Status
Not open for further replies.

FrancesA

New member
Joined
Sep 8, 2009
Messages
3
Reason
PALS
Diagnosis
08/2009
Country
US
State
OR
City
Banks
In the last two weeks, I've been diagnosed with familial ALS. Been having symptoms for several months & finally realized it wasn't getting better and started the process of getting answers. Really expected it to be MS and not ALS. Mom has MS. Dad, Grandpa, great-grandpa, aunt, and a couple of dad's cousins had ALS.

ALS Specialist confirmed the ALS diagnosis last week. It has been a heck of a couple of weeks. I have two small children (age 7-1/2 and nearly 5). My 7-1/2 year old is a childhood cancer survivor. Diagnosed with Ewing's Sarcoma April 2005, underwent a year of treatment and has been 3-1/2 years cancer free. Side-effects, however, are tremendous.

Are there familial ALS patients/caregivers on this forum?

Started Rilutek this week. Thinking of joining the Arimoclomol trial. Any thoughts?
 
Hi FrancisA
I am sorry to hear about your condition and with a young family and all the problems you have had to deal with already.

You will find, i am sure people on this forum in similar situations as you and i have found that thay are all only too glad to help you.

cheers:)
Peter
 
Hi FrancesA,
Welcome to the forum, sorry you had to find us. Sounds like you have already endured so much. ALS if familial in my family. My mom recently passed from it but was the first to die from it in around 40 years (I think). Her Grandmother, Unlce, and several cousins had it many years ago. It wasn't something we really thought about when she started symptoms because the disease hadn't made an appearance in so long, at least not in my life time.

I imagine you are quite young having such young children. My greatest fear in life is getting ALS and leaving my children, its something I think about more than I should.

You will find great support here. I'm glad you joined the forum.
 
Hi FrancesA,
So sorry to hear your diagnosed :[ It is never easy and sooooo much more horrible when you are young and have little ones. We also have a small child [12] and that is so difficult. What can I do to help you? This forum is such a fabulous resource. Have you contacted your local ALS and MDA Association? I too am glad that you found your way here. Sending you hugs.
 
Thanks all!

I turned 40 this year. It is tough having little ones and knowing that I (mommy) may not be there for certain milestones. In my dad's case (his ALS started in the bulbar region-he opted for no trach), he died 7 months after the first symptoms. In my aunt's case (hers started in an extremity - don't recall where and she opted to have a trach), she survived 2 years, but the last year was bedridden with very little ability to move.

Mine has started in my left leg, which is now very weak and difficult to get to cooperate with me. I use a cane sometimes and if there is a lot of walking to do, I will use a scooter. Around the house, I generally walk - however slow & deliberate. Got myself a handicap permit. We already had one for my daughter, but that doesn't help if she isn't with me.

I worry about how my girls will handle it all. And how my cancer survivor mentally retarded child will "freak out" when she needs to see the doctor or do more tests, knowing that the doctors can't fix mommy. As of yet, we haven't really explained it to the girls. They know that mommy's leg is bad, but they don't know more right now. We'll tell them more as time goes by.

Will get in touch with the ALS Association soon, but haven't gotten there yet. One step at a time...

When my daughter was fighting cancer, we learned to take things a day at a time, an hour at a time or a minute at a time. And we learned to find joy in each day and live life today, because we don't know if there will be a tomorrow. The same holds true here. We are trying to enjoy good days now and have fun with the kids.

Thanks - Frances
 
Frances,

I, too, am sorry you've gotten this diagnosed. I believe you can be around for a long time to come.

We're here for you!

Zaphoon
 
Frances, I am truly impressed with your attitude. I believe it will take you far and like Zaphoon said you can be around for a long time to come. I am really sorry you got this diagnosis. You are clearly an amazingly strong woman and your family is lucky you have you. What an example you are for your children! I think you are an inspiration.

I'm glad you found this forum. There are remarkable people here who will support you and give you the best advice.
 
Frances, I am also a relatively new diagnosee, but I am older (54) and don't have children. But I just imagine what you are going through, since I seem to be in the same spots. Sounds like you have the fight to live strongly in you. I have, and will accept any mechanical assistance to stay here as long as I can. Keep fighting, This disease is highly variable, and you could be here long enough to see your girls grow up. Here's hoping, and keep fighting.

Perry
 
Francis -
My husband is 36 and a new diagnosed also. We also have small children (5 and 2). Right now the 5 year old knows daddy has problems remembering things, hides things (he forgets where he puts things) and his muscles act funny. She knows we are doing the ALS walk to help daddy's doctors make him better. We have left it at that. We will cross each bridge as we come to it. My 2 year old is blissfully unaware - as is my husband who also has demenita. He does not grasp the seriousness of his condition. I spoke to a couple different counselors and doctors and have decided this is the best route to go for us. We will reaccess the need-to-know situation with every progression and re-evaluation. Best of luck. Feel free to contact me - we all need support.
 
Shelley,

I like the picture of the family in your avatar - lovely!

I'm sorry your husband has been affected so with dementia but I really love your attitutde and methodology of handling things.

I hope you are getting all of the support you need!

Zaphoon
 
Francis
I am so sorry about your diagnosed, I don't have familial als, I have als I was diagnosed in 1991 I was 30 years old had a son 1 a daughter 6 and Doctor told me 2/4 to live that was almost 19 years ago my wife left me after 1 year but I had to be strong for my kids, I guess what I am saying is never give up please, now my son is 19 in 2nd year of college and my daughter is 24 and she gave me a beautiful grandaughter so you never know what is going to happen, You take care and God Bless you and your family.
John
 
Status
Not open for further replies.
Back
Top