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 PET SCANS 
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Joined: Fri Jul 21, 2006 1:05 pm
Posts: 51
Location: Houston, TX
Post PET SCANS
Great news! They finally got my mother scheduled for a PET Scan through the Baylor College of Medicine. The PET Scan is supposed to be able to identify Lewy Bodies if present. I don't know why exactly that it took three weeks to get it scheduled. I think it had to do with Medicare paying for it! So, along with all the other testing that has been done, we may be getting a DX soon. Wish us luck 8) !
Jennifer


Wed Oct 25, 2006 9:48 am
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Hi Jennifer,
This is great news and yes delay was probably having to do with $$$$ but it is going to happen and I am glad and I do wish you all the luck with it and Please come back and let us know the results! :D


Wed Oct 25, 2006 10:22 am

Joined: Tue Sep 26, 2006 5:13 pm
Posts: 18
Post pet
congrat!! I will be waiting to see how it goes


Fri Oct 27, 2006 7:54 pm
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Joined: Fri Oct 27, 2006 8:07 pm
Posts: 54
Location: New Hampshire
Post Scan
My mother had this scan done, it is remarkable and they can see LBD on it. Dr. showed it to myself and my sister and we couldn't believe it. It was nice to have a definite answer. Our mother is legally blind so some of the memory tests could not be done on her, this really helps with the diagnosis.


Fri Oct 27, 2006 8:26 pm
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Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
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Hi All,
It is interesting to know there is a test available. I had no idea a PET would show Lewy Bodies. Although it is too late for my Mom. I wonder about the test for myself. My Mom started with symptoms in her mid 60's, I am early 50's, but I really worry ahout heredity . Does anyone know how much this is a factor?
Sallyann


Sat Oct 28, 2006 7:42 pm
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Joined: Fri Oct 27, 2006 8:07 pm
Posts: 54
Location: New Hampshire
Post Heredity
Doctors have told my sister and I that genetics can play a factor but lifestyle changes can help with this. Being active, socializing, diet, antioxidant vitamins, lowering your cholesterol can all play a factor in the disease. I too worry about it, my Father died 3 years ago from Alzheimers and now my Mother has LBD.... talk about your double whammy.........My sister and I pump up with all kinds of vitamins etc. We also try to stay active. As my sister always says "If you dont use it you lose it".....


Sun Oct 29, 2006 8:41 am
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Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
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Thanks for your reply, I too think alot is genetics. My LO's great grandmother was sent to an "asylum", in the late 1800's. she had a great aunt with some similar symptoms. But those are the only family members who had some sort of dementia. My Mom played bridge, worked any kind of word game, cross word etc. I am just worried that there is nothing we can do to escape this terrible illness. I pray for a cure, or at least something that would help with symptoms. I could handle a wheel chair, but not losing my mind. On the other hand, I probably wouldn't even know I was demented, if it's happy and no worries, maybe I could do that :wink:


Sun Oct 29, 2006 2:31 pm
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Joined: Fri Oct 27, 2006 8:07 pm
Posts: 54
Location: New Hampshire
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Yesterday Mom was confused, disoriented and worried because she cant see. She has had Macular degeneration (legally blind) for the last 15-20 years and could never see well. Keeps insisting it is getting worse, but in observing her, she seems to be seeing the same. Macular is an eye disease that makes it hard to look through a donut hole. She also has a cataract in one eye, we had the left on removed but it did not change her vision, and do not want to put her through that again, it was horrible. I feel so terrible, at first I was stupidly repeating over and over that she has been legally blind for years, keep forgetting not to do that, guess I want to make it all better but I can't. Today she was confused when she was awake, had a hard time all day keeping her from falling asleep, really really lethargic and unresponsive. Had to call her 4-5 times to get her to respond. Has anyone seen this problem. I took her temperature, blood sugars etc. everything is normal. All of a sudden at 3pm she got out of her recliner to go to the bathroom and she said "I have been taking a long nap". Seems more alert now, but started complaining about her eyes asap. I really have no idea what to say to her, makes me want to cry. Oh well have rambled enough. Thanks for listening whoever is reading this.......I really hate this disease :x


Sun Oct 29, 2006 6:47 pm
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Hi,
You and everyone else that deals with LBD hates it too!
Is it possible that she is getting a UTI sometimes they get very confused when an infection is brewing in their system, Just a suggestion! :)


Sun Oct 29, 2006 8:28 pm

Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
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I am sorrry your family is having to deal with this. Except for the vision problems, your Mom sounds alot like mine. What is frustrating is that the doctor has no answers for us. He is not that familiar with the illness. I don't think many physicians are. Does your Mom's Dr. have any suggestions about the fatigue? My Mom has been getting increasingly tired the last couple of months. She falls asleep during the day for hours at a time. Most of the time she's not aware that she slept. She is very shakey and unstable on her feet. I woke up during the night and went to check on her (don't know why), but I found her in the bathroom leaning on the sliding shower door, she came close to falling in. Falling is my biggest worry. I worry about what would have happend if I hadn't woken up. I worry that I am not going to be there every time she gets in an unsafe situation. :(
Keep posting. It helps to know what others are going through, and you may get some suggestions. For instance, I have heard that very bright lights help with the vision of people with Macular Degeneration. If she is able to do anything that she needs vision for, even a little improvement would be helpful.


Sun Oct 29, 2006 8:37 pm
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Joined: Fri Oct 27, 2006 8:07 pm
Posts: 54
Location: New Hampshire
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Thanks Irene and sallyann - I just really needed to vent glad someone was listening. Moms Dr. doesnt have anything to suggest at this point, just keeps telling me to put her in a nursing home. No way we will do that where mom is still aware of her family and surroundings. Dad left her some money so we will use it up with private pay care round the clock if we have too. Sallyann, your moms symptoms are very similar to my mom. Today she says her heels are numb, very shaky and unstable. We had to get help at night (mom lives in in-law attached to our house). Woke up one morning, turned on monitor and heard her yelling. She was on the floor and had been there for 2 hours. We immediately got an agency in, from 7pm to 7am so I can sleep. I do the rest of her care all day so I really needed the time for the rest of the family, especially my poor husband. He has been wonderful the last 5 years since mom and dad moved in. Thanks for the suggestion Irene. Immediately thought of the same thing (UTI) but test came back negative. Well gotta go. Thanks again. Everyone hang in there. Irene you are a sweetheart, I am sorry about your husband, I miss my dad too.


Mon Oct 30, 2006 11:00 am
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Dear Sallyanne,
Caregiver is a hugh thing to take on and you have done that and you have your mind set that you are going to take care of your Mother and I think that is wonderful and if somewhere down the line you can't do it anymore you will know, no need for someone else to tell you. I think you can do it , I did and it was a big commitment but the one thing I do ask of you is to take care of YOU too, because you can't take good care of someone if you let yourself go, take time for you and breaks away from it all with no guilt! You say there is a little bit of money, get it out of her name and use it sparingly, this disease can get very rough and you don't know what the future holds yet. I wish you well and you are a wonderful daughter, your Mother is so lucky to have you !


Mon Oct 30, 2006 6:41 pm

Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
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Thank you Irene :)
Sallyann


Tue Oct 31, 2006 6:26 pm
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Joined: Fri Jul 21, 2006 1:05 pm
Posts: 51
Location: Houston, TX
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Hello All,

I don't know why it has taken so long, but I finally rec'd a call from the Geriatric Neurologist this afternoon. They set an appt. for 11-21 for us to go in and go over the results of the psych tests and the PET scan. I'll let yall know about the Lewy Bodies in the PET scan after the appt.

Jennifer


Thu Nov 09, 2006 3:48 pm
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Joined: Fri Oct 27, 2006 8:07 pm
Posts: 54
Location: New Hampshire
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Good luck Jennifer. Even if it does show definite LBD, at least you have an answer and can go from there. Stay in touch with the boards, I have had so many questions answered in the last few weeks from some very knowledgeable people. Its just unfortunate that we are all going through this. I have found more support in the last few weeks than I have had in the last 4 years. My prayers are with you all.


Thu Nov 09, 2006 6:49 pm
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