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 old problems but new diagnosis 
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Joined: Wed Jul 12, 2017 11:29 pm
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Post old problems but new diagnosis
Hi all, my husband has had many diverse symptoms of a "mystery illness" for the past 4 years. After 21 doctors in all types of specialties including 3 neurologists, he was finally diagnosed with LBD during a 7 week hospitalization this spring. During that hospitalization, he was unable to walk for weeks due to severe loss of balance and had 10 days of continuous hallucinations and paranoid delusions before he returned to a somewhat "normal" baseline. He has had so many of the classic LBD symptoms all along - very frustrating to just receive the diagnosis now after all this time.
I am his primary caregiver and we do not live near family for most of the year, although we spend the Summer nearer to our relatives. He does not have any children; and although my kids and his siblings are anxious to help in any way they can from a distance, he is reluctant to accept help. He has always been such a physically strong person and intelligent and learned man, that watching his decline is very sad for me. We have been making adjustments over the years as his physical and cognitive symptoms have progressed. Now we are looking towards the future with new and scary information. Luckily we are still able to discuss our hopes and fears.

One of his primary symptoms has always been excessive daytime sleepiness. This makes it very difficult to make plans to do anything - as it may be a day when he is unable to stay awake and alert. Anyone else have a loved one with this particular issue. I'm glad to be here. Thanks for being here for me.

Wed Jul 12, 2017 11:55 pm

Joined: Wed Jul 12, 2017 11:38 pm
Posts: 4
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Post Re: old problems but new diagnosis
I am taking care of my mother (75) for the last 2 months and I'm w/you on the difficulty of making plans as she also feels tired and sleepy during the day. She has other medical complications but something that seems to motivate her to at least be engaged in some activities outside of bed are the ones she used to do (gardening/walking around) with supervision. You might explore some of those activities he used to enjoy and expose him to such little by little. Also his diet and hydration might improve his desire to be less tired/sleepy.
My mom was at the hospital as well for a bunch of times w/no certain diagnosis until today that she went to see a neuropsychologist who suspects LBD to be the underlying cause of all of her troubles.
Hope you and your husband do fine.

Thu Jul 13, 2017 12:03 am
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