View unanswered posts | View active topics It is currently Thu Apr 24, 2014 3:14 pm



Reply to topic  [ 10 posts ] 
 Husband has LBD; need specialist? 
Author Message

Joined: Tue Jun 12, 2012 10:22 pm
Posts: 9
Location: Northern California
Post Husband has LBD; need specialist?
My husband is 81 years old (I am younger) and he was diagnosed with LBD a month ago. I was not totally shocked at the dx because he had some symptoms a year ago after surgery that led me to suspect LBD, after researching his symptoms (movement and balance problems, hallucinations, delusions). But he was back to his usual self for over 6 months...so we thought he was fine. Denial is a powerful thing.

Marc is in a skilled nursing facility right now but hoping to come home if he can regain strength with PT and OT.

We have a 13-year-old son and this has been tough for him.

I'll write more another time, just wanted to ask quickly now if anyone knows of a LBD specialist in the San Frandcisco Bay Area? Thanks.

_________________
Cherie, CG to husband (81) with LBD


Sat Jul 07, 2012 8:47 pm
Profile

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Husband has LBD; need specialist?
welcome. this place is a wonderful source of info and support.. sorry for your need to be here, but glad you found us!!!

im in cali too.. but farther south.. robin will probably know a few good docs for you!!

good luck and stay in touch~~

cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 1-14,released to memory care..


Sat Jul 07, 2012 9:49 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3125
Location: Vermont
Post Re: Husband has LBD; need specialist?
Hi - so sorry for your need to be here. If you read the posts on here you'll see that rarely do people "get better" with this disease, particularly the elderly. I'm not saying hope isn't a good thing, but false hope can be devastating. He may be able to work hard at OT and PT and get better for a while, maybe enough that he could go home and that would be great. It may be that with this disease, though, he is unable to do the kind of work that needs to be done due to cognitive as well as physical issues.
There are some books that have been discussed here before geared towards children understanding about their LOs condition. I can't remember the names but you can try a search of key words like "books for children" and see if you can find it. I am so sorry for your son too.
I hope you'll come back here often for info. and support. Others may know of drs. in your area and be able to help with that. All the best, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Jul 07, 2012 10:46 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Husband has LBD; need specialist?
Welcome to thew LBDA forums, I am sorry for your need to seek out such a group and I certainly understand your concern with having a 13 yr old son as my son was just 13 when his dad passed away, its hard on them but young people are very resilient.
As to a Lead for the SF area Try the University of CA Neurolgy dept 415-476- 3896

Good luck !

_________________
Irene Selak


Sat Jul 07, 2012 10:57 pm
Profile WWW

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Husband has LBD; need specialist?
Welcome to the forum. As the others have said, it's sad that you have to be here but I'm glad you found us! Great place for information and support. We're all in this nightmare together.

Lewy has been called the 'roller coaster' because of the up-and-down nature of its effects. But Lynn is correct that no one really gets better in the long run. There is considerable fluctuation from day to day or week to week but the decline is, alas, unavoidable. If there is an infection, like a UTI, there will be an improvement when it is resolved, however.

Even so, we all work hard to optimize our loved ones' conditions so they can enjoy what quality of life is possible. While your husband is in the facility, it would be a very good time for you to collect your thoughts and plan for the future. Get your ducks in a row, so to speak.

God bless you and your family!!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 07, 2012 11:22 pm
Profile

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: Husband has LBD; need specialist?
Cherela, hugs to you and your family.
Irene has given you a good place to start. Finding an LBD specialist will be very important to all of you. A good one will guide you as your husband's caregiver. Building your whole medical team will give you some sense of control and you will know that you are doing all you can.
Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun Jul 08, 2012 5:10 pm
Profile

Joined: Tue Jun 12, 2012 10:22 pm
Posts: 9
Location: Northern California
Post Re: Husband has LBD; need specialist?
Thank you all for your replies. I couldn't access the forum from my iPad and finally today got downstairs to the PC. I'm still learning my way around the forums, so sorry if my replies are delayed. Also I have insomnia on and off and lack of sleep makes it difficult to accomplish anything. Too much stress!
I know LBD will get worse, not better, and so does my husband Marc. That's part of what makes it so difficult.
I've read about LBD on this web site as well as a book about LBD. In fact I find, as probably a lot of you do, that I have to educate the medical people we encounter about LBD. I've printed copies of the LBD Fact Sheet for healthcare professionals and hand it out whenever we meet a new doctor or nurse or PT. After two trips to the ER, two hospitalizations, and two SNFs in the last two months, I've only found two medical personnel who even heard of LBD -- one one of those was the neurologist who diagnosed Marc.

Is there a way to spell-check these messages?

_________________
Cherie, CG to husband (81) with LBD


Fri Jul 13, 2012 3:33 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Husband has LBD; need specialist?
No spell check here on the forums !

_________________
Irene Selak


Fri Jul 13, 2012 5:04 pm
Profile WWW

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: Husband has LBD; need specialist?
Cherie, we don't care if you misspell anything here. We look past that to your heart, so don't worry about it.
And it does not help to hear that LBD will get worse, does it? That is stating the obvious for no good purpose in my opinion and only serves to make us all feel worse and drain our energy for the task at hand.
In fact, depending on the stage of the disease and the expertise of the doctors along with a dose of positive attitude of those caregiving, there can be seasons of improved symptoms for some patients with LBD. Some of us on the forum are living proof of that.
LBD is definitely a cruel and progressive disease, but especially in the earlier stages it may be managed in such a way to turn around or soften bad symptoms for years. This can give many good days to a family.
This is not always the case, but hope should never be dismissed or misnamed as denial when those options are possibilities. It could be that removal of a bad medication can also remove a bad symptom, or stress reduction could mellow some symptoms, or addition of the right meds in the right amount could bring relief for a season.
I hope you find the right doctors to help your husband. That could make a huge difference. If we had stayed with the doctor who diagnosed John, our story would have been so much sadder because he did not believe in hope or proactive treatment of LBD. We found one who did and it made all the difference for us. Five years later, John is still in early stage. He was slipping away, but was returned to us.
Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Fri Jul 13, 2012 9:54 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Husband has LBD; need specialist?
Yes, getting proper medical treatment is essential. And difficult!!! Most general practice physicians and many neurologists lack experience with treating LBD. Since my husband was well into the disease before agreeing to see a neurologist [for problems that didn't exist, he insisted], when he did, on a referral from his DIL, a neurosurgeon, he was able to gain back a lot of function through diagnosis and medications, namely, Stalevo and Exelon. Though the positive effects did not last, they made a big difference for a while.

He has seen four neurologists [we moved, so in part it was of necessity] but only two of them were specialists in movement disorders and only they were able to help him. I have a note in his chart at the SNF insisting that any medication ordered for him for any reason must be approved by his neurologist. As you may have already read on this forum, there are too many things that can go wrong with mismanaged medications.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Jul 13, 2012 11:13 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 10 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr