Re: General health and LBD - Judy

[Guest guest]

Hi, Judy. My mother will be 90 on Christmas Eve. Late in 1996, she had a

benign brain tumor removed in a long surgery and long recovery back to an

independent life. She was different after that surgery but we chalked it up to

what she had endured and the fear of a possible recurrence. For 10 years, she

had annual follow-up on the brain tumor involving her neurosurgeon,

gastroenterologist, opthamologist and urologist...CT scans and MRIs. The first

sign of a tremor was noted in 2004. Diagnosis of possible Alzheimers, LBD,

Parkinsons was made early in 2006. At her neurologist's insistence, we moved

Mom into an ALF in May, 2006. By September, 2006, it was necessary to move Mom

to the secure unit. By the end of 2007, Mom had lost the ability to walk and

shortly afterward, the ability to support her own weight. By the end of 2008,

Mom required total care. Currently, as always, her lab work results would be

the envy of someone half her age. While she suffered a heart attack in 1989,

her heart remains strong to this day.

(I must note that each of her health crisis events could be attributed to

inattention by her doctors at the time. The heart attack...her doctor ignored

very high levels of cholesterol. The brain tumor was treated by a different

doctor as a chronic inner ear infection for several months before *finally*

agreeing to send her to an ENT who instantly recognized her symptoms as a brain

tumor. We urged Mom to always get a second opinion but she was stubborn and did

things her own way. Only after the brain tumor diagnosis did Mom decide to

listen to others. That misdiagnosis almost ended her life.)

Mom walked daily, even after moving into the ALF. Being moved to the secure

unit was the only time her movement was restricted. By that time, it was a good

thing because balance issues became critical and falls were frequent.

Like Jan, I wonder about the surgery for the brain tumor and the anesthesia.

Mom had to have a knee replacement several years after the brain tumor. Again,

a strong recovery but, also, more anesthesia. Mom struggled to come out of the

anesthesia each time... I also wonder about any possible disruption to the

brain itself via the tumor and surgery.

After watching others in the ALF, I have no doubt that Mom is still alive

because of her strong background in taking care of herself nutritionally and

physically.

On another point you made, it is frustrating to look around and see others

living with Mom that have some of the traits of LBD and feel it has not been

identified. Knowing that the families are the ones in control of medication

issues, I cannot fault the facility or the staff...many families prefer to keep

their heads in the sand. Most are not receptive to learning...some have the

attitude that there is no way their loved one could have the same disease as my

mother. They fail to recognize that symptoms may vary not only from person to

person but, also, from day to day.

Friday, the facility had a state inspection. My mother was one chosen to

examine, probably because of her late stage and a special category held by the

ALF. While Mom was not noticeably aware during the discussion, she was

comfortable. Thankfully, the inspection/discussion was not yesterday because

Lewy was visiting her big time. Her muscles were contracting almost constantly

and she seemed unable to swallow. That means meds were not taken, including

anything that might help with discomfort. I could not feed her lunch because of

that, also. Not a good day. Hopefully, today will be better. She did manage

to take meds last night and eat 1/2 container of yogurt.

Best wishes to you and yours during this journey. Yes, this group allows us to

speak with others who can understand. If someone has not walked this journey

personally, it isn't possible to understand the challenges to a full degree.

Lynn in Florida

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I was wondering if any of the way this disease progresses can be related to the

overall health of the person prior to the onset- meaning in moms case because

her organs are in good shape i.e, no heart disease or diabetes etc-

Has jan or others noticed that being in Prior good health might predict a longer

life span in general than others who have other health issues?