New Caregiver

Jdeanda

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Jul 30, 2021
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CALS
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07/2021
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corpus christi
Hi, this is my first post and im sure not my last. My dad was dx back in July with ALS and confirmed again on Monday. He is 71 yrs old and he has lost so much weight and his speech is rapidly getting worse. My dad has always been the caretaker and it is hitting us real hard. hes been super emotionally lately. I just wanted to hop on here and get some tips, especially since my dad is very old school and doesnt even know how to text. He still has a flip phone!
 

affected

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sorry to see you join us, and truly sorry about this diagnosis for your dad.
Losing weight really speeds up progression, maybe you can start with finding ways to increase the calories he takes in and he has probably been advised to get a feeding tube into his stomach now.
You might find this post helpful, and ask any specific questions you have too
 

rmt

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Sorry to welcome you here. But the people are so helpful and supportive on this forum so I'm glad you found us!
 

lgelb

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I too am sorry to welcome you. But we will support however we can.

Being super emotional may be "emotional lability," which happens to some PALS. You might talk to him and his doc about a drug called Nuedexta that addresses that problem and, in some people, may help speech a bit.

While working on the feeding tube, if that's what he wants, a high-speed blender can help make smooth foods out of what would normally be harder to eat. Eggs, nut butters, cream, ice cream, soft meats, mashed potatoes, canned fruits except for pineapple, etc. are all potential ingredients and that kind of a mixture can also go down a feeding tube if he gets one.

If he can type, he can text. An iPad with a cellular option, as opposed to a phone keyboard size might be easier.

Best,
Laurie
 

affected

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We also have a resource section that is worth checking, but don't feel you have to work out everything in a day. Knowing this section is there means you can address things as you feel you need to or are ready to.
 

Mary2

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Joined
May 1, 2021
Messages
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CALS
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04/2021
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GA
Sorry to welcome you here, but you have found a great forum. The people here have helped me and my PALS tremendously.
 

Lancasterlanie

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Joined
Dec 8, 2020
Messages
7
Reason
PALS
Diagnosis
11/2019
Country
US
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CA
City
LANCASTER
I too am glad you found this forum. I was also having the problem with emotions and Nudexta was helpful immediately! It is a very expensive drug though,over $1000 but,with the use of the free app Good Rx I pay $30. My peg tube helped me to rapidly regain the weight I lost. Medicare and my supplemental insurance totally covers the cost of the nutritional formula and supplies. And has made feeding a lot less stressful.
 

Jdeanda

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Jul 30, 2021
Messages
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CALS
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07/2021
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US
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TX
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corpus christi
Thank you ! yes he will need to get a PEG soon , question, can you have a Gtube and still eat normally? He can still eat a little but needs more nutrition and a better way to take his meds.
 

Nikki J

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04/2014
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Yes the tube does not affect the ability to eat. you can use the tube just for meds or meds and fluids or meds and supplemental nutrition or for everything depending on needs. If he is using a lot of energy trying to get calories he can use the tube for basic needs and “eat for fun”
 

affected

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yes it is a great thing about the g-tube - you can eat and drink as much or little as you want. Some PALS get the tube before they even need it (better to be done while you are in the best physical shape possible) and just flush water through it daily. This helps keep extra hydrated as a side benefit.
In fact the best bit is - he can eat the things that are his favourite, and use the tube for the rest!
 

JimInVA

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@Jdeanda - My wife was initially misdiagnosed as to the source disease. It was a year and half later that she found herself at Johns Hopkins to get another opinion. The doctor asked about her symptoms. One of the things I commented on was the fact that she had lost a considerable amount of weight... that the rate of loss was increasing... and that she was then losing it at a rate of about 10 pounds per month. I additionally commented on the fact that should could not lay flat as it was difficult to sleep. After we shared the whole of her current symptoms and progression, he said...

"We're going to rerun any and all tests that you might already have been given. We might even do some testing that you've not yet had. But given what you described, I believe that we'll find that you have ALS. Even before we get those test results back, I want to get you started on a BiPAP machine to help you with your breathing. One of the problems with those afflicted with ALS is that the lungs are not as good at doing what they are designed to do. Your diaphragm is no longer able to expel the accumulated CO2 that results from the breathing process. As a consequence, and especially at night when you are laying more flat, your body is working especially hard to try to push out that carbon dioxide. In essence, it is like you're running a marathon in your sleep because you are working so hard to breathe correctly. And that is likely why you are losing weight as you have."

Several days later, Darcey received her BiPAP and immediately began to use it at night. She found that she slept more peacefully, dreamed more fully and woke more rested than she had in ages. And in time, we noted that the severe weight loss had abated. Where she would often need multiple daily naps... or even fall asleep in the middle of a conversation... she now found that she was alert and energized until bedtime began to approach. It was a very marked change.

I don't know that this is your Dad's issue with weight loss, but I wanted to share our experience so you could compare. I know that it is a difficult journey to watch your Dad's decline and the feeling of helplessness that can accompany the fact that there seems to be little that you can do. Let me tell you, though... your being there and your determination to make him as comfortable as possible goes a long, long way.

[An aside... Darcey also refused to get a SmartPhone. :) Also, early on, her progression seemed rapid... so steadily declining that her neurologist alerted her to the fact that he believed she was within 6 months of life's end. That was March of 2015. She stayed with us until October of 2020. We really don't know what each tomorrow will bring... so live each day and make it as good as it can be!]

My best to you...

Jim
 
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Jdeanda

New member
Joined
Jul 30, 2021
Messages
6
Reason
CALS
Diagnosis
07/2021
Country
US
State
TX
City
corpus christi
@JimInVA - First i would like to thank you for sharing your journey with me. This support group has by far surpassed what i was needing. I know that everyone is so different, and thats the hard part because you truly don't know what the next minute brings! its been a difficult day, mom and dad are not having a good day and I know its ok to not be ok but it just breaks our hearts as their kids to watch, and i know my dad feels like he is a burden on us and feels bad that "he is putting us " through this. This truly is the worst disease! There is absolutely no hope. Its hard to be positive because I'm so angry! I try my best to live for the little moments and not let ALS consume my whole day, but my dad is our whole world and seeing him like this is killing us :( I really am hoping once he gets his bipap machine he will get some good sleep because i know he is mentally and physically exhausted. thank you so much again!
 

Jdeanda

New member
Joined
Jul 30, 2021
Messages
6
Reason
CALS
Diagnosis
07/2021
Country
US
State
TX
City
corpus christi
No he is not a veteran. Unfortunately we just found out that in the process of diagnosing my dad with ALS he had a biopsy of his pancreas and its malignant. Our hearts are completely broken.

I find my self wishing my dad was more positive in his journey. its 4 months since he started with the bulbar symptoms. He's lost a ton of weight hardly takes his meds and is so fatigued and always asleep. I understand how he feels. He feels like why do i need to even take meds? he has given up all hope and we don't know what to do.
 
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lgelb

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I'm so sorry to hear that. His doctors may wish to test for anti-Hu antibodies, to rule out a paraneoplastic syndrome.

If he wishes to continue on, it sounds like time for a feeding tube, if it is difficulty with eating that is causing the weight loss. That would be something to arrange before it is too late. The path is his choice, but you can present the facts that if he keeps on his current course, he will die if only from malnutrition and that for many is not the ideal passage. You can also discuss if he has future events or activities that may be motivating for reversing his decline. If he is very malnourished, it may be difficult for him to focus mentally.
 
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