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hammerone

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Joined
Feb 6, 2012
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2
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Loved one DX
Diagnosis
01/2010
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US
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WA
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Bellingham
My mother was diagnosed with ALS in Jan of 2010. Although all of her symptoms point to ALS, she refuses to accept that there is something wrong. In fact, she let me know we would not be discussing it any further and told me to go to hell the last time I mentioned it. I understand her anger, and denial, but my concern is that all the time and money spent on other cures/treatments is just making it so no one has to face what is going on and come to terms with this terrible disease. The whole family is aware of what's going on and we all can talk about it together but not with my mom. I have offered to go out there for a few weeks to help but am not sure I will be able to play the game of pretending like it's perfectly normal for her to be in a wheelchair. Any advice on helping someone after they have received their ALS diagnosis?
 

trfogey

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Joined
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PALS
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NC
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Assuming that you've related your mother's date of diagnosis accurately, one of two possibilities pops to mind. First, if there has been notable progression since diagnosis leading to substantial physical impairment that your mother refuses to acknowledge and attempt to deal with, then you may be looking at dementia caused by possible FTD (frontotemporal degeneration). If this is the case, then you may need to have her evaluated by a neuropsychiatrist. There's also a specific forum for ALS and FTD on this website and the regular posters there are an invaluable resource about dealing with the ALS and the dementia.

The second possibility -- that your mother hasn't been particularly disabled during the two years, post-diagnosis, due to very slow progression -- so she doubts the original diagnosis. If this is the case, an evaluation at her ALS clinic might be in order. The evidence that originally pointed to ALS may, when combined new information, point to a different set of possible diagnoses. It's very rare, but we have seen it happen here.

Good luck to both of you.
 

Tom's Support

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Mar 1, 2010
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CALS
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08/2000
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CA
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ON
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Leaskdale
I concur with the FTD thing. Not that a diagnosis makes a difference with treatment, but it really does help the family to cope. FTD brings lots of surprises with it and understanding helps the rest of us swallow those surprises and deal. Tom has been in denial for 11 years, and I believe that for him it has helped him get through his very tough day, every day. Bouts of frustration come with denial because abilities really are drained away, but at least he still gets up every day to try to do something.
That in itself is a true blessing.
 

brooksea

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I'm very sorry about your mom. If she is in a wheelchair and cannot accept what is happening to her body, then you may want to observe her behavior while you are there. I agree that you may be looking at FTD.

It will do no good to argue with her about ANYTHING or try to make her face the reality of the situation!

Good luck and thank you for wanting to help her. We are here for you.
 

jessielf

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Joined
Dec 26, 2011
Messages
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Lost a loved one
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08/2011
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wis rapids
I'm sorry to hear your mom has ALS too. In a way I envy you about her not wanting to talk about it. But I see your point as well. Maybe its just her way of dealing w/ it and wants to feel "normal" as much as possible. But I hope when if and when the disease starts to take its toll on her that your mom will at least accept of getting help. I have the total opposite here. I know my mom has ALS and thats all I hear pretty ALL the time. There are some days I wish it wasn't brought up about her dying and such. Over all I accept what she has and accept her as she is. I just wish that she wouldn't bring it up all the time and at times I want to distance myself from her. I really want to enjoy the time I have left w her but sometimes it seems impossible since I know she is reminded every day what she can and can't do, but I wish she was more positive. It feels like I already lost her.... I hate this disease and what it does to families. HUGS to you and your family

Jessie
 

Chase_Corin

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Joined
Nov 24, 2010
Messages
135
Reason
Loved one DX
Diagnosis
11/2010
Country
CA
State
On
City
Perth, Ontario
I know how frustrating it can be. My dad was in denial of his condition for the fist several months. He was diagnosed November of 2010. It took the family a couple months to have the information truely sink in. My dad is one of those never go see a doctor unless your arm is falling off type man.

His condition was blatantly obvious when he was finally diagnosed. He had lost all strength in his arms and his speach was becoming slured. He is still refuseing to let up look into making the house wheelchair friendly because he insists that he is not going to be in a wheel chair. He is still in denial of some things.

We did talk him into having the porchlift installed and he uses it now to get up and down the stairs.

My grandmother sounds like your mother, she had cancer and was compleetly in denial, refused to let people outside the family know that she was sick, continued to live on her own until the brain tumour put her in the hospital. (It was like early and sudden onset alzimers) To the day she doed she was a proud woman that would not allow anyone to see her weakness. I think it has to do with Pride but it was hard talking to people at her funeral who never even had an idea that she was ill.

Your mom may just need somone to talk to.... somone not connected to your family or friends
 

Katie C

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Joined
Aug 1, 2009
Messages
1,563
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Lost a loved one
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07/2009
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US
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San Jose
Since you mom is in a wheelchair it sounds like her symptoms are in fact progressing. Which leads me to agree that a cognitive evaluation is probably called for. If she does turn out to have FTD or at least some cognitive loss, you'll be able to consider medications, "slipping" meds in (ok, lying... sometimes ya do what ya gotta do) to help keep the disagreements to a minimum. I assume your mom has a primary caretaker that accompanies her to doctors visits, etc. That would be the person to e-mail or phone the doctor prior to her next visit and express your concerns. It could go a ways towards making her care easier down the road. Good luck to all of you.
 

kmendsley

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Joined
Feb 19, 2010
Messages
434
Reason
PALS
Diagnosis
04/2011
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US
State
CA
City
Highland
This is hard and I am sorry you are having to go through it. I don't know if my input helps any, because my story is reversed. I am the one diagnosed...and my mom refuses to accept it. The best thing to do I feel ...which is hard...is mention it everyday. For me it may be easier because I physically can't do stuff I used to and it is a 'hard' thing to ignore when I am walking side by side...and then within seconds am 20 feet behind my mom who still goes at her own pace...and she has to stop or turn around, walk backward to get back to me.

An important thing to tell you is...after 2.5 years of symptoms...my mom...is still in denial. When people ask her how I am she says just fine...like nothing is wrong. When I say I am having trouble moving a certain day...she chalks it up to me not walking enough for that day...the weather...which is a favorite scapegoat of hers...or vitamin defencies...despite many drs telling her I am much sicker than this she refuses to accept.

I know it is hard to hear...but there is a chance she won't move from denial. my mom has ignored the fact her mom has cancer for the past 25 years...yes...my grandmother is a 8 time survivor of cancer..still fighting this day... My mom has never been to an appt, a chemo session, or mentioned that her mother is sick in anyway. Some people just can't deal with big things like this...and choose not to. It may help in your mom's case in that she might progress slower since her mindset is 'set' on not being sick...if that makes sense.

I wish you the best of luck...and definately look into possible FTD. However, if your mom has always denied big events in life...chances are...this one will not be any different.
 

hammerone

New member
Joined
Feb 6, 2012
Messages
2
Reason
Loved one DX
Diagnosis
01/2010
Country
US
State
WA
City
Bellingham
Thank you all for your posts and replies. It is helpful to know that others have faced similar obstacles.

I will look do some research on FTD, so atleast I know what we could be dealing with. I doubt we will get her back to any doctor that can further treat her actual illness. She goes to naturopaths, chiropractors, etc. until they tell her that she needs to see a neurologists and then she goes and finds another one. She is constantly coming up with a new diagnosis from hammer toes to gluten allergies. I can be patient and listen on the phone but face to face, it's much harder to go along with her self-diagnoses.

Some of her denial, I think, is how she copes with life anyways. It was nice reminder that
she may never come to terms with this and we can't make her. It's just frustrating because there is so much wasted time, energy, and money.
 

lgelb

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This may sound odd, but she may be the kind of person who has to "see for herself." Could you get her to come down to Seattle or wherever the closest support group is, and talk with "other people with similar problems?" You could also, morbid as it sounds, show her YouTube vids that may clue her in.
I wouldn't think that you have to "go along" with her misconceptions. When you see her next in person, I would say straight out that you can't, and so you can't see her until she is ready to talk about real life. I'm not sure we can presume that denial = FTD if there are no other cognitive/mood/behavior symptoms that are new to you. Nor am I sure from what you've said that denial is a new component of her coping style.
You mention her spending money on alternative diagnosed. If it's money she doesn't have, you may want to look at legal/other mechanisms for safeguarding her resources.
 
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