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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
LTCVT -
As I recall from this article --
http://community.lbda.org/forum/viewtopic.php?t=1844 --
the two most common confirmed diagnoses are Alzheimer's Disease and vascular dementia. In addition to those diagnoses, of the brain donations I've assisted with, other diagnoses that have shown up are: PD and PSP.
Robin


Wed Feb 10, 2010 1:19 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Reba -

A note about EricSEA: He's certainly one of the smartest laypeople I know. I consider him a friend, and saw him a few months back. His FIL died quite a long time ago. Like many whose LOs are gone, the caregivers have moved on to other things in their lives.

As he made very evident when he was here, he stopped coming to the Forum by policies of the LBDA.

His FIL's brain was donated to medical research. He will have to be the one to share the confirmed diagnosis.

Robin


Wed Feb 10, 2010 1:24 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 736
Location: LA
Post breaking point
My dear fellow human beings. We are now seeing what can be referred to as a certain stage in this illness know as Lewy Body Dementia. Not for the patient but for the care giver. We enter the arena thinking now we "know" what it is because we see what is described here as a typical case and we live with unanswered questions. The life we live is hard whether we are newbies or have already walked the path and are so weary with trying to pin point all the nuances which manifest themselves daily. Its maddening, so maddening we need to scream and scream...

Yes, doctors tell us various things. We want to give them info as to what we know but we can't get "proof" to make them so we search and everything we "need" to know can be found here on this forum but it requires studying and hard work... Harder than any of us thought possible. Please let me compare our studies to a class room or college courses. We start college as freshmen knowing very little about subjects therefore we must take 101 classes. However, we become impatient with the basics and want to go to the Prof. teaching the 400 level. We must learn the ABCs first and it can be done only by going back and studying the materials already covered in 101 [or in this case, previous questions and answers].

We have been where you are now and asked those same questions and begged for answers finding in the end that we take what we can get as help without knowing what our LO is being treated for. As for me, I accepted the fact that the symptoms were being treated and I worked within that frame while being determined to learn as much as I could here. When I did not understand the high level maerials, I studied harder.

Bulldogged, stubborn individual that I am, I determined that if no one would give me an answer, I would bide my time and make plans for proof-positive diagnosis ie: brain donation. I set about with my plans and the process seem daunting... I wanted to do it from my home without any help and one day say, "SEE! It was Lewy Body" or else I could silently slink away with my tail between my legs. However, the task was too much for me, alone.

I timidly reached out to Robin, thinking she is so busy and so much out of my league, she won't have time for me. How wrong I was, all I needed to do was to let her know I was serious about wanting the answer and she took me by the hand [so to speak] and guided me through the steps... when I faltered, she did it for me. ever encouraging, never allowing me to feel I was in this alone... I just needed to keep stumbling as she would lift me again and again. We reached the final days together. She even "thought" for me when I was in the final days and could no longer think any more. All this was carried on through email as she gave her time and knowledge to me, asking nothing in return except that I remain true to the cause.

I wanted to leave this forum many times, calling myself The Impostor because I did not have a diagnosis and could not proclaim to say I did. My LO reaching the age of ninety could not travel for studies to have a psuedo diagnosis while alive so we lived with what was and treated each according to what I had learned previously.

I received the report a few weeks after his death and it was the most rewarding information I could imagine. The anxiety i had lived with all those years was lifted. Yes, it was LBD. Yes, he was in the early stages of Alz. Yes, he had experienced many tiny strokes. Yes, I had treated him properly and there had never been any chance that I could have "made him well". And,yes, I could not have found my way through it all without Robin. She has devoted her entire life to helping all of us understand what we are going though all she requires of us is that we do our "home work". What answers we need have been given on the pages and pages written before. It is up to us to search and study. Find the level of friends we are comfortable with here and converse with them. No need to carry on a conversation with someone you do not care to talk with. There are too many others to choose from.

My original group has deminished so I'm feeling very lonely here myself but I enjoy watching other groups form. Please, everyone, find the group you are at ease with and learn these lessons together so you will be able to help others who come on board. Newbies are joining everyday. They need us and the medical field needs our help. We offer the brain donations and they will find a way to give us help with understanding more. Self study and brain donation preparation and friends on this forum is the only approach to walking this walk with any degree of calmness.

My dears, I love all of you and wish the best for everyone.

Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Wed Feb 10, 2010 1:59 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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martha wrote:
Is there a rul against quoating?
I find it helpful whenIam on a forum and read a post and dont knwo what theyare referign to, but i fthey have a quote
then the post makes sence.


Martha,
First I must say welcome sorry I have been scarce this week or so I have had a death in the family. I am glad that you found the forums and they are here for everyone that needs it's use. Second There is NO RULE about putting a quote in a post that you reply to.I hope that we can be helpful in helping answer some things in your situation.
Hang in there!

_________________
Irene Selak


Wed Feb 10, 2010 3:07 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 736
Location: LA
Post More about misdiagnosis
Lynn, and others, you may be interested in reading the posts by Franks2ndaughter. For you new comers, if you have not used the search words [see above], you can put in a person's name and find all posts written by that person.

The URL below will take you to one person who answers the question you have been seeking for the past few days.

http://community.lbda.org/forum/viewtop ... ght=#10641

Dorthea


Wed Feb 10, 2010 5:53 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3366
Location: Vermont
Post 
Thanks Dorthea - for you "old pros" on this site you have the historical perspective that the newcomers don't have. I always appreciate your posts! Lynn


Wed Feb 10, 2010 6:18 pm
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Joined: Wed Dec 12, 2007 4:53 pm
Posts: 88
Location: Melbourne Beach, FL
Post Diagnosis and Brain Donation
Hello,

Since my husband died, I haven't posted very much. Like Dorothea and others who have lost LOs, I still "check in." By the way, Dorothea, Charlie died before Mr. B and yet I still have not had a report from the brain autopsy at Mayo JAX.

When I first found this forum, it was such a relief. I learned so much and found so many kindred souls. Also, when I first began to post, I too felt "belittled" at times. With the passage of time, I began to feel "a part of" this close knit family of caregivers. I learned that we all have different personalities but we all have caring hearts and common experiences. It was almost the end before I realized that my sharing was beneficial, mostly to me, but to others as well.

My husband was able to voice his wish to donate his brain at death, so I reached out for information. Robin helped me immensely and contacted offices that, in turn, contacted me and after many months I finished the paperwork. Because I wanted to furnish as much medical history as possible, it took extra time to acquire copies of all the records and, when completed, it gave me a little bit of satisfaction to have done my part. From the time of diagnosis, I kept a log of Charlie's behavior, physical symptoms, and all his medications with his favorable/unfavorable reactions to each. I included that information with all the medical records. Charlie died less than a month from the date that I finally submitted all the paperwork. I received the instructions on who to call and what do upon death only about ten days before Charlie died.
Please consider brain donation. It is such a wonderful gift to the living.

Dementia is so emotionally damaging and caregiving is so physically damaging, we cannot escape unscarred. Caregivers need this outlet so much, especially the times when we are able to laugh at ourselves and see ourselves in others' shared experiences. I will never personally meet all those people who shared my journey but most of them will always be a part of me and warm my memories. Caregivers, especially those who live in Lewy Land, need all the support and information they can find wherever they can find it. Just take what you like and leave the rest.

Joy


Wed Feb 10, 2010 10:43 pm
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Post To Martha
Your situation is very similar to mine. I just lost a long post to you so more tomorrow.
Sharon10


Wed Feb 10, 2010 11:46 pm

Joined: Sun Feb 07, 2010 10:41 am
Posts: 12
Post 
irene selak wrote:
martha wrote:
Is there a rul against quoating?
I find it helpful whenIam on a forum and read a post and dont knwo what theyare referign to, but i fthey have a quote
then the post makes sence.


Martha,
First I must say welcome sorry I have been scarce this week or so I have had a death in the family. I am glad that you found the forums and they are here for everyone that needs it's use. Second There is NO RULE about putting a quote in a post that you reply to.I hope that we can be helpful in helping answer some things in your situation.
Hang in there!


thank you Irene for the welcome and for clearing the right to quote
I do have a suggestion for the forum, it is maybe the administrator could add a spell check?
This forums layout is so identical to the poodle forum I am on, and for years it went without a spell check and then recently it was suggested by a member and was added.
I tend to type in a hurry and leave out letters :roll:
and some words, I honestly dont know the right spelling and no time to look the word up :lol: .
So you guys that explains it when you see letters left out and misspelled words....Ithink it comes out clear enough to get the message across. ......most times anyway,if not ask and I will try it again, Im not here to impress anyone with my typing skills or lack of correct spelling.
But spell check would help


Sat Feb 13, 2010 5:29 pm
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Joined: Sun Feb 07, 2010 10:41 am
Posts: 12
Post 
when researching for a reason for his actions I found this site and am passing it along if anyone cares to read it
http://www.healthtree.com/articles/deme ... mentia.php
note the four signs under diagnosing, He has all and they started over 3 years ago.
Naturaly he may and probably does have some vascular dementia
. But the stiffness and fluctuating and slow gait and shuffleing of feet started before his main stroke 3 and half months ago.The first stroke was mild and didnt require therapy


Sat Feb 13, 2010 5:51 pm
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Joined: Sun Feb 07, 2010 10:41 am
Posts: 12
Post 
Reba
If you are reading the forum and not posting, do come back when you have time to post ,as I did.
I and others understand
the memerbs who are caring for and living with a dementia person dont have as much time to post or read as the ones whose LO has passed on.
At least I dont ,since I dont have the $$$ to spend for around the clock or half a clock of hired help. To be able to do that would be nice.


Sat Feb 13, 2010 6:02 pm
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Joined: Sun Feb 07, 2010 10:41 am
Posts: 12
Post 
mockturtle wrote

this forum is all about support and encouragement and only secondarily for information.

I agree , and to add to that .
a place to cry on another shoulder if needed
and vent our frustrations after a bad day or night if needed
and know the other shoulder will understand, medical knowledge cant replace that


Sat Feb 13, 2010 6:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3366
Location: Vermont
Post 
Martha and others - the chat is a great place for a shoulder to cry on too, or to vent, or whatever you want. Last night a group of us clinked our glasses together and chatted about everything and anything. If you haven't tried it, you might want to do so. And be patient, as many times there is no one there. But if you leave the chat open so you can hear when someone else comes on, you can go back to your computer and make some new friends! Lynn


Sat Feb 13, 2010 6:24 pm
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Joined: Sun Feb 07, 2010 10:41 am
Posts: 12
Post 
thanks that sounds good for members. But I stay so sleepy , and behind on so much, I wont be able to do that , maybe I can later if and when things start to run smoother.


Last edited by martha on Sun Feb 14, 2010 5:20 pm, edited 1 time in total.



Sat Feb 13, 2010 6:44 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
martha wrote:
[
spell check would help


Martha,
I will mention it but I beleive we looked it to it before!

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Irene Selak


Sat Feb 13, 2010 7:09 pm
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