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 Progression of Disease Question 
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Joined: Wed Jul 26, 2006 11:14 pm
Posts: 12
Post Progression of Disease Question
My mother-in-law was recently diagnosed as in the beginning to middle stage of LBD. She is no longer permitted to drive. She has a husband, but spends a lot of the daytime home alone. I'm worried about her possibly leaving the stove on. At this stage she still maintains an exceptionally clean home, cooks, etc. However, she has confusion (can't immediately find things, etc.). Would Home Health be available at this stage to just check in on her during the day perhaps? What will the middle stage and later stage of LBD bring?

Thu Sep 28, 2006 8:35 am

Joined: Tue Sep 26, 2006 5:13 pm
Posts: 18
Post progression
bets that I can determine the progression varies from person to person. My mother was shuffling along grouchy as ever and had surgery for spinal stenosis and back pain (I would have thought twice had I known about her LBD diagnosis). that was 4 months ago. She has taken a bit of a nose dive with the disease since then. She has progressed to nearly daily falls and a bit more difficulty with confusion. I think the surgery increased the rate of her progression (she was given promethazine which should not be given to anyone with LBD).
to get to the point (I ramble in person too), I think the progression varies and can vary daily within the individual themself. I would push hard and really push her doctor to support as many services as she could qualify for. I think it may be different for each state, but there are local senior centers and area on aging places that can help direct you. Medicare will sometimes pay for home health aid 3 times a week. also the lifeline button which can help with falls I think is really helpfull.
good luck and I hope it helps

Thu Sep 28, 2006 1:08 pm

Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
Hi Woodallmd. Are you asking how long this illness takes to progress to "The End"? If so, this is something my family and I tip toe around. None of us want to think about it. On the other hand, we have cared for her at home successfully since her diagnosis about 6 years ago now. Her decline was gradual until my Dad passed away in March. Since then, she has declined rapidly. I have expressed my fear of finding her gone when I go to her room in the morning. I think I just want to know how long until "The End" so that I can prepare MYSELF. I work with an MD whose Dad had the same illness. They only had 5 years with him from the time of diagnosis. His Dad has trouble swallowing, so aspiration pneumonia got him. Anyway, I am hoping to care for her at home without her going to a nursing facility. We will see how it goes. Thanks to everyone, I read all the posting and often get answers to my questions without even having to post them. :)

Sun Oct 01, 2006 9:52 pm
Dear Sallyanne,
There is no real way of knowing the future with LBD, it really depends how fast it progresses and other health issues the LBD person may have, Like your Dr friend Father, My husband could no longer swallow, my Husband was dx'ed for 3 yrs but I know the disease went back 9 yrs, I spent so much time worrying about the future and the outcome now that I am on the other side of caregiving I wish I had spent more quality time with my husband and let things take it's course. There is no way we can control the outcome!

Sun Oct 01, 2006 10:33 pm

Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
Irene, you are a saint! I think we have life experiences, good and bad, for a reason. In your sadness and pain, you are helping many other people by sharing your knowledge about this terrible illness. Thanks to you for your time and kindness. :wink:

Sun Oct 01, 2006 10:38 pm
Dear Sallyanne,
Thank you very much for the sweet comments, Yes Lewy took me down a long lonely road, the pain I felt when my Husband died was unbearable at times and one day I realized I wanted to be there for other people who follow in my footsteps with their loved ones, to help them with questions and concerns. I will say my Husband had a classic LBD, there weren't too many symthoms he didn't have, we traveled the lewy road many yrs and I needed to put a positive spin on this disease, it was the only way I could make things right! :)

Mon Oct 02, 2006 7:20 pm
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