Happy BD to my Ileo and quick update

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peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/4/2008 2:26 AM (GMT -6)   
24 years ago this month for me!  Now that I typed it, it is hard to believe that it has been that long.  Whew - time does fly by.  24 Plus to go, I hope!
 
Quick update on my husband's ALS diagnosis....  I can see quite a difference in the muscle atrophy just in the last month or so, esp in his left hand, arm, shoulder.  His legs are changing rapidly too.  Climbing on a ladder or stepping up on a large step is getting more difficult.  Long walks, ie going to the Nascar races, etc, are really fatiguing for him.  His dexterity and fine motor skills are rapidly changing.  I haven't noticed any speech issues yet.  We have a long road ahead of us.  I sure hope that the supplements or RX drugs we are trying kick in soon.  It is really hard to imagine what he really must be feeling, though he has been more emotional about this than I have EVER seen him in all the years we have been together.  A real tough cookie to swallow all the way around.
 
As some of you know, we are within a couple of months of moving into our "retirement" home we have been building for about a year now, and doing a lot of the work ourselves.  Each little project has become a larger project because of lack of strength from both of us, ie. we installed our smoke detectors yesterday evening, which doesn't require a lot of strength by any means, but does require working with tools above your head - ceiling level.  Took about 2 1/2 hours to do a job that should have taken less than an hour! 
 
But we are plugging away at it.  Sometimes it gets really frustrating, at which point we just have to laugh about it.  We even get the "giggles" at some of the stupid scenarios we get ourselves into!   What else ya gonna do?!  (Deep down ya wanna cry though.  And we both have our moments.)
 
Thanks for listening to me ramble..  any and all good thoughts and prayers for us would be appreciated.
 
p.s.  My Chinese food issue I believe turned out to be a kink or twisted area in the intestine and has resolved itself once again.  Thank goodness.  Back on the road again......almost back to a normal diet.  But dropped a few pounds that I really didn't need to lose in the meantime.
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/4/2008 9:50 AM (GMT -6)   
gosh peggy you just can't catch a break lately can you? i always hate to hear about something like that happening to anyone, but it is even worse when it is someone you know. Glad your chinese food problem is over, lol.
I don't have experince with ALS first hand, but a friend of the family's brother in law has it and he started on some meds a while back and they did help him some. He was really bad off though when he started them, he had had it for like 15 years or something. a really long time. I really hope they help your husband, and i will def keep you in my thoughts and prayers.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/4/2008 10:10 AM (GMT -6)   
ALS is a nasty disease. At the time of diagnosis in March, they told us that normail life span is 2-5 years, but there are some that beat the odds. We are hoping that is us.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/4/2008 7:17 PM (GMT -6)   
Peggy-you and your husband are in my thoughts!!  Anne

ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 7/4/2008 7:33 PM (GMT -6)   
Peggy,

Thanks for the update. I've been thinking about you and DH. I pray the meds kick in for him and he gets his strength back. So glad to hear the kink got worked out for you and you're feeling better.

(((HUGS)))
Control is an illusion. The only control we have is our response to people and situations. - Kim Martin


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/4/2008 8:45 PM (GMT -6)   

Kim,

Maybe it was a stress induced kink, ya think?!!

 



Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 7/5/2008 9:08 AM (GMT -6)   
Peggy,

You know when I was dealing w/ my small intestines spasming after my surgery my surgeon was telling me about how stress effects the gut. I started taking xanax with my meals and the spasming stopped. I found that incredible that treating the stress stopped the pain. The body is truly amazing. But hope you don't have anymore episodes.

Happy Ileo bday! :)

((HUGS))
Control is an illusion. The only control we have is our response to people and situations. - Kim Martin


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 7/5/2008 1:33 PM (GMT -6)   

Glad you are better, Peggy. Chinese is no no,right?  Stress is what put me into this ostomy situation in the first place-I'm convinced!!Speaking of Chinese, my neighbor went to China for a new treatment of some sort for ALS.  We were really hoped up about it ,and he was better for a few months. Plus,  he and his wife had an unforgettable trip. However,it wasn't the cure we were all expecting. The point that lots of new  research is being done is encouraging though.   Jennie

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 7/5/2008 2:49 PM (GMT -6)   
Peggy:

I am glad to know the Chinese food problem has been resolved. I truly admire your determination and resolve. You and your family are constantly in our thoughts and prayers.

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/5/2008 3:51 PM (GMT -6)   

Peggy,

You and Scott are always in my thoughts and prayers. I really hope the medicine helps him regain his strength. I'm glad you're feeling better and are getting closer to finishing your beautiful, new house.

Love, Cece


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/5/2008 6:01 PM (GMT -6)   

Thank you to all of my buddies for the good thoughts and prayers. 

Happy 4th of July weekend!!!

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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