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baker5131

Member
Joined
May 5, 2008
Messages
19
Reason
CALS
Diagnosis
04/2008
Country
US
State
Texas
City
Corpus Christi
My name is Kimberly I'm 39 and my husband is 42. We live in Corpus Christi, Texas with our three children (Justin 19, Amanda 14 & James 9). We have been together since I was 14yrs old, will be married 21yrs this November. I've been ferverently combing the website and reading post after post looking for anything I can get: support, answers, hints etc. I'm so totally devasted by this news. My husband was diagnosed by a neuro doc 4-23-08(so this is al new to us). He said it was sporadic ALS. We don't know anymore specifics (as to whether its fast/slow progressing-which I learned from reading this site). He has lost 75% use of his left arm in 2months, fasciculations roaming to shoulders, right arm and legs now. It seemed to increase after we started Rilutek and Lithium. We go to San Antonio soon (I hope-they're still coordinating appointments) to see an ALS specialist and more testing. So I guess we aren't officially diagnosed til then? I have so much more to write but have to go to work (RN with pediatrics).
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Hey Kimberly,

Sorry you are having to visit this forum, but rest assured you will find lots of info and lots of caring people to answer any questions you may have.

Let us know how the appointment goes.
 

baker5131

Member
Joined
May 5, 2008
Messages
19
Reason
CALS
Diagnosis
04/2008
Country
US
State
Texas
City
Corpus Christi
Thanks

Thanks for the reply. I'm learning that I'm not the only one out there dealing with this and its a comfort to read entries. Thanks again, Kimberly
 

clewbcg

Active member
Joined
Apr 9, 2008
Messages
42
Reason
CALS
Diagnosis
09/2006
Country
US
State
Utah
City
Heber City
Hi Kimberly
I'm so sorry about your husband. Mine was diagnosed 9/06. I know how awful it is to try to get your mind around the news. We are still trying. I just found this website about a month ago, and it has a lot of information and very supportive people. It has really helped me not feel so isolated. We have found that you really do have to take things one day at a time. Welcome to the forum-sad you have to be here. We have an excellent clinic in Utah, but I have found answers to many of our questions by reading the posts on here. My thoughts are with you.
 

JACKIEMAX

Distinguished member
Joined
Jan 22, 2007
Messages
159
Country
US
State
TN
City
Baxter
Als Diagnose

There Are No Two Patients Alike. My Husband Was Diagnosed One And A
Half Years Ago, Although He Got Symptoms One Year Before That. He Is
Now Bedfast And Can Do Nothing For Himself.

Being Told A Loved One Has Als Is Devastating As It Is Terminal. God
Has A Plan For Us All. We Are All Going To Leave This Earth One Way Or
Another; It's Just That Als Is So Rare And So Debilitating That On This
Forum, Posts Are By Patients, Caregivers And Some By Just Family Or
Friends, But It Is A World Of Information And Encouragement.

Come Here Anytime, Ask Anything, And You Will Receive So Much
Support And Love Here.

Jackiemax
 

Diane Rae

New member
Joined
May 7, 2008
Messages
6
Reason
CALS
Country
US
State
Ca
City
Claremont
Kimberly,

My husband was diagnosed in march of this year, and we got confirmation via a second opinion April 2. We believe that he has had ALS for about a year, and knew by the end of 07 that something was seriously wrong, but our son was getting married in Feb. and we decided to put off finding out what it was until after the wedding. Now we are glad we did, because the wedding will always be a happy memory for us.

I know what you are going through. I had trouble eating for several weeks after receiving the news, and everything I ate went right through me. I was tied up in knots and lost 10 pounds. It takes some time, but the shock and the fear you are feeling will begin to subside, and you will have good days and bad days. We are Christians, and our church family has been wonderful to us. When I am having a bad day, I can call my sister, or someone from our church and cry it all out. My faith is giving me new eyes in the way I see things, even the little things in our lives.

But as I told my husband, he's not dead yet, so we are going to live and live well. We went out with friends and laughed - and I mean really laughed. I didn't think it was possible to laugh again, but we sincerly had fun. We are leaving for Hawaii next month and plan to have a wonderful time!

My husband has arm onset, and is beginning to have a little trouble speaking, but his legs are still strong. I am finding that the medical "experts" don't always know what they are talking about, so if you have questions this forum is a great place to get some answers.

God bless you, Diane
 

JAMEYER

New member
Joined
Jun 28, 2008
Messages
3
Reason
Loved one DX
Country
Aus
State
South Australia
City
Adelaide
Recent Diagnosis

Hello,

I am reading about very similar effects for my brother - the loss of use of right arm and hand and a slight effect on speech within a 6 month time frame with use of legs still pretty strong.

My younger brother is also on riletek and lithium as well as attempting to live in a 'pristine' environment - huge amount of supplements daily, visits to natrupath for massage and therapy, nutritionist, hand therapist, no sprays, only organic foods, no grains, lots of water. He is a very positive approach which is being assisted by a wonderful hypnotist.

I am interested in what your therories are for our family and friends to get to this point?
My brother suffered with ross river fever for many many years and also had shingles a few years ago - both dreadful virus's.

Austalia has an MND DNA Database for research and I have made contact and we are taking part. I am gobtaining a number of papers that have been published and will post information here.

Take care
J
 
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