I was recently diagnosed with LBD with Parkinsonism: Any advice?

Posted by dgriffith24 @dgriffith24, Jul 17, 2021

I was diagnosed with LBD with Parkinsonisms last October. I live in rural Southern Illinois snd I am having a hard time finding a neurologist familiar with my diagnosis. I know no one with this disease. So my question is, does anyone else have trouble with slobbering, slurred speech and stiffness and body pain all over? Some days it is debilitating. My Aracept seems to be working well. I’m on the lowest dose of Carbadopa Levadopa. Is there anything that helps with these symptoms. I am 60 years old and had to go on disability my illness is so bad. Thank you for any help or any advice you can offer.

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Mike Hovis | @hovism9 | May 26 12:09pm

In reply to @hovism9 "Diagnose also with FTD" + (show)

No PT, OT

sillyblone | @sillyblone | Jun 5 8:28am

I have 2 men in my life that have Parkinsons. My Dad had lewy body disease and so does my brother. My Dad has sinced passed. My brother who is 66 yo is in Stage 5 and had LBD very early on. He also is in hospice now. My husband does not have LBD yet. I empathize so much. I would look into finding a movement disorder specialist that is a neurologist. Look on your nearest Parkinsons.org association as well. You sound like you are frustrated with this horrible disease and just need the right fit for a physician. Continue to fight and know you are not alone.

sillyblone | @sillyblone | Jun 5 8:34am

In reply to @dgriffith24 "Yes. I live 2 hours from St Louis and my doctor at Mayo has referred me..." + (show)

My husband has the orthostatic hypotension. He allows me to help with anything he has to pick up . A reacher may help you alot. Certainly not a cure but a big help.