View unanswered posts | View active topics It is currently Wed Nov 26, 2014 1:30 am



Reply to topic  [ 21 posts ]  Go to page 1, 2  Next
 First time posting on the forum. 
Author Message

Joined: Sat Oct 27, 2012 10:33 am
Posts: 3
Post First time posting on the forum.
Hello to everyone. I joined in Dec, but just now brave enough to post. My husband diagnosed in Oct with Lewy Body dementia with parkinsonian symptoms. We live in South Dakota and I am looking for a neurologist in our state or Minnesota that specializes in LBD. We have been struggling for over two years trying to figure out a diagnosis. So last year after he had back surgery, went into a delirium from anesthesia and infection. The neurologist that diagnosed him is from Rochester, MN, but no longer needs to see him, says the family doctor can monitor his meds. But, I am an RN, and that does not seem the correct path. Any suggestions. This is so frustrating.


Sat Apr 13, 2013 8:10 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: First time posting on the forum.
Welcome. If you can easily get him to a neurologist, especially one who specializes in LBD, I'd prefer to do that. Some of his symptoms may be eased through proper medication. I'd suggest reading all you can on here to see what to expect, what others have done, and ask any questions that you need answered. And, always feel welcome to come here for support. 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 Apr 13, 2013 9:20 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: First time posting on the forum.
First, welcome! Hope you will feel at home here. Finding a neurologist specializing in movement disorders is very important because medications can make a big difference early in the disease. My husband resisted seeing a physician for a long time before we finally got a diagnosis from a neurologist. Treatment yielded striking results. I am also an RN but was woefully ignorant of LBD at the time. Finding the right neuro can be frustrating but is so well worth it! God bless.

_________________
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 Apr 13, 2013 9:58 am
Profile

Joined: Fri Apr 05, 2013 6:19 pm
Posts: 19
Location: Maryland
Post Re: First time posting on the forum.
Welcome to the site S. Caster. Don't feel bad that you're just now posting. It's good that everyone can decide when to post/join at their own pace. I did not join until after my mom passed away. I simply did not have the time. Everyone here seems really nice :)

_________________
My mom (83 years old) was diagnosed with LBD and Vascular Dementia. She passed away in February of 2012.


Sat Apr 13, 2013 7:42 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: First time posting on the forum.
Welcome to the LBDA forums, I am glad you decided to post, I am sure you know by now that there are many helpful people here and will be very supportive, I am including a link that might be helpful in finding a doctor !

Good Luck !
http://www.lbda.org/content/finding-doc ... -treat-lbd

_________________
Irene Selak


Sat Apr 13, 2013 9:57 pm
Profile WWW

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: First time posting on the forum.
Welcome to the forum. You are among friends here who understand.

I also encourage you to keep looking until you find a neurologist or geriatrician who understands LBD and connects well with you as the caregiver. If you have that, your journey will be greatly eased.

There are so many things you can do to help yourself and your husband, but it takes time to find your feet and figure out what you need to do. Give yourself that time and space.

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]


Tue May 14, 2013 8:46 pm
Profile

Joined: Sat Oct 27, 2012 10:33 am
Posts: 3
Post Re: First time posting on the forum.
Thank you for the responses. I keep going into "denial". I think. Seems so hopeless to find anyone that understands. Sure helps to have the sun out again and the longer days. I need to connect here more often, so will make that a weekly goal at least. Frustrating disease.


Wed May 15, 2013 7:00 am
Profile

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 758
Location: LA
Post Re: First time posting on the forum.
I wrote on this forum beginning in 2007. I see I entered 33 pages as I searched for answers. Please enter my name, Dorthea, and look through some of the topics as I waded through the search for answers. Much has been found since 2007 but much remains the same. Such as, " He seemed not too bad until the illness...". Also, I note that you are an RN. You will be able to make use of the Dr Boeve suggestions for treatment found in his Continuum. As you are finding, your husband will respond to treatments different but perhaps the same as others. This is not a one size fits all [yet]. As the caregiver, you will know more than anyone what works and what does not. Give yourself all the education you can. You have a lot on your shoulders but you can do it. You will be glad you did. Come back here with questions. Soon, with your medical knowledge, you will be helping others.

Oh, by the way, It would be great to find exactly the correct specialist [Pat and some of the others can help with that] but in my case, one was not available in the beginnig. I ended up with my Family Doctor and the local Geriatric Psychiatrist. They studied in the directions I pointed and allowed me to be a part of the team. It was beautiful. I will never forget them.

Dorthea

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Wed May 15, 2013 11:09 pm
Profile

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: First time posting on the forum.
I agree, Dorothea. Building a team around you is an essential part of the solution to navigating in Lewy Land.

Communication skills are a vital part of what you should look for as you add doctors, pharmacists, therapists, counselors, friends, family members--even your handyman in some cases-- to your team. All these folks must recognize you as the key to helping him. If they ignore you or refuse to listen to your concerns, drop them from your team and find another person to replace them as soon as you can. It will make a HUGE difference.

With LBD, many times you are likely to be the most knowledgable person in the room---at least for a while. That is why they must listen to you. Their ignorance plus a touch of arrogance can kill or permanently harm your loved one. (I always carry a fact sheet about LBD with me with a list of meds to avoid in case we have to go to the ER unexpectedly.)

So be strong, learn, take charge, and build your team step by step. It is doable.

_________________
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]


Wed May 15, 2013 11:46 pm
Profile

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: First time posting on the forum.
can't tell you how many times I used the fact sheet and other printed LB information when I was in ER's, after we were admitted, the nursing homes, the different doctors we went to, etc, etc. I resorted to posting one of the LB info sheets onTed's board by his bed at the State Vet home--which helped a great deal down to the staff that subbed in for his regular caregivers. It helped so much, especially when you've been through so much and can't remember where you parked your car, much less what his meds were. I found my best ally was the neurological assessment from Mayo (or whatever neurologist you see). Besides a wall charger for your cell phone, this was the other must have.


Thu May 16, 2013 11:30 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: First time posting on the forum.
Yes, the one-page LBD Fact Sheet is essential. I give it to every provider and every facility with whom my husband has contact. I also asked [demanded, actually] that no meds be prescribed for him without the approval of his neurologist. Even after giving out the fact sheets and having discussions about medication issues, there have been at least three instances where a practitioner was going to prescribe a strong anticholinergic. You cannot be too vigilant!

_________________
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 May 17, 2013 12:27 am
Profile

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: First time posting on the forum.
"You cannot be too vigilant!"

Amen, Pat, amen!

I feel like a guard dog with her ears always perked on high alert. (That is why I take guilt-free breaks sometimes---to let my ears down.) :lol:

The other 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 May 17, 2013 1:52 pm
Profile

Joined: Thu Jan 17, 2013 9:31 pm
Posts: 38
Post Re: First time posting on the forum.
You are so right about being vigilant about the meds given to your loved ones. One doctor was so arrogant he gave him everything I said not to while he was in the hospital. He actually put my husband into a coma. I called him "007" after that, right in front of him to the nurses.
"007" License to Kill. We never saw that Doctor again.

_________________
Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Thu May 23, 2013 3:41 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: First time posting on the forum.
Good for you, Liz, and sorry it had to come to that. Sounds like the arrogant psychiatrist my dad had, whom I fired. Then the CNP got mad because I fired the psychiatrist and put my dad back on the meds that the head of hospice (an MD) said he shouldn't be on. In Maryland, a CNP can overrule the MD head of hospice. How does THAT make any sense? Good luck to all of you CGs out there who have to fight for your LOs best interest.

_________________
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.


Fri May 24, 2013 9:17 pm
Profile

Joined: Sat Oct 27, 2012 10:33 am
Posts: 3
Post Re: First time posting on the forum.
Hello again,
Very interesting reading all the posts. We are trying camping this weekend, and so far, very frustrating. I am wondering if I will know when it is time for the nursing home. I feel like a jumping bean, caring for all his needs. The weather was raining all day, so we chose to drive home for the night. I had a melt down and could not stop the tears. Life is so not the same. No tenderness or love or support from your husband, just the continued watchful eye to make sure he is clean, dry, fed and safe. The companionship and love seems non exsistant, and when there is a glimmer of normal conversation I get slapped with the questions all over again - "what day is is?, where are we?" etc... Does anybody else feel lonely? Am I wrong to try to continue activities we used to love together? Thank you again for listening, just needed to get my frustrations out to someone!


Sat May 25, 2013 4:02 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 21 posts ]  Go to page 1, 2  Next

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 Maël Soucaze © 2010 phpBB.fr