Old 02-19-2018, 11:09 PM #1 (permalink)
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Default Newly diagnosed, need advice

My husband was diagnosed with ALS Jan 2018, onset symptoms started Feb 2017. He first had cramping in right calf muscle then foot drop. His right leg started wasting away shortly after and he lost 40-50lbs within months. He began to have trouble breathing in Aug 2017 just 7 months after onset symptoms. At first he used the bipap machine only at night but now he's using it almost all day. He also uses a cough assist machine as needed. My husband can still talk and eat alone, thankfully. But he does need a lot of assistance with his basic needs. He has been using a walker for months but his knees buckle and he has fallen quite a bit. We're waiting on a wheelchair. I believe he has limb onset but his respitory issues seem to have started earlier than others. My husband is 35 years old and we have a one year old daughter and almost 3 year old son. I'm still currently working and would like to know when caregivers typically stop working to focus on their PALS?
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Old 02-20-2018, 09:38 AM #2 (permalink)
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Default Re: Newly diagnosed, need advice

I am sorry to hear about your husband's diagnosis. I don't know the answer to your question, because we are not there yet. My husband works from home a lot to help me out, but I am usually ok by myself at home with the adaptive tools we have in place. But where I need help is that I can't take care of my youngest child because of my weakness, so he tries to be home when the kids are not at school. I'm also in MA by the way (Grafton, near Worcester), I'm 32, and we have 3 kids ages 5, 7, and 9. I could PM you my email address if you'd like to chat more or get together sometime.
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Old 02-20-2018, 09:41 AM #3 (permalink)
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Default Re: Newly diagnosed, need advice

I also highly recommend getting in touch with CCALS (Compassionate Care ALS). They are so wonderful and will pay for equipment, ramps etc. https://ccals.org/
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Old 02-20-2018, 09:53 AM #4 (permalink)
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Default Re: Newly diagnosed, need advice

Welcome. Sorry you had to find us but glad you are here.

I don’t think there is a typical answer to the working question. So much depends on support systems, financial resources and the PALS progression. People will share their stories but everyone is unique

CCALS is a great resource as Kristina says. You should get information from your clinic too. I go to MGH and Kristina goes to UMass. We are fortunate to have a choice living where we do
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Old 02-20-2018, 10:19 AM #5 (permalink)
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Default Re: Newly diagnosed, need advice

Thank you everyone for your replies. We'll be meeting with compassionate care at the end of this month. My husband is a patient at MGH currently and we work with the ALS Clinic there. I run a home daycare from home but watching 6 children and my husband can be challenging.
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Old 02-20-2018, 01:58 PM #6 (permalink)
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Default Re: Newly diagnosed, need advice

Hi, welcome to the forum!
You've been through a lot already before you arrived here and I'm glad you did.

It's a difficult question and really depends on many factors. Working at home certainly gives you more flexibility. You don't have to worry so much about an emergency, say.
How important is the money you earn? Could you do without?
More important: how much work is too much work? If you've enough energy and your husband can still deal with his bipap on his own it might be good to have kids running around laughing. But then your own will probably enough to fill the house with life.
Posting your question now probably is the answer already. When you're afraid that work will wear you out on top of dealing with the physical and emotional strain of seeing your husband sick, you're probably right.
I stopped working a month ago to be with my PALS, spend time together and care for him and I feel so much better now. It gives me a break, I can deal with the situation and even have some spare time left. I know ALS will take more of our energy but by bit, it'll get rough and it'll get ugly. But right now I enjoy the time we have, when we still can do stuff and even try to travel a bit.

Take care of yourself! Advise you probably detest already because noone giving it tells you how to do and organize that. Not working anymore could be just that.
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Old 02-20-2018, 02:13 PM #7 (permalink)
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Default Re: Newly diagnosed, need advice

I don't think of it as binary (work vs. stop). There are often options to work in a different way, e.g. in your case perhaps consult to other child care centers, run a referral service for parents, hire a helper and/or reduce your client load.

Very sorry that you have had to join us, but welcome.

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Old 02-20-2018, 02:59 PM #8 (permalink)
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Default Re: Newly diagnosed, need advice

Sorry about your situation but welcome. There are many kind and helpful people on this site.I called an ALS support group in our area. They came out the next day.They gave us many options for help.Your husband should qualify for disability help with social security. They may pay more since you have young children. The state will pay for some equipment you may need.So sorry your young family is living this nightmare.
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Old 02-20-2018, 09:05 PM #9 (permalink)
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Default Re: Newly diagnosed, need advice

Welcome.

Sorry that you are here. Our DX was devastating, but I've lived a wonderful life almost 68 years old and a loving wife of 24 years. We were fortunate to travel and visit 45 counties. So we had many wonderful memories!

I hope you beat the odds and hold on for many more years!
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Old 02-20-2018, 10:07 PM #10 (permalink)
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Default Re: Newly diagnosed, need advice

I'm so sorry you find yourself here but you will get good support. This forum is great and all the moderators are super.

I can't offer you any advice on the work issue but it's very important to take care of yourself and your own health so you can stay strong for your children. Let people help you. Don't be afraid to reach out to friends and family. Sometimes they just don't know how to help.
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