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Joined: Mon Feb 23, 2009 6:18 pm
Posts: 1
Post Help
My mom has had Parkinson's for several years. Now she has become paranoid and combative and is having hallucinations. Like she sees holes in the floor and thinks people are floating on the ceiling. She believes there's a "ring" at the nursing home of people who she can't trust. The nursing home was getting ready to ask her to leave, when we contacted the state Ombudsman. He met with her and said he thought she had Lewy Body Dementia. Today we took her to her Parkinson's doctor and wanted to specifically ask about Lewy Body. We had laid the groundwork by talking with her nurse about the issues we wanted to address. The nurse requested we bring along a copy of a brain scan mom had. When we had the appointment, the Parkinson doctor wouldn't talk about any of the dementia issues. She seemed almost angry. Said she deferred anything to do with mental health to the psychiatrist. I asked specifically about Lewy Body and she responded "you can call it anything you want. It's just like heart failure. If you have heart failure, you'll always have heart failure" I didn't understand that at all. Even with heart failure, you get a diagnosis and treatment. She was short with us and rude. I cried all the way home, it was so frustrating. I joined this group to get some advice about what to do next. I read the information on this site for 2 hours last night and I truly feel Lewy Body is what my mom is dealing with. I'd like to try to find out who might diagnose her in my area. We live in the Twin Cities in Minnesota.

Any advice or ideas of physician who specialize in this would be most welcomed. We'd be so grateful. There are five of us siblings, and we've tried so many different living arrangements and medical routes but no one seems to be willing or able to help us. We're so frustrated. We're trying our best, but our efforts seem to get met with apathy or resistance. Truly we are trying our best.


Mon Feb 23, 2009 9:25 pm

Joined: Sun Feb 22, 2009 8:57 pm
Posts: 6
Post re help
I am new here too. Sorry about your problems. Just posting this website because these are the folks at mayo who might know something. Maybe someone from the group will know something about one of them.


Mon Feb 23, 2009 9:43 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
That kind of responsiveness (or non-) from a physician is not acceptable. That would be the last time we would go back to that doctor. Definitely go to the Mayo Clinic in Rochester! Try to get a consult in Neurology with someone who knows about LBD (and not just with a movement disorders specialist -- they usually deal with PD issues). You'll be shocked at the amazing level of patient courtesy at the Mayo. I'm sure Irene or Robin will check in with some specific doctors there. Good luck and keep us posted!

Renata (and Jerome-in-Heaven)

Mon Feb 23, 2009 10:44 pm

Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Hello JanS, happy to meet you.

It both saddens and angers me to hear of Drs. who think they "know it all", are ignorant of LBD and have an attitude such as what you described.
I do believe I would report this doctor. The attitude was totally uncalled for.
You did not say, or I did not see, what medications your mom is on.
The incorrect meds or dose can play havoc with our LOs minds.
Don't waste another Mayo immediately. You need an appointment with a good neurologist.
Wishing you and your family the best. This is a tough road we are on but we somehow make it around the next bend everyday.


Dianne C.

Mon Feb 23, 2009 11:44 pm

Joined: Thu Feb 19, 2009 12:45 am
Posts: 103
Location: St.Paul
Post Doctor in Maplewood Minnesota
I, too, had problems finding a good doctor. Call Doctor James Adams at Attending Physicians in Maplewood on Beam ave. I took my LO there and he is wonderful! He was referred by a friend whose father had him and they too thought he was great. Can't say enough good about him. He took his time and has actually called me several times to see how my LO is doing on new meds and what I think would be better/worse. He called my LO's pyschiatris (sp?) while we were in his office to coordinate meds, etc. and made appts with a neurologist, CT scan and others. He completely took over and it became a TEAM effort instead of me trying to get someone to listen to me and feeling alone and adrift in a sea of nowhere. Call tomorrow. All the people in the office are so nice and helpful.

Tue Feb 24, 2009 1:14 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)

How horrible! Dr. Boeve from Mayo Rochester sort of referred to this type of neurologist when he said that there are many MDs out there who think that there's nothing to be done for LBDers so why bother!

Definitely see Dr. Brad Boeve at Mayo Rochester. He's on the LBDA Scientific Advisory Committee.

Seeing a psychiatrist isn't a bad idea for LBD but not for the reason the movement disorder specialist indicated.

Sounds like the state ombudsman is a gem!

After you get a proper diagnosis from a compassionate physician, I do hope you'll write a complaint letter to the first MD and copy the state ombudsman on it as well. That sort of person should not be practicing medicine anymore.


Tue Feb 24, 2009 3:25 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Dear Jan,
It is letters like yours that keep people like Robin & myself here long after our own losses because
it is appaling to think there are doctors that treat poeple like this, your mom deserves the very best in medical care and the family deserves peace of mind with the care they are providing for your mom, follow Robin's advice in getting in to see Dr. Boeve, Please keep us posted as to the turn of events and yes when your mom has her DX and I would sit down and write that complaint letter.
Good Luck and I wish you and your family well !

Irene Selak

Tue Feb 24, 2009 7:47 am
Profile WWW

Joined: Sat Jan 31, 2009 7:21 pm
Posts: 172
Location: Ohio
Jan: you've received very good advice here on how to address the bad behaviour of the first physician. If a doctor cannot help then a kind word is in order with advice on where to go for answers. Rudeness is never acceptable! Please keep us posted on how things work out for you & your family. I surely do see lots of resouces to assist you including the wonderful people on this board. Good luck. Dee

Tue Feb 24, 2009 2:57 pm

Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
Hi Jan and welcome to the forums. That so angers me about your doctor, there is no excuse for that at all - I feel that if she knows nothing about LBD then it is up to her to be up front with you and maybe look into things instead of putting a person off like that. I agree with what all the others on here have said you should do.

Tue Feb 24, 2009 11:06 pm
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