My Mom ALS First Diagnosis

KHM

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Mar 24, 2022
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5
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PALS
Diagnosis
09/2021
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JO
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AM
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Amman
Hello everyone, in Sep. 2021 my mom was having difficulty using her right arm, she wasn't able to left slightly heavy things and use her hand doing small daily tasks, we saw a neurologist after seeing many other doctors, the doctor asked for many tests and all were clear and nothing was wrong, then she asked for doing a EMG test and the doctor's report came out saying a possible motor neuron disease is suspected.. They told my mom that she was okay and needed physical therapy, but the neurologist called us after leaving to say that she suspected having ALS in its early stages,

I had no idea what ALS is, I read about it and that felt like a nightmare. I couldn't believe and didn't want to.. Then I had hope and told myself she might bw wrong.. But as the time passes, I was able to see my mom getting weaker everyday... And she fell with no reason 3 times, now she can barely walk by herself, she has difficulty standing up, lefting things, using her hands, and I recently noticed the split hand clear and obvious in her right hand..

We're doing thw tests again next month, I am scared and I am 100% sure that she has ALS the problem is I can't even think of how to the neurologist is going to tell her about a disease she has never heard of or known it's there and tell her that it's fatal..

I am hopeless, scared, and feel lonely because no one knows except me and my sister.. I read a lot about it, tried supplements, curcumin, magnisium, physical therapy every single day, it is happening rapidly and I have no idea how to manage or help.

I am lost and need some help understand what to do or say... I am afraid it has something to do with the COVID19 vaccine, she was 100% in good health before that and 3 months after she got vaccinated, this started to happen. I hope they find a cure for ALS.. I really hope this will happen before it's too late
 
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Nikki J

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There is no evidence of ALS being caused by vaccines. Over 11 billion covid vaccines have been given. The clinics would have noted an uptick.

how old is your mother? She must surely know there is something very wrong if her symptoms are as you report. Are you sure she doesn’t know what ALS is? Does she have access to the internet? What does she say about her symptoms? Is she protecting you? Anyway as a competent adult she needs truth from her doctors. It is a horrible diagnosis but not knowing what is causing her body to betray her would be worse. Love and support from her family will help
 

lgelb

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I'm sorry to hear about your mom. First, there is no relationship between any Covid vaccine and ALS. We don't know all the reasons that people get cancer, and we don't know all the reasons in ALS. But if it were related to the vaccine, a lot more people would start having it, and that didn't happen.

If you aren't sure how the neurologist will tell your mom, be there when he does, and you can help fill in the blanks and reassure her that even though it is serious and there isn't a cure, that you will be with her always. You can also let her know that many scientists are working hard to find ways to slow down progression. But she deserves to know, for sure.

And if she is falling, she needs a walker or a wheelchair before she has a bad fall and gets much worse. You would not want that to happen just because you don't want to see her unhappy. She would be more unhappy if she broke a bone or had internal bleeding. She can get something to help keep her steady even before the confirmation of the diagnosis. We will support you however we can, if she truly has ALS.

Best,
Laurie
 

Bleue

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Joined
Feb 16, 2022
Messages
8
Reason
CALS
Diagnosis
04/2021
Country
US
State
VA
City
Alexandria
I’m so sorry. I don’t ever wish these early stages of diagnosis on anyone-it’s hell. But if it’s ALS, it won’t be ignored. Progression will happen whether you are ready for it or not. All i can say is read as much as you can, support her emotionally once the Dr confirms diagnosis, know that the she may never accept it and just be in denial (as a coping mechanism) and angry. Get a walker and a shower chair for your mom, and just try and enjoy life every single day. Even the mundane. Because time and the disease progress before you know it. Taking carenof her will be the best gift you’ve ever given to her or yourself. Even when you think you can’t do it, you can. Stay strong…
 

KHM

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Joined
Mar 24, 2022
Messages
5
Reason
PALS
Diagnosis
09/2021
Country
JO
State
AM
City
Amman
Thank you for your support. Sadly, it's getting worse everyday. We now have a walker and I brought some other sport equipments to get her body a little bit stronger. I make sure that she walks everyday and do her exercises and eat well. The problem is I might not be the right person to tell her.. We are redoing the EMG and the tests in 10 days. I still have hope that she has any other form of MND but not ALS.. Even though all the signs are pointing to ALS.. I will be there for her always and will make sure that she stays at her best for as long as we can.. But the thing is I still can't believe it's happening it breaks my heart to see her weak and sad. I will do every effort to help her and help myself coping with it.

To bw honest, I wasn't sure what ALS was in the beginning, but now I read a lot.. I searched for exercies we can do at home on a daily basis.. Now I walk with her everyday for about 5 minutes, we do the exercises, and I brought a walker and some equipments to keep her legs and arms moving.. I just don't feel like I am the right person to let her know about it.. We are seeing her neurologist in 10 days from now.. I will be there for her always but it's just hard to believe.. I will do every possible thing to help her, it's just that I don't feel strong enough to do it.
 

Mary2

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May 1, 2021
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CALS
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04/2021
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GA
KHM I am sorry about your Mom. You did the right thing getting the walker and from your writings it sounds like she may shortly need a wheel chair. Of course you find this diagnosis hard to believe, that is a normal first reaction. This is a good forum. I have found a lot of strength by posting and reading this forum. I know you will do everything possible to help your Mom and will be there to support her.
 

wishmobbing

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Sorry to hear about your mom, too. With a rapid progression i wouldn't place too much hope in a cure. Focusing on quality of life is key. So basically what feels good is good. Other than with cancer you don't have to stress about chemo and it's ugly side effects.
It's good you care for her and help her get the right equipment. Also you reading about how to deal with certain aspects of this disease is great. I always felt that knowledge is like armour. If you expect some difficulties and early on know that this or that might help, the problem won't hit as hard emotionally.

Just one thing about exercise: range of motion exercises are good to keep her flexible. But exercises should never go beyond exhaustion. If I understood correctly muscles go quicker when under a lot of strain. So if you do that five minute walk, come back and after about half an hour of rest your mom feels like she could do it again, that's great. That's light enough exercise. If she's still exhausted after some rest of is even sore the next day, it was too much.
Her limit will likely change with progression. At some point passive range of motion exercises (her limbs being moved by a physical therapist) will help prevent pain and joints getting locked and immobile.

To most of us here it's a very foreign concept to tell the kids about the diagnosis but not the (old) patients itself. (In Germany it's basically illegal because it's breaking doctor-patient confidentiality.) I heard a similar story by a dear Greek member here. The intentions of keeping the dire truth hidden from an elderly patient are good. But I think it adds much stress to the already grieving kids if they can't be open about this and instead try to put up an optimistic facade. It's probably not necessary. She can very likely sense you are going through a rough patch and maybe she even pretends like she doesn't know she's seriously ill for your sake.
It really helped me to be able to talk to my PALS about him eventually not being there. About what was really important for him and his quality of life. And I think it was good for him too, to tell me what he was afraid of or just to guess what would happen. But the most important thing was to spend time together, knowing that we didn't have forever.

Come here whenever you don't feel strong, need company, advice or a place to vent. Weirdly I seldom felt strong while being strong. You do and will do incredibles stuff. It will be hard, you might get some scars. It's a rough ride for all involved. No one can do this alone, it's good you and your sister are there with your mom and you can at least talk with your sister about this.
 

KHM

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Joined
Mar 24, 2022
Messages
5
Reason
PALS
Diagnosis
09/2021
Country
JO
State
AM
City
Amman
Thank you, I appreciate your support and help. I am very worried about how the neurologist will tell her, but I believe she knows better what to share about the disease with my mom.. Yesterday she told me "next year my hand will be better and I will help you with the house chores" .. It really broke my heart, I don't want her to have false hope, but I am waiting for her appointment.. Looks like her ALS is brogressing fast, today she barely could get out of bed by herself, or go from sitting to standing when she's on the couch. I am afraid 10 days are too much before we see the doctor.
 
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