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SKhan

New member
Joined
Oct 2, 2008
Messages
8
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Loved one DX
Diagnosis
09/2008
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CA
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Ontario
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Ajax
Hello,

I feel like I am in the worst nightmare of my life ever since I was informed yesterday by my father that my mother has been diagnosed with ALS, which was communicated to him by the Specialist two days earlier. The initial symptoms were noticed in June when she lost control of her legs and fell face flat on the driveway, which required numerous stitches. We thought that this may have been due to a surgery she had a month before to repair her bladder and those were just some side-effects from it.

Since then, she has been losing her balance in the left leg and her left hand's fingers are starting to deform and she is starting to feel a lot of pain in her lower back and leg.

My father has told her that she has a nerve damaging disease but has not communicated the horrible consequences of this disease nor the name of this disease. He has told her that she will be on medication which will help slow down the damage this disease has caused so far. He assured her that people with this disease live a fair quality of lifestyle 15 to 20 years down the road... quoting a statistic which is only true for 10% who are diagnosed with this disease.

My wife and I went over today and we were talking to her and she was insuring to us that she will eventually be OK and will start receiving treatment soon and should be all cured in a few years. My heart just sank because she is unaware of the carnage this disease can leave behind and how quickly it can weaken her. We just celebrated her 50th birthday and she has been working fulltime until this event occured in June.

The dilemma is, my father does not have the courage to tell her what she is going through, because he knows it will devestate her. I had to break this horrific news to my siblings today, who were equally devastated, but had to make them promise they wouldn't tell Mom based on my Dad's instructions. This woman has been an iron horse all of her life, a wonderful mother who bent over backwards to provide for all of us. My wife and I are pregnant and she is due at the end of November. My mom is looking forward to spending a lot of time with her grandchild and is looking forward to an early retirement.

Since my father will not reveal much to her about this monstrous disease, I feel that I should put on a brave face and let her know what she has been diagnosed with. I feel that if a family member tells her rather than the doctors who will be working with her, it may help lessen the pain.

We have all been putting up a brave face in front of her since yesterday, and telling her that she will be alright, when I clearly know she may not be. Please provide some insight and tell me what to do because I am extremely confused.

Thanks for your help.

Regards,

Sohail
 

lostinlouisville

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Sohail

I am not a Dr. nor do I have ALS. I do want to say I am very sorry about your mom and will keep her in my thoughts and prayers.

I can not believe with all the privacy acts out there the Dr. told your Dad without your Mom. It sounds like to me she is fully conscience and thinking clearly. When I go to new Dr's. they give me a paper to fill out that asked, who may they give my test results to, my answer is always, nobody. I do not want my kids to carry that burden for me if something was wrong. There is something about being the last to know, maybe that is just the kind of person I am, I have been called a control freak.lol.

But seriously, It sounds to me like your Mom has been a great mom and very in tuned with you kids. believe me there is no brave face that can mask when one of your children is bothered with something. Its only a matter of time before mom knows you have something on your mind and heart. I don't know if this helps but I want you to know you know her best and I believe you will do the right thing. Best of luck and if you ever need a ear we are all here for you.
 

Sammantha

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If she is happy with the explanation that your father has given then i would go with his advice.... but if she is questioning it and starting to have anxiety or feel like she is going crazy because she knows something else is horribly wrong, then i would suggest letting her doctor know and maybe informing her. Woman have intuition and they know when something is terribley wrong, maybe she is in that denial stage that allows us to function and be happy. There is nothing wrong with that except for when it comes crashing down with reality. When it does be there for her, and i wish you the best... Sammantha
 

Al

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Joined
May 25, 2004
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7,960
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PALS
Diagnosis
10/2003
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CA
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On
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NW of Toronto
I'm for telling her the whole truth. If you keep it from her until she can't do some of the things she might want to do if she knew she had a life threatening illness she might not forgive you. When I was diagnosed my GP told me to do a list of things I want to do before I die. I did a list and have done most but keep adding new things. She should have that opportunity.

AL.
 

BethU

Extremely helpful member
Joined
May 11, 2008
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2,644
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PALS
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05/2008
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US
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California
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Sohail ... one of the worst memories of my life is when a beloved aunt was dying of colon cancer, and we all had to pretend that we didn't know. I am sure that SHE knew ... it didn't take much guessing, she had these terrible symptoms, and they tried to do surgery but the cancer was too extensive at that point .... so she had to pretend that she didn't know that we knew but were pretending not to.

It was ghastly, and so unfair to her!

Someone who is dying needs comfort, communication and support. How I wish my family could have given my aunt the emotional support she needed, and given her the opportunity to communicate her fears and distress. As it was, she was alone in emotional isolation ... no one to talk to about what was happening to her body, no one to comfort her, everyone pretending she was going to get better ... and making her pretend, too, on top of everything she was going through.

As Al said, she also needs to know so that she can take care of issues that are important to her.

It will be very hard on you and your dad and siblings ... but I think it's important to put your mother's needs first, and I think being honest with her and "walking with her" through this is the kindest gift you can give her.

Take care,
BethU
 

brendapals

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PALS
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06/2008
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US
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any
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any
Sohail,

think back on your statement about your mom always being an ironhorse.....
She sounds like a very strong woman and Al is right about maybe better to know and make a few plans than not know?
No one will be able to give you the right answer, we know you and your family will make the right decision, just please know that you have come to the right place for support, friendship, guidance.
My prayers are with you,
Keep the faith,
brenda
 

givenin

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109
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PALS
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CA
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b.c.
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salmon arm
I am for telling her or should I say your father and the doctor together. It is possible you father is not dealing with this and more so by not telling her. Spouses go through grieving steps to and sheilding a loved one from such news is one as I saw with my father with my mothers cancer. I on the other hand was full speed ahead lets deal with this get ready and fight the fight bring it on and I will knock it down and kick it and kick it... I was the spouse.
I believe what Al said, she has lots to think about and do while she can and not telling her now when she is where she is at is not fair.
Does you father really understand what will happen down the road. I am truly sorry you all have to go through this.

Best wishes for you all
 

brooksea

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Question:

"We just celebrated her 50th birthday"

She ain't no old lady! So what is to prevent her from finding out via the internet what her symptoms point to? I can't believe an "ironhorse" would be so naive.

BetU is probably spot on...your Mom knows, but is pretending not to, etc, etc...

I am so very sorry that your Mom has been diagnosed with ALS! I wish you the strength and courage to broach a conversation about this with her tactfully. She may reveal to you more than you think she knows.

And AL is right! Why rob her of the things she could have done if she had only known!

PS

It sounds as if your father is a very loving husband to try to protect her from this news. But think of the things they could do together while she still can...
 
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SKhan

New member
Joined
Oct 2, 2008
Messages
8
Reason
Loved one DX
Diagnosis
09/2008
Country
CA
State
Ontario
City
Ajax
Thank you all for sharing your wisdom

Friends,

I would like to thank you all for sharing your thoughts on this matter and your warm support. Honestly, sharing this burden makes me feel like I am surrounded by a family that truly cares.

I have decided to talk to her about it with the team of ALS physicians who will be looking after her in about a week. Unfotunately, my father is starting to exhuberate classic signs of severe depression and has isolated himself from others. My cousin, who is a family doctor recommended that I get him to a psychiatrist ASAP and once he is a bit stable, talk to my mom about the extent of her disease. As of today, she has been informed by my Dad that she has motor neuron disease, but she is unaware of the fact that it is fatal.

Knowing my mother, the news will probably put her in shock and severe depression. On the other hand, knowing the fact that she is extremely strong willed, she will rebound from it in a week or two and would fight to live on as long as fate has decided for her. However, seeing my Mom go through depression while my Dad is still severely depressed, I know it will completely crush him.

They are celebrating their 30th Anniversary next week and he loves her to death like any other spouse would. I can only imagine if something like this was to happen to my wife... I would probably try to protect her to the best of ability... probably even try to swap places with her.

I am glad I found this forum and would definitely be staying in touch. It is unfortunate this disease is so rare and unforgiving. I, myself am guilty of knowing nothing about ALS until 3 days ago. However, thanks to sites like these, I feel much more knowledgeable and at ease. As I stated earlier, you are all like my family and together, we can all make a difference and defeat this disease in our lifetime.

God Bless,

Sohail
 

CindyM

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Hi sohail- Welcome to the forum. I am glad you decided to tell your mother. I, too, was surprised that the doctor did not talk to her himself. But if she is thinking clearly and understands what is going on around her she deserves to know the truth. Be sure to let us know how this develops. We are here for you! Cindy
 

Icanmanz

Senior member
Joined
Jul 14, 2007
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947
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PALS
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Uni
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Texas
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Tomball
Hi sohail. I am so sorry to hear about your dear mom. God, I wish I knew what to tell you. May God be with you folks every step of the way. He is Great, He will guide you. I read some of the replies, which are helpful. I agree with Grampal. I cannot believe this doc broke the sad news to your Dad without your Mom. Then again, I believe some docs have their own little way of taking care of business. Dear.......we all know how dreadful this disease is and what it does to you, it robs you of everything. What is going to happen to your dear Mom when she no longer functions? We all know there is no cure for this disease, and things will get bad day by day. Your Mom will be asking what is happening to her. You said she is still working, what if she hears from some of her co-workers how bad this killer disease is. Maybe you and the rest of the family should get together and talk about it. Bless her heart, she really needs to know, because if and when she finds out the truth, it will be a big blow to her, and she is going to feel betrayed. The terrible emotions that a Pals endures during this God-awful illness is bad enough, why stuff more in the bag? Talk to your clergy if nothing else.......wait--I'll rephrase that------Talk to God first for guidance and then go to your clergy. God will assist you...He is the Way! May God bless you folks, and best of luck to you guys. Please keep us posted.

Irma
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Hi Sohail, I think you have made the right decision, your mother is only 50 and she could have another good life ahead of her depending on her progression. When the doctors told me and my mom together what she had, I had never heard of motor neuron disease, so I just took in what they said and looked it up later! My mom however just replied with " you can die from that", that shocked me, she knew all about it as her brother in law had it many years ago. At first her response was if I get 10years out of it ill be happy.

Its almost a year now and her progression was really fast, she isnt very well at the moment and relies on others for everything, she now knows that shes dying, even when i tell her its a long way off, she just says I know you dont want to believe it, but I can see whats happening to me, I am dying now. What im saying is it may be worse if your mom doesnt know whats happening to her, and why her body is changing so much, that must be really scary. Also after the docs gave my mom the diagnosed, she said I dont want to know anymore, and she has stuck to this since. The doctors call me aside with test results etc, and she continues to say, Dont tell me what the docs say. This is her way of getting through it and thats fine.
Take care of yourself as well as your parents!
 

emjoi

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Jul 19, 2006
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Vic
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I'll just throw in that "Strength" when confronted with news like this has nothing to do with physical strength or whether you are a man or woman or anything like that.
There's a fair chance that she will surprise you with her reaction.

Sooner or later the bad news will have to come out. Sooner or later it's going to be sad. Not telling her is merely delaying it, and she will be hurt at being lied to.
If she knows then everyone can move along. "This is what it is, and now we can organise our lives to deal with it. "
 
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