Losing weight, sleeping a huge amount

[PaddysMom]

Hi my wife was diagnosed last month. Physically, she has one useless hand and a shuffling walk. Generalized weakness and cramps and spasms. The very first signs of a weakened voice.
But to my eye, she’s sinking very fast. Maybe it’s “just” depression. She is retreating from all of us she loves. She never has eaten more than 1000 calories a day, but now I’d be surprised if she was getting to 500. She started out very thin and “small boned” so for her losing 5 lbs is 5%. I think she’s moving towards 10 lbs now.
We have an appointment with the ALS clinic on the 25th. I had an instinct to call doctors until I got one to do a feeding tube without waiting. She didn’t want to. I think if I insist and push she’ll do it. I think I need to. Advice, opinions welcomed.

 

[Nikki J]

I am very sorry.

the weight loss is of course extremely worrying. Is she having trouble swallowing? Is she having trouble feeding herself because of her hand and / or activity intolerance?

PALS can also lose weight because of heightened metabolic needs due to the disease or breathing.

it sounds like you have identified decreased intake as an issue. What does she say about it? Is there a chance it is deliberate to speed her end? If she has interest in stopping the loss you can help with high calorie easy to eat things. Many here have had luck with smoothies.
it does sound like depression is a likely culprit though. Will she consider an antidepressant?

 

[lgelb]

Sorry to welcome you here, Mom. The question is if she doesn't want to rush into the tube because she wants a faster end game, or is just feeling rushed and still processing the diagnosis. Sleeping a lot could be depression or malnutrition/dehydration, as could withdrawal.

I would suggest to her the smoothie approach for now as, presuming that swallowing and/or energy for eating are issues, you do want to find the right radiologist and there is likely a procedure wait time. If swallowing is not an issue, you can defer the tube discussion and focus on regaining/maintaining weight through modified diet.

Just be honest about your confusion and ask the same question as I did. But you can point out that going with high-protein/fat smoothies (eggs, nut butters, frozen fruit, oat or real ice cream, etc.) for now preserves all the options, whereas continuing to lose weight does not. There is a tipping point where weight and energy are too low for the tube and other interventions to help.

Best,
Laurie

 

[PaddysMom]

Thanks for your thoughts. We had a hugely better day or two with her trying hard to eat. And trying to be part of the family. Thanks be to the FSM! I guess we’ll make the 25th. And beyond. Thanks for talking to me. For now, we both feel nothing but lucky. We have each other and she’s not shut down. I was terrified but happily reassured for now. Tomorrow’s terrors will come.

 

[Mana]

Thank you for your message. You helped me by being helped here. My husband was diagnosed January 24 by Duke Neurology and we have an appointment early June at the Duke ALS Clinic. All he has now is a right foot drop and slight limp. So far we are both coping. We have a strong and happy 55 year marriage, close, supportive family and a few close friends; have reached out and been offered lots of help, e.g. information from NC ALS, including the link to this forum which is my only contact so far with anyone else actually living with ALS.

Reading a few entries have helped ease me into our new reality, but we're only just beginning this journey and I haven't been able to imagine how writing anything here would help. Just knowing that your reaching out and getting clear, useful ideas made a difference is an encouragement to me. I do know that, as it all sinks in, and the disease progresses, we won't always be able to talk each other off the cliff. For now, we're both often able to come back to the present moment, be grateful for our specific circumstances, general good health (except for ALS, he is extremely healthy and has a sunny optimistic nature). We're focusing on the recommended list, taking care of business not already checked off and making some travel plans for Spring.
Like you, Paddysmom, we are focusing on the gift of having each other, knowing terrors will come.