesterol and ?stroke actually were making the symptoms worse. Because the medication was contraindicated with ALS, his ALS specialist discontinued them and he improved. His stroke had been misdiagnosed 7 months earlier and he didn’t need the meds anyway. perhaps you could be so lucky too.

Other’s have shared great information. If he falls asleep in a recliner, position his head chin forward (avoid his head back with neck extended). When he has a choking episode have him sit-up and put his Head forward and chin down. These two simple positions made a big difference. If he is yawning while driving, have him chew gum...it works to somehow stop and/or slow down the yawning (closing eyes during yawn and not able to open Back up quickly).

More tips to consider when navigating food and fluid. We
use big sturdy straws. I keep them everywhere! And never leave home without them. He can’t drink without one. No straw, no drinking. Food has to be tender and moist but not Too thin. For example, soups are thick not clear. fruit can’t be too juicy. We’ve found that he can’t handle the solid and liquid foods together. Watermelon at room temperature isn’t possible but slightly frozen is manageable. Very tender meats cut in small pieces ok, fish is wonderful, eggs are perfect, Pastas are great, breads are a challenge, no salad/raw veggies, We are still learning one bite at a time some days, taking it slow. Most importantly, we have learned to be grateful to see all we have. Hang in there. You aren’t alone.
 
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