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 Small world in LBD 
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Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post Small world in LBD
Hi everyone,
I have a very interesting story about what happened at my Mom's foot
doctor this morning. We got there and the doctor was running over an
hour late, due to an emergency, so we had to sit and wait in the
waiting room. While we were sitting there I noticed this
woman across from us, around my age, and she kept looking at us.
Well after about 15 minutes I got up to stretch and went down the
hall to get a list of Mom's medicines that I had printed out at her PC
doctor. When I came back that woman was sitting next to the spot
where I was sitting. So there was the woman, myself and then Mom. I
smiled at her and she said to me, "I'm sorry for listening, but I
just lost my Mother and I was listening to you talking to your Mother
and I am so sad I could just cry, wishing I had my Mother here with
me". I said I was very sorry and she seemed like she wanted to talk
so I asked her what her Mom passed from. She then looked at me with
this strange look and said, "Dementia, with Lewy Body"...I almost
fell off my seat...I nodded to her and gave her glance with my eyes that she knew what I meant. :roll: .so that my Mom wouldn't see or hear anything. She said to me, "I knew it, because I was listening to the things your Mother was saying and how she was talking and walking and she sounded just like my Mother" I was floored...we continued to talk as Mother was just nodding and looking out the window. I gave her an LBD brochure and she said I was the first person that she ever met that knew what LBD was and she was so happy. Can you imagine in a foot doctor's office??? We continued to talk for about another 45 minutes off and on, in between Mom and along with Mom. We were seeing the same Doctor and we were in rooms across the hall...so while the Doctor was working on Mom's feet I talked to her some more...and she told me the details of her Mother's passing, very sad...We kissed and hugged and it was just an instant bond between us...she wished me luck and walked away with tears in her eyes because she said she knew the pain that was to come...and she said I made her feel better because I helped her realize that it would be selfish for her to want to keep her Mom in the pain that she was in. She agreed but she is still angry, naturally, that she had to get it at all...She was only 72 when she passed...and now her Dad is not doing well...she said her Mom was always great and had not one health problem or took one medication until she retired...and then B A N G...this darn disease...
Well, I thought it was an interesting story because my Mom still has a
primary care physician that calls it Dementia with possible LB...and
here's a stranger that knew from watching and listening for an hour
and she knew it absolutely.. .of course me, I go in and out of
denial...but, thanks to this group the links and the stories and the
CD and everything I have read and learned...my denial stage, I think
has finally passed me for good.
My best,
dhill :(

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Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Mon Nov 13, 2006 11:17 pm
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Hi Diane,
What an interesting story for sure, this is the very hardest part of this disease is reconition. I have had the LBDA Tape for months now and just finally watched it yesterday and was floored to hear the 800 thousand families are dealing with this and yet so few know anything about it. Doesn't surprise me that this woman picked up on your Mom, caregivers know the fine tuning of this disease far more than any doctor, just think about what you gave this woman yesterday............ you gave her peace in knowing her Mom wasn't alone in this disease......... You know we have talked about this before in e-mails how much I miss my husband.. not a day passes where I wish I could make him appear but I do know in my heart that this is the selfish part of me. I know him leaving set him free from this horrible disease, he often told me he couldn't go in the body he was in on lucid days


Tue Nov 14, 2006 9:33 am

Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post 
Hi Irene,
Yes, it was a very interesting encounter to say the leat. She was a very sweet woman and I felt so bad for her. I think I did make her feel better because I came right out and told her that I wished I were her and wasn't sitting there watching my Mom suffer and knowing what she would probably have to go through in the future. Naturally, we all wish that our LO didn't have to get sick in the first place, but I try not to ask those questions.
Well, I am exhausted..spent all day today at Mom's, it was her 79th birthday and it was a bad day because she didn't sleep last night at all due to charly horses in both her legs, from her groin to her toes. So she said she was up walking the entire night and it finally subsided early this morning...when she doesn't sleep...forget it, she is really out of it.
I am going to a lecture in Boston tomorrow...called Lewy Body Disease Vs. Alzheimer's Disease presented by a Professor of Neurology from Harvard Medical School. Hopefully, it will be good...but, I need to get some sleep...I am exhausted...
Take care and talk to you soon,
Diane

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Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Tue Nov 14, 2006 10:53 pm
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Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
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Hey girl,
I agree that this is a small world. This chance meeting was so meaningful and helpful to you both it seems that it was meant to be. Everything happens for a reason. :wink:
I recently read something that said that a LARGE percentage of Alzheimers patients do actually have LBD. I cannot believe physicians are not up to speed on this disease. It's shameful. :x The elderly just do not get the same care as younger patients. There is research on MS, Parkinsons, AIDS, Breast Cancer, don't get me wrong, these are all worthwhile causes. All I am looking for is some acknowledgement that this illness exists. I know there is no cure, but please educate the medical profession and the public so that patients and families and get a correct diagnosis.
Maybe we can get involved at a Federal level to get some research funding for LBD. I'm going to write my Congresswoman!!!
Sallyann


Wed Nov 15, 2006 3:20 pm
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Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post Lecture in Boston, November 15
Hi everyone,
You go Sallyann, give 'em hell. :wink:

Attended the lecture today give by the chief of neurology of Mass. General Hospital, Boston... Dr. John Growden. I wish we had thousands of Doctors like him around. I was very impressed. I don't think there were any surprises. He did talk about the PET scan for DXing LB. Lots of good pictures with the slide show. I took notes, not too many, and I lost my notebook. :D I think I may know where it is.
One of the best parts of the lecture was meeting a wonderful lady that I met online in the LBD cargivers support group. She is from Boston area also so we met up to go together. Unfortunately, her Mom passed in September with LBD. :cry:

It's been a long day and my head is going in circles. I need to learn how to let things go . It's difficult for me but I am going to try and go to bed...

diane

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Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Wed Nov 15, 2006 10:40 pm
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Hi Diane,
Thank you for sharing your thoughts on the lecture that you attended, I am so excited to hear yet again how they are now using pet scans for this disease, when I know just a yr ago they weren't at that time it was only for research so in my mind many people will be getting the correct DX perhaps before they would have the conventional way they have been DX'ing people all along.
Isn't it nice to meet with someone that actually can share their experiences with you and you to her, it makes us feel not so alone with this disease.


Thu Nov 16, 2006 5:09 pm

Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post Lecture
Hi Irene,
From what I got from the doctor who is the chief of neurology at Mass. General Hospital, which is the medical hospital for Harvard, they are pretty well versed on LBD. That is a good sign.
Since I lost my notes... :oops: I'm not 100% sure on this one, but he also spoke of another diagnostic scan; I believe it was called a PEG scan..have you ever heard of this one?
I think he also said that what sticks to the lewy bodys during the scan is "glucose". I am concerned about having Mom take the scan. I am just plain confused. I do have an appointment with the neurologist, not this one, but one at Beth Israel/Deaconness in Boston...in January, I believe the 12th. So, I have time to think about how I will handle it. Don't forget Mom doesn't know what she has, except for a problem with her "processor" from the tiny, tiny strokes...so, it's a big decision of how far I want to go with this, because she will know that she is not doing well on the testing and that will upset her. Five years ago when she was tested she did pretty well and she was pleased as punch. Oh, I have time to think about it. :wink:
Hope you are enjoying the warm weather, it is miserable up here...rain, rain and more rain...but it's mild. No snow yet!!!!
Hugs,
Diane

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Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Thu Nov 16, 2006 9:55 pm
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Joined: Sat Oct 28, 2006 5:34 pm
Posts: 40
Location: Ontario Canada
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I most assuredly wish the doctors here in Canada could have attended that lecture. They don't appear too enlightened here.
Dad had a consultation with a spanking new gereontologist yesterday. When I tried to connect Dad's visual, spatial and mobility issues with his declining cognitive abilities and pointed her in the direction of LBD I got a frozen look and the amonition that Dad's most recent CT scan "didn't show any abnormalities" and that she would be treating Dad for dementia. DUH - even I know that LBD won't show up on a CT scan.So now I've had a GP and two greontologists refuse to even discuss the possibility of LBD. Treating someone for "dementia" is like treating someone for "asthma". Both are simply SYMPTOMS of an underlying condition. But what do I know....
Hopefully in the future LBD will be as aggressively researched and funded as Alzheimer's is currently.
Until then I can only continue to learn and be enlightened by the people who REALLY know what living with LBD is all about - YOU
Many thanks
Fins

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"Im pedalling as fast as I can!"


Fri Nov 17, 2006 11:24 am
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Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
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Dear Fins,
That is horrible. I can't believe that they are so rude to you. What the heck is wrong with them! How do you keep your patience? I would lose it for sure. :evil:
Do you have a copy of the CD on LB? Maybe if you could get one of these genius doctors to watch it, maybe it would turn on a light for them. Just an idea.
People complain about our medicine in the states; but, this should be a lesson for them. I wouldn't give up until I found one who KNEW!!
Sorry,
diane

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Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Fri Nov 17, 2006 11:42 am
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Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
Post 
Hi Diane,
I don't think you can hide this disease from her for very much longer. Deep down she probably knows something is wrong. It's like having to tell someone they have Cancer. It's terrible, but eventually must accept it and enjoy what life is left. Sadly, the upside is that they forget they are sick. My Mom denied having a problem but as time has passed, we can say to people "she has a dementing illness", and she looks up and says "do I"? So it doesn't upset her now. In the beginning I think my Mom was scared, because she suspected something was wrong. But she got along for awhile faking it and giving general/generic answers to questions. :(

To Fins,
Nothing would surprise me when it comes to physicians. They have BIG egos and i believe would deny a diagnosis rather that admit ignorance. :x
Keep trying, you will find someone who will listen. I found a Doc who listens, but he's not very knowledgeable about the illness. It's a compromise because he listens to my suggestions instead of denying she is ill. It works for us.

Good luck to all,
Sallyann


Fri Nov 17, 2006 4:42 pm
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