Both parents have and have had ALS. I need help.

ALSParents

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My dad passed of ALS in 2011. In 2019, my mom was diagnosed with ALS. I've been a caregiver with my mom before, to my dad. Now, I am the only caregiver to my mom since my dad passed. Is this possible? Both brother and sister live in different states.

I am having a harder time dealing with my mom being diagnosed. I am angry. I am in denial.

When my dad had it, I was super patient, super supportive and would spend all my free time helping them both. With my mom, it is way different. I am angry. Both of my parents are going to leave this earth from ALS! is this even possible?? they don't share any bloodline.

How many of you have both parents that have had this disease?
 

affected

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I'm so sorry :(
I have heard of this happening once before - it is of course the rarest of rare, but sadly possible.
I bet your mum is pretty scared having been a CALS and she is now a PALS. Can you talk with her about how you feel as it may really help if you can be honest about your feelings.
You are not angry at her, you are angry - and that is perfectly normal and valid. I bet she is angry too!
 

Nikki J

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I am very sorry. It is rare but there have been other documented cases. There are a few papers written about this phenomenon which is called conjugal ALS

You have every right to be angry at the situation. AsTillie says I am sure your mom is angry and scared. I am FALS. Someone once said to me it must be easier because you know what to expect. I thought it was one of the stupidest comments ever.
 

Narrowminded

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I am so very sorry this has happened to you. Yes, extremely hard to believe. Know that we here have your back. And I also agree with Tillie, talk with your Mom about your feelings. She probably does share many of them.

Hugs as you go forward.

Nikki - I agree a really stupid comment by someone who has no clue.
 

Nuts

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I too have heard of this, and it is my worst nightmare. Nikki--I'm with you. Wow.

You have a right to be angry, both about losing both your parents to this beast, and about being caregiver to both parents afflicted with this. I absolutely can't imagine how I'd ever be able to go through it again. I know, we do because we must, but DAMN.

Tillie is spot on. Talk to your mom. She probably has feelings about you having to do this again that outweigh her feelings about being the PALS this time. Seriously. Ask her how her experiences as a caregiver affect her thoughts about dealing with ALS herself. She also needs to talk.

You already know that you will need help. I realize your siblings live in different states, but there must be some sort of support from them--even if its frequent visits so you can have a break. Oh, and they need to come learn how to give you that break. Or, are they in a position to help pay with paid caregivers? Does your mom own her home? Is it adapted? If so, you/she may be able to take money out of the house to pay for help. If not, then those siblings should be offering to take her in. -- I know, your concern is about mom and your loss, but these are very valid concerns and issues also. There are a lot of us CALS who are struggling to reclaim our lives after ALS---and now you will have to do it all over again. C R A P.

I know you've been down this road and are experienced, but please stick around here. You are going to need to do a LOT of venting.

Hug Hugs

Becky
 

KimT

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A friend from my home town, Port Henry, NY, lost both parents to ALS. The Champlain River Valley (the area I grew up in) is a cluster area which means more than the average number of people developed ALS. I personally know six people from my area who died from or are living with ALS and I lived in a very small Village.

You have every right to be mad. I'm so sorry you are going through this for a second time.
 

ALSParents

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A friend from my home town, Port Henry, NY, lost both parents to ALS. The Champlain River Valley (the area I grew up in) is a cluster area which means more than the average number of people developed ALS. I personally know six people from my area who died from or are living with ALS and I lived in a very small Village.

You have every right to be mad. I'm so sorry you are going through this for a second time.
KimT,

there are a couple of cases in my hometown too. New Milford, NJ. "do we call Erin Brokovich?" to test the water? If there are pockets of multiple cases out of the 30,000 that have it at any given time in the US, does one get the area tested for environmental issues? How can we actually 'do something' to get the environment tested and find a commonality?

As I took care of my dad, he said, "not in my lifetime, but maybe the next. No one knows about this.". I'm dedicated to do something. I can do a walk and raise money which I know helps, but how can I get this on social media? the news?

I am angry. forgive me for being so aggressive. I'm done. I'm ready to get on the news, get on social media and make people get it!
 

Nikki J

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There was what was believed to be a cluster in Middleboro MA in the 90s I think. There was a history of contaminated water from industry. The state DPH did a study but could not confirm any higher incidence of ALS or MS among residents. People who live in the area still believe it happened though they think it is mostly over. I know someone whose friend was a PALS from there who is completely convinced
 

ALSParents

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How do I get the 'clusters' to receive media attention? I need help and advice on how to get this viral. Being it is my 2nd parent and I will lose both Mom and Dad to this at an early age (67 dad, mom is currently 71) how do I get attention to parents with ALS and clusters? Who can provide some kind of direction for action. I am ready to be that person to get in faces!
 

affected

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We had a town near me that appeared to be a cluster - small population, quite a lot of ALS over a 10 year period. A lot of people were alarmed and questioning many things. There hasn't been a diagnosis there now for nearly 10 years, so it seems that in this instance at least, over time, the numbers levelled out. We will probably never know why there was a spike.

When my husband was diagnosed there were 4 PALS in the one small town (not the one in paragraph above). It seemed like a lot! He has been gone 5 years and we have not had more than 1 PALS at any time in that town since.

Suspicion of clusters happens often, but isn't always what it appears.

Many of us believe ALS is not a single disease but a group of diseases. Kind of think of it like cancer is not a single disease, there are many kinds of cancers. So just maybe something environmental influences some ALS cases, but something else influences others. There are many dedicated research teams the world over working really hard to try and solve this. Some of them look at possible clusters and environmental factors. We just don't know so much.

I have no idea how you would approach this as we don't know for sure there are true clusters.

How is your mum doing with coping with the diagnosis and where her progression is at? Do you think she might also benefit by becoming a member here so she can talk to other PALS?
 
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