Re: "bulbar-onset rarely misdiagnosed"

Dave C · 11-05-2009, 09:44 PM

Hello - my wife was dx with ALS in March of 2009. this is my first response on this web community, partly because i am pig headed / partly because i am introverted and think i can solve anything.

I would like to say I have been following this site for a couple of months and am impressed by the support I have seen.

I would have started a new thread or blog but couldnt quite figure out how.

We are the parents of twins (boy/girl) that will be three in January and I am crushed by the deterioration of my wife to date. we first noticed problems in Jan 09 and before we knew it she had lost 25 pounds and her ability to eat, swallow, and talk (except for me and her mom). I am looking for someone to "talk" about this with as we have two young children and it is progressing very rapidly.

Sorry if my post here takes away from the thread.

Dave

hopingforcure · 11-05-2009, 09:53 PM

Hi, welcome to the forum, sorry you had to find us, but so glad you have reached out. We are all a family and try to support each other through the virtual miles. How wonderful twins, they must just be so special. So sorry you wife is progressing so fast, gosh this disease is not a friend to anyone. Does your wife have a peg tube? bi-pap? do you have much help? I know how hard twins would be for a healthy family, let alone what your family is facing. My son is fourteen, and I have been ill since I was 39, thought I was in the prime of life, gosh you never know. I am sending a invitation to post anytime we are here.

Dave C · 11-05-2009, 10:01 PM

Does your wife have a peg tube? bi-pap? do you have much help? I know how hard twins would be for a healthy family, let alone what your family is facing. My son is fourteen, and I have been ill since I was 39, thought I was in the prime of life, gosh you never know. I am sending a invitation to post anytime we are here.

Thanks for the thoughts, the kids are wonderful, though i worry about them on a different level. Jen (my wife) had sugery for the peg tube in August and BiPap at the same time. They seemed to have stopped the weight loss but her lack of Bulbar ability (which was her onset) doesnt seem to help much.

In a matter of less than a year, Jen has gone from a strong woman, to someone that needs assistance to get dressed and go to the bathroom. Is this normal progression? I wont lie.....i have tried to be strong through all of this, not only for Jen but the kids. Our son started calling me "mommy" a couple of weeks ago that has me VERY worried. I dont know what to do.

Sorry if i sound panicy....but i am.

Micheline_h · 11-05-2009, 10:11 PM

Dave, There are alot of wonderfull, beautiful people on here that will be willing to lend an ear. I'm sorry to hear about Jen. you can ask about anything here and they'll help with input on their own experiences. I have teenagers, and i thought that was tough, but little ones wow. my onset was my legs, but as of late my arms are beeing affected, breathing alittle. I do have homecare that helps me with all my personal care. Have you contacted your local ALS. They have lots of info and can definately help you guys. I'll check back with you later

Micheline

joelc · 11-05-2009, 10:20 PM

I am so sorry to hear of your situation. It is hard but we are here to help however we can! Ask anything you want and we will all do our best to answer. We are here for you and Jen.

Dave C · 11-05-2009, 10:21 PM

Thanks Micheline, we have been moderately active with the Les Turner Foundation (e.g. the walk) which is local to Chicago I think, so far we have Jen's mom (only relative local) to help during the day with the kids and Jen, since my company is only willing to pay me for X number of days off. I have been told of the IL Medical Leave Act (or something close to it) but that only guaratees your job and doesnt pay the bills. SS Disability has been applied for and approved for Jen which is helping financially.

Dave C · 11-05-2009, 10:34 PM

thank you both. I often am at a loss for what to do. Jen is irritable (reasonably) the kids are kids (reasonably) and I am left with an hour of downtime (which comes out of sleep but I need it)

paleshia · 11-06-2009, 07:32 AM

love and prayers for you and jen and your twins......i can tell you as the pals and the wife, i am so sorry for the burden i am/will be and the love of my husband means everything to me.....thanks for your care of your wife and kids...take care of yourself too

take care and tell jen another jen with als is praying for her

kelly · 11-06-2009, 08:35 AM

Dave...my youngest son was 3 when my hubby was diagnosed..can totally relate to the pain that you are feeling. I have learned that I must accept help..and can't do it all alone. If someone offers to make a meal...take it...if someone offers to watch the kiddos..accept the offer. I hate to say it...but get use to no downtime....not sure what that even is these days. I do try to take one hour to walk each mornig before I start our daily routine. I got some really solid advice last night..that was really helpful. This is the phase of your life that you will be dedicated to your wife and children. YOu will have downtime again sometime..but now is not the time. I hope that is helpful..it was for me. I hope that it made sense?!?

mytwoboys · 11-06-2009, 08:55 AM

Hi Dave,
My boys were 8 and 5 when my husband was diagnosed in May 2007 - limb onset. His progression has been normal - he is now wheelchair bound with use of only a couple of fingers and a little movement of one arm - his FVC was 41% as of a couple of weeks ago. He needs assistance with everything. I won't lie - it's tough. The boys are now 10 and 7 - trying to work in homework, his care, the house, a full time job, all the paperwork... I have no time to myself except driving to and from work. Like Kelly said, it's a new normal. There are days when I wonder if I can make it - but the kids need me. I do absolutely whatever I can to keep it as normal as possible for them (sports, activities, etc.). We have no family within 3 hours of us - so it's on me - but they need and deserve it. It's pretty intense every day - when I step back and look at everything going on - I won't lie - it can be very depressing. You will find great support here - and plenty of people
in similar situations. Don't panic (which I still do from time to time) - prioritize and take care of the most urgent problem/situation at whatever moment you are in (which can change from day to day). I tell myself "one day at a time" and pray myself to sleep every night.

rowland's wife · 11-06-2009, 09:49 AM

my husband was diagnosed 13 months ago with bulbar als they say it is different for everyone ,he is also dependent on me for all his care, he doesn't want a feeding tube, I feed him we take it slow. his speech is hard to understand it is so frustrating sometimes, he has a machine that he can type on but his hands no longer allow him to do that. we have a 8 year old son, lately I can tell it is hard for him to see this happening to his dad, to see him go from being strong to being in a wheelchair unable to walk or feed himself in a years time, I hate this disease. I understand what you mean about not having time to yourself, we all need that to reenergize, but most of the time theres just not time for it.

valentine · 11-06-2009, 12:50 PM

Hi sorry to hear about your wife , i wasDx Nov 24 will be year with the same. is your wife taking the rilutek drug? it seems to slowed the progression for me, ihavent gotten any better nor worst. I know it is not easy everything changes.

brooksea · 11-06-2009, 04:27 PM

Dave,

Welcome to the forum. There are lots of caring people here.

It must be very hard for y'all with 3 year olds! Our son is 9. He was 6 when my husband was dxd. Right now we just take whatever is thrown at us and do the best we can.

Good luck to you and your family!

Kate · 11-07-2009, 01:57 PM

I just lost my friend of 38 years to bulbar ALS. She was diagnosed 3 1/2 years ago. She and her husband chose to go it alone without the help of any support groups and minimal family help. It was tough to watch. Reach out and take all the help you can get. Get yourself setup with whatever kind of home care you can find, you will need it. Don't wait until you absolutely have to have help. Start now so you and she are comfortable with the people coming into your home to help you.

Anastasia · 11-08-2009, 08:25 AM

Adding you guys to our list of "friends" to care and share with.
We all feel alone in so many ways , but ,as this site proves , we are not alone.
SOME DAYS ARE DIAMONDS, SOME DAYS ARE STONES!
Lets all enjoy the former when we get the chance.
Cheers, Anastasia.