officially diagnosed

[baker5131]

I posted earlier when we found out my husband had ALS but the Dr. here in Corpus Christi did not rule out everything before telling him (alone in his office!) that he had this terminal illness so we went to San Antonio to see the ALS specialist. Well we're officially diagnosed it's definitely ALS. Every lab and test Dr. Jackson, in San Antonio, ran came back negative (no Lymes disease, no poisoning-metals, no aids,hiv,syphilus, no other neuromuscular disease etc.) We met alot of wonderful people on wed at the ALS clinic(kids went too-our first time) and got to see professionals from several different departments (social work, occupational,speech and physical therapy,ALS association coordinator etc). We do that again every 3months. On thurs we went to see the research nurse for a screening to see if he could get into a trial. So next week he goes on thr to have a lumbar puncture and hopefully the trial medication. There's a 75% chance that he'll receive the drug, 25% get the placebo(fake pill). So now we just live one day at a time and attack the obstacles as they come and the clinic is always there if we need equipment or have questions. Keep us in your prayers that we remain strong through this journey

 

[Robert Mathis]

Stay positive

I'm sorry to hear about the diagnosis. When I was first diagnosed, I went on the Internet to see what I could find out about ALS. Everything I read scared me to death. I had something of a challenge or crisis of faith -- wondering how God could allow me to go through this, wondering how I was supposed to take care of my family, wondering how I could finish my life with dignity, and so on.
Since then, I have learned that fear is more crippling than ALS. I have come to discover that many people, even strangers are very kind and helpful. I have come to appreciate my wife and daughter more and more as they watch me go down. I have come to understand that God can still be on my side even as I walk (very unsteadily) down a hard trail. I think I'm closer to Him now than at any time in my life. And that too is a great blessing.
My progression has been very slow (over 6 years) but it's been very steady. I am still working but I can't use my hands. Fortunately I am in a profession where I don't need to use them that much. And, my form of ALS has not affected my speech all that much.

Enough about me, I only mentioned my experience to let you know that ALS takes many forms.
Don't give up hope.
Don't turn away from people.
Don't lose faith.
God has not abandoned you, neither will your friends both old and new-- let them help you.

Sweet ol Bob

 

[fiddleplayer51]

Kim,
I responded to this news under the General Discussions forum where you also posted it. I'm so sorry about this diagnosis.

Bob,
What a wonderful response. It seems that this diagnosis of ALS has the potential to teach PALS and CALS some valuable life lessons. Thanks for your inspiration and insight.
Peace and all good wishes,
Jane

 

[CindyM]

Hi Kim- I am sorry to hear about the official word. We will help in any way we can.

Bob- you do sound sweet. I like your philosophy! Cindy

 

[baker5131]

thanks bob

Thanks Bob and those who replied I truly appreciate it. Bob it almost sounded as if my husband had written that! I even read it out loud to him right away. It fives hime hope to hear that people do survive longer than the 3-5yrs that textbooks/internet searches give as an average life expectancy. He too struggled with God and the "whys" but now is counseled weekly and is rebuilding that relationship. He's so afraid of what will happen to us (me and kids) and focuses everything on our future. He is so adament that we not see him decline. I wish he would understand that it's not a burden to us to care for him and that we want him around no matter what condition he's in. I'll keep praying, (his onset is upper limbs no speech and sounds a lot like yours) for strength, hope, faith, and love. Thanks again, Kim in CC

 

[quadbliss]

Tell him this month marks 10 years since my diagnosis. :-D

Mike

 

[awieleba]

Quad bliss

You are an inspiration! You are the one person that helped me to think it is OK no matter what happens! If I can see my kids grow for 10 more years then I am more blessed than alot of folks! You show people how to live a life that they did not plan on! I often think of you in New York! You are a hero.

 

[patricia1]

Tell him I am on my 9th year. Never give up never give in
Pat1

 

[quadbliss]

Thanks, awieleba.

 

[freddiesnetty]

Mike you truly are an inspiration, my husband Freddie has had his procedures this past week and the peg put in about 5 hours ago....you truly are an inspiration! I am so happy that you inspired my husband, I really wanted to keep him around for awhile.....
Much Admiration,
Annette Everett

 

[Icanmanz]

Hi Annette! I am so happy to hear everything went well. How is Freddie? I bet he feels better now that all of this has been done, huh? God bless you folks! Are you at home, or at the hospital?

Irma

 

[quadbliss]

Annette,

I am so glad I was helpful.

Mike

 

[anneinma]

Baker I am sorry to hear this. The diagnosis stage is very scary. Live one day at a time. Try and find some small pleasures that bring you both joy. My dear husband looked forward to his martini every day. Some days we went out to lunch and he called that a "two martini day".