introducing myself

[jackberry]

hey folks,

my name is jack. i live in racine wisc. just diagnosed wed as the stretcher took me out of they neurologists office on wednesday. dr told my wife then that he suspected als. he had wanted to do an emg test of my left leg but that didn't happen. went into the er. my wife called my mother who is 91 and my sons to come up and visit. my mother is in denial about this. she thinks it will all go away and life will proceed to her plan. she has buried her brother, sister both parents and her husband. i am an only so i can understand her denial. then to a room. was let out yesterday after the bp came down.

i am sure this sound familiar, i have been ekg'ed, mri'ed with and without dye, cat scanned, and had a neck mri 2 weeks ago. the neurologist did an emg test of both arms a couple weeks ago. unpleasant is being gracious describing it.

i used to type with three fingers but that is in the past. now just 2 or 3 fingers.

had the slurred speech since feb. thought it was part of the sinus infection. weak arms started in april. finally convinced myself something was wrong 3 weeks ago.

i just learned there is another als victim around the corner from me. that is why that nice house is for sale.

i'll be reading the threads to learn more.

 

[Ms. Pie]

Hi Jack! I love the name Jack. I'm sorry you're here and glad you're here at the same time. You can get pretty much any question answered by these good and knowledgable people here. I assume you've registered with ALSA and gotten in contact with them. If not, I recommend doing so. They are very helpful.

Big Hugs,

Marta

 

[kmendsley]

Hi Jack. Like Marta said, you are welcome here and please ask any questions you may have! Also venting is good, if the people in your life just have 'too much' denial than you can deal with in a day. Glad to hear you are out of the hospital now...keep us updated on your condition!
Peace,
Kell Bell

 

[jackberry]

thanks.

i think my wife registered earlier from work.

we were over the road drivers. she managed to snag a pt position with a company in town in a dept she had previously temped. a 12 week assignment. i know the dept lead will do all she can to keep her around.


the emotions running wild are a problem. if i so much as see something touching i get weepy. man church is gonna be tough sunday.

 

[Ms. Pie]

Yes, crisis mode. I know it too well. Once this all settles in it will be easier. If you can get some help from your GP like Xanax or something like that for the first part of this that helps tremendously. I wish I could give you a great big hug. Speaking of hugs, take any that are offered. They're wonderful.
{{{{{BIG HUGS}}}}}
Marta

 

[EGBAR]

Welcome Jack, Sorry your here but glad you found it. I was just diagnosed in June myself. Without this forum and the people here I think I would have lost my mind. I still might, but I am holding on ok. This is a real kick in the ass to say the least. But you know the saying. If you are given lemons make lemon-aide and look for a guy that was given vodka so you can get together and have a party. You got lemons and I got vodka we will meet here and deal with all this. Contact me if there is anything I can help with. I am new to this too.

 

[jackberry]

first great als story

great story.....our neighbor has an indian jewelry shop in town and travels around the state selling to other shops. yesterday he came home and we were out in the yard. he starts in on the traffic, the construction the drivers(and here we were over the road drivers. like this stuff is new to us , right?). so my wife takes a call and looks at steve and says, ask jack how his day is going.

THUD!

yeah, i bet i don't hear anymore traffic sucks stories. ha ha.

 

[Ms. Pie]

Funny and sad at the same time. I hate what this news does to the people I care about. It rips one's heart out. It definately puts a different color on the world. Circle your wagons and hang on tight. We're all doing this together. You and your sweet wife are not alone. There are many caregivers here as well.
Love,
Marta

 

[trfogey]

Hi, Jack.

Sorry you have to join our little group.

The emotional swings you are having may be caused by something called pseudobulbar affect, also known as emotional lability. A lot of ALS patients get it and it can make life a lot tougher to deal with. There is a new drug that helps this problem. It is called Nuedexta and came on the market early this year. Ask your local neuro about it. No reason to suffer through turbulent emotions if you don't have to.

I don't know whether your local neuro has or is planning to refer you to a specialized ALS clinic, but I'd strongly recommend getting that referral if you can. The clinics are an incredible resource for all things related to living with ALS or caring for someone with ALS.

Once again, sorry that you have to be here, but welcome anyway.

 

[jackberry]

actual the dr was planning on sending me to froedert hosp up near miilwaukee. they evidently are the als specialists in this area. we were also told that by a friend who's husband died from als about 5 or 6 years ago.

weird, 2 people on the same block and three within a 1/4 mile. might be the water or the air.

 

[susanf]

Jack,
Welcome and sorry about the diagnosis. I'm a newbie too (3 weeks). You've found the right place for your questions. There is a lot to digest. Get with the ALS clinic ASAP. They will get the ball rolling for you.
They diagnosed 5 people in 2 weeks in the Tampa area. Rare disease? I'm wondering now.

 

[jackberry]

the other thing i am currently having a problem with is, when i talk after a few minutes i collect a lot of phlegm in my throat. i can never draw it up and out . sometimes it flops over the trachea stopping my breathing. i resolve this with warm water to drag the phlegm down my throat.

one thing i have discovered that helps is gatorade. probably like you i have hyperreflexia. ione of the causes of it is a lack of electrolytes. a tall double scoop of g-ade keeps them at bay. pedialyte would probably do the same thing. the gatorade comes in powder keeping the expense down.

heading out for fish fry.
be back.

 

[joni51]

Hi Jack sorry you are having to be here. We will try to help all that we can, so don't feel like you have to go through this alone

 

[Georgia Peach]

Hi Jack

This is a wonderful forum full of people that are going through the same anguish. I've found a lot of useful information here and lots of support.

My husband self-diagnosed himself six months ago and the ALS Clinic in ATL confirmed his first neurologist's findings. One thing that we were told that has stuck with us is that ALS never stops. You mourn the loss of the use of your foot, then you have to mourn the loss of the use of your other foot. Or like with my husband his balance is gone. He falls and he falls backwards. His disease started with fatigue and right foot drop. He is tired and weak if he does anything more than nap in his bed and look at youtube. He has to let me chauffeur him around and complain about my driving! But I treasure each day that we are together.

Hang tough. This disease is not for the weak of heart.

 

[twinmommie72]

Welcome aboard Jack. All the passengers here are the nicest people you will ever meet. It is my conclusion that the smartest, funniest, most considerate and loving people get this disease. So welcome to the elite! Big hugs and cant wait to hear about the fish fry!

Michelle