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mlbugge

New member
Joined
Apr 4, 2008
Messages
4
Reason
CALS
Diagnosis
12/2007
Country
US
State
il
City
waukegan
In October 2006 (just 18 months ago!) my husband was putting an addition on the garage to our recently purchased home. In early January 2007 he took a fall at work (caused by ALS?) and injured his knee enough to require a full knee replacement. That is where our nightmare began. Due to workman's compensation complications, etc., he did not get his surgery until July 2, 2007. His orthopedic surgeon explained that the typical recovery would allow him to return to work in about three months. He went through the customary therapy but not only was he not improving, but he was becoming less and less mobile. His weakness moved from his legs to both arms. We were then referred to a neurologist. I will spare you the details of the countless tests they ran (not uncommon from what I've been reading on this site). But it was not until December that we went to Rush Medical Center in Chciago where he was finally diagnosed. They referred us to UIC (Univ of Ill Chicago) Medical Center where we are now part of their ALS Clinic. Words cannot explain how thankful we are for the medical attention he has received from both Chicago facilities. My husband is now confined to a motor wheelchair, as he can no longer walk at all. He also has very little ability to work with his hands. He can no longer feed himself, etc. His speech is slow and kind of slurry. I am very afraid of how fast his condition has deteriorated. He is still able to eat anything, although he has had a couple choking episodes - very scary! I would like to know what to expect next. I guess there's really no way to know, but if anybody's disease progression has been similar to this, please help me with some insight. I discovered this site a couple days and have been reading non-stop. It took me a couple days to decide that I could be a participant as well as a reader. It was all of your candid comments that gave me the courage and I thank you all.
ML
 
Hi ML, I'm new here to. My husbands pfogression has not gone quite as quickly as yours has. I just wanted to say "have hope, and Always try to find a peaceful place in your heart. This site seems to be full of alot of great people. I hope that it helps you.
 
Caregiver for husband

Although I was a caregiver to my husband with ALS, I found more support, knowledge of this complex disease, and yes, love from this site. You have come to a great site with a lot of knowledge.
Hang in there and use this site as your tool of information. These friends know from actual experience and will keep you abreast of what you are about to experience.
Even though each individual is different, like a snowflake, there are smiliar trends, I feel. However, as this disease progresses, slow or fast you will know how to cope and treasure each moment you have with your loved one. Never give up.
So sorry, you two are having to experience this dreadful disease. but glad you have the support of this network of friends.

Hugs,
Caroliney
 
Hi ML. So sorry you have to be here. Will certainly keep you and your husband in my prayers. I have been on this forum almost a year. I joined it right after my son (38 yrs) passed from Als, 15 mos. after diagnosed. It was heartbreaking. It will soon be a year since my son passed, and I still miss him so. I am planning on doing something nice for his 1st yr ann'y. We are having a special Mass for him on June 1st. I am so sorry to hear about what you and your husband are going through. My son's progression was speedy towards the end, too. May God bless you both.

Irma
 
As I read your post, I too try to look for answers as to what happens next. My husband's progression has not been as agressive as your husbands. He suffered burns on his feet in January, 08 and diagnosed with ALS in late March, 08. His first symptoms were in Jan. 07. I have come to realize that there is nothing we can do but fight. I encourage all of my friends, family, coworkers and even people at the hospital to read about ALS. I write emails to elected officials in hopes of getting research continued for ALS.

I will keep you and your husband in my prayers,
Aleta wife of former Marine, Charlie
 
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