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janicebuf

Active member
Joined
Jul 6, 2005
Messages
30
Reason
Loved one DX
Diagnosis
family
Country
US
State
ny
City
east amherst
Hi Everyone, My name is Janice and this may come as a shock to some
of you but here goes:
I am a 45 year old married mom of two great kids. I have had a lot
of tragedy in my family; my sister died at age 41 of breast cancer, I
have lost 25 family members to ALS, including my dad at 57. My
brother presently has the disease (47) and is home on a ventilator.
My uncle was just diagnosed a few months ago as well. I am not
telling you these things for sympathy. I am telling you these things
because I know and experienced tragedy first hand. The one thing I
have NEVER LOST is my sense of humor! People are amazed how I am
able to keep a positive attitude with my brother's condition and with
the loss's in my life. We have choices to make and I have always
chosen the happy road. I recovered from panic disorder and
personally suffer from ulcerative colitis, an inflammatory bowel
disease. So why the post? Because I know first hand how you feel
and I invite you to email me if anyone is interested in receiving my
monthly newsletter that I recently started. It will focus on all
things positive. I am in the process of putting together a program in
dealing with adversity's in our lives using humor, hope, happiness.
Which by the way is the name of my program. I received a call today
from the patient services director of ALSA and look forward to being
a positive voice for all. God Bless!
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
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Other
Country
HM
janice,

I really don't know how to respond! But anything positive you can give will be welcomed by me!

What type of positive/humorous info will you give?
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Wow, Janice! 25 family members? You have lost 25 family members to als? That's a big number, sweetie! How many families have been struck? What I am trying to ask is how many per household, and the time period? That's a shocker!

Irma
 

Beebe

Distinguished member
Joined
May 2, 2006
Messages
319
Diagnosis
4/2006
Country
oce
State
new jersey
City
forked river
Hi Janice

Hello Janice, I read your post and don't know what to say. 25 family members with ALS. We have my son-in-law Jack who is 43 and not doing well and my daughter his wife who is 35 and was diagnosed with Advanced Breast Cancer a month ago and we are overwhelmed. My heart goes out to you. We all Hope and try to keep up the Humor , Sometimes we have teary eyes but that doesn't help the situation. We have to HOPE! Keep in touch. My Best to you, Beebe
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Hi Janis,

I would love to recieve your monthly newsletter and pass it on. But is there a cost?

We have lots of cancer in our family and have some other loses. My two sisters (both cancer survivors) and I make some jokes that sometimes border on inappropriate but it keeps us going. Our oldest sister died of cancer (12 years of it) and our youngest was killed at age 22 by a drunk/high 16 year old driver. Mom had 2 cancers and dementia form parkinsons. Dad diabetis, heart disease and mental illness. So... my sister in law who just had a stroke asked me how I stay so up beat. Humor helps and faith in God and Jesus helps more. But I think your newsletter could be very helpful to all of our family. Thanks, Peg
 

janicebuf

Active member
Joined
Jul 6, 2005
Messages
30
Reason
Loved one DX
Diagnosis
family
Country
US
State
ny
City
east amherst
Response From Janice

Thanks for your kind words everyone! To answer some questions, it has been 25 (uncle makes it 26) family members that have had this disease. 24 have passed away as my brother is on a vent and personally, I am so glad he chose to live! The time with which they all passed has gone in spurts starting with my great grandfather on my dads side. I'm not sure who before him, though I'm sure there are many. My cousin lost her mom and 2 aunts and she presently has the gene. (A little FYI, she takes rilutek as a preventative measure as she doesn't have the symptoms of ALS yet.) My first cousin died at 21, I believe there even was a 2 year old infant that died from it. My dad, my grandmother, her brother who died of cancer had the gene. We know this because he lost his two kids at 30 and 32.

There is no charge for this newsletter, just something I want to do to brighten your day. I am putting together a motivational program on using humor in dealing with adversities in ones life and feel that I have enough experience to do that:)

If anyone has any more questions, please, please, please, ASK!

Love to all, (yes LOVE, even though I don't know you!)

Janice
 

janicebuf

Active member
Joined
Jul 6, 2005
Messages
30
Reason
Loved one DX
Diagnosis
family
Country
US
State
ny
City
east amherst
Humor And Hope Continued

Hey Guys, I responded to some questions in my last post but need to remind you all to send me personally your email address...I don't think they show up on this forum! Thanks:)
 

Saubier

Active member
Joined
May 1, 2007
Messages
67
Reason
PALS
Country
US
State
MD
City
Colora
Janice,

I'm guessing that your family has the familial form of ALS. My neuro called it Kennedy's Disease. He said only males get it; females are carriers. Is that your family's experience?

Pappy
 

janicebuf

Active member
Joined
Jul 6, 2005
Messages
30
Reason
Loved one DX
Diagnosis
family
Country
US
State
ny
City
east amherst
Response to Pappy

Hi, no it is not Kennedys Disease and both males and females are carriers. My grandmother passed it to my father, etc..aunts have gotten it from their mothers. Your doctor is giving you mis-information. This is familial ALS and it doesn't matter if it's male or female who carries the gene. Thanks for your question!
 

jean

Active member
Joined
Jul 8, 2006
Messages
52
Reason
PALS
Diagnosis
07/2004
Country
UK
State
West of England
City
Goodplace
As Janice says, FALS is not usually sex-linked , but is autosomal dominant , so both males and females can get it. Autosomal dominant diseases usually give a 50:50 chance of inheriting the disease.
Kennedy's disease is sex-linked and occurs only in males. It is a form of spinal muscular atrophy, but with other symptoms as well. It is slowly progressive and usually has a normal life span.
 

janicebuf

Active member
Joined
Jul 6, 2005
Messages
30
Reason
Loved one DX
Diagnosis
family
Country
US
State
ny
City
east amherst
From Janice

Hi Jean, yes, it is autosomal dominant...i was going to post that but you explained it so much easier than me...

AnnMarie, Hi. To answer your questions: I believe the reason they found the SOD1 gene was through my family history. With respect to heredity..As Jean said, if it is an autosomal dominant gene, and it sounds like it may be, than your Uncle passed it to your 2 cousins, my guess is your aunt definately had als but wasn't properly diagnosed. What does that mean? That means that anyone with that blood line can carry the gene. HOWEVER, someone may carry the gene and never actually get the symptoms of the disease. It does not mean your cousins have a 100% chance of getting it either. Chances are 50/50.

My brother was 45 when he started showing symptoms. My uncle didn't start showing symptoms until he was almost 70. His daughter is my cousin who died at 21 from als. Now, the question is, why did his daughter get it and he never got it until so much later in life? My dad was 57, grandmother 59, cousins 30,32, and several distant cousins in their 40's.....how old were your family members?

My brother started with bulbar symptoms. Only one other family member started that way years ago. Why did he start with bulbar when my uncle and 98% of everyone else started in the limbs? This is why I say your aunt probably had it and was misdiagnosed because even with our strong family history, the neuro couldn't confirm it. I was like, 'are you kidding me? It doesn't take a rocket scientist to figure out this is what it is.' He gave my family false hope which wasn't so good either.

Another question I keep raising is the fact that I have ulcerative colitis (a cousin to crohn's disease), as well as psoriatic arthritis (cousin to rheumatoid arthritis). These are auto immune diseases...what does this mean? there is alot of controversy that als is auto immune as well. Is this my 'disease?' or does this mean I will get als? Who the heck knows. I can get the blood work to tell me if I have the gene but why bother when there's no help at this point. by the way I am 45 almost 46, but I don't look it:)
 

janicebuf

Active member
Joined
Jul 6, 2005
Messages
30
Reason
Loved one DX
Diagnosis
family
Country
US
State
ny
City
east amherst
To Ann Marie

Hi again Ann Marie...I don't really know who is a PALS and who is a CALS...with that being said, do you yourself have als? i'm just curious. I agree with your post, very confusing. How old was your mom when she died? Crazy, I know Ann Marie, you would think in this day and age we would be further along with treatment. My dad died 17 years ago in October and I specifically remember him saying that we kids didn't have to worry, that by the time we get older there will be treatment...haha. we aren't any further along (except for rilutek) than we were then. hopefully, soon. because it's all about hope isn't it?
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Good Morning Annmarie! Yeah, it would be a blessing if they would turn up with a cure for als soon. I can't believe there isn't one yet. I have been watching the Jerry Lewis Telethon for years and years. I grew OLD watching Jerry Lewis raking in those millions, and the numbers on the board rolling like mad, and a lot of these folks dying from this monstrous disease, including my son, and a lot of these PALS on this forum waiting for a cure, and NOTHING! What is going on? Why are they turning a blind eye to als? My son went to the grave praying, hoping and waiting for a cure. He'd be glued to the tube, read the paper from start to finish, lloking for a miracle on the net, any kind of hope, and he'd tell me, "Mom, I don't think they'll ever find a cure for this disease."

Tell me Annmarie, am I the only one that feels that way or what?

Irma
 
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