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Lewey Body Disease (My Mom Just Was Diagnosed With It)

1desperateladysaved

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1desperateladysaved Proficient
1desperateladysaved
Posted

I would like to hear from anyone that has celiac or the genetics for it.  Has there been any of your relatives that has suffered from this disease.

 

Also, if anyone knows of a positive link to celiac please supply any information you have.

 

D

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mamaw Community Regular
mamaw
Posted

helpguide.org  has  info  about  lewey body disease... I  tried  to  paste  it but  for  some  reason  it  didn't  work....

I  know  nothing  about  this  disease  being  associated  with  celiac disease.......when brain function & mobility  is  involved  I  always  am  willing to try   dairy & gluten free  for  a three month  period to see  if  it  slows  down the progression.....blessings  to your  family....

cyclinglady Grand Master
cyclinglady
Posted

So sorry to hear about your mother.  I haven't read about a link between Celiac Disease and Lewey Disease.  Please continue to take the time to take care of yourself!  Your mom's going to need you.

mommida Enthusiast
mommida
Posted

Wow D.

I'm sorry to hear about your mom's diagnoses.  Do you know any common genes involved with Lewey?  When we discuss genes associated with Celiac here, we are using a very shortened abbreviation of the HLA strand.  We do have some very infromed members of the forum, but quite a few members are MIA!!?

 

As a side note note...  Someone I know was working with some Alzheimer patients and closed head injuries.  I asked if it would be helpful for a "memory board" for the patient.  (Stole the idea from 50 first dates movie)  I would hate to wake up every morning and not be "in the know" for my life.  I don't know if these people awake with a moment of time memory.  Like a mother thinking her child is 2 years old and freaking out they are unattended.

 

Maybe this is something you work on with your mother to pick and choose pictures, write out tidbits of information.  She may want to "confess" certain things.  (My grandfather would slip into coherance and talk about being scared to death the Natzi's were trying to take him to be a translater because he could speak 7 languages.  He was very young, Too young to be a soldier.)  I think sometimes those fears need to be known and much easier to calm the person from becoming combative.

bartfull Rising Star
bartfull
Posted

Prayers for your Mom, and for you. (((((HUGS)))))

1desperateladysaved Proficient
1desperateladysaved
Posted
  • Author

My Dad is primary caregiver.  I am hoping to be like my Dad.  He got in the kitchen and learned how to make meals for mom saying, "She did it for me all those years, I suppose I can do it for her."

 

Mom's delusions include that my family has hurt her terribly, so I cannot be there very much.  Mom also wouldn't eat food I cook.  I do feel helpless. 

 

The lack of response about people having lewy body disease in their family would suggest to me that there is perhaps not a link?

bartfull Rising Star
bartfull
Posted

Don't know of a link, but my Mom had dementia. They SAID it was alzheimer's, but I believe it was because she stopped going for her B12 shots.

 

Anyway, Mom's dementia had her thinking her family was against her too. I was her only caregiver and it was so hard! I had to keep reminding myself that it was the disease talking, not her. Please, if you need advice or just a shoulder to cry/lean on, know that we're here for you. If you need to talk you can always PM me. Dementia in a loved one, especially when it makes them contentious, is about the most difficult thing a person can go through. Great big ((((((HUGS)))))), and I'll be here for you if you need me.

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mamaw Community Regular
mamaw
Posted

It  is  so hard  when a loved  one  develops  a  cruel  disease  as  this... Please  take  time  for  yourself &  try to  focus  on  knowing  this  isn't  your  Mother  talking  when  she is  distrustful..........

Could  you  cook  some  meals  &  have  Dad  put  them in  fridge  & reheat, would  she understand  that  he  didn't  fix  it?  That  way  you  would  feel  &  are  helping.. And  remember  Dad  also  needs  a  break &  lots  of  comfort  as well.... He  must  be  a great  human  being.. Not all would  do this..... 

Peace to all

1desperateladysaved Proficient
1desperateladysaved
Posted
  • Author

Dad asked me not to cook, because Mom wouldn't eat it. 

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