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Joined: Sat Mar 04, 2017 10:02 am
Posts: 35
Location: Near Fort Bragg,NC
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Post Re: Hi
I've been watching a series of videos on YouTube on a mother with LBD by her son

https://youtu.be/uCKcLUspjys

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Jim


Thu Apr 13, 2017 8:46 am
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Joined: Wed Apr 12, 2017 12:52 pm
Posts: 3
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Hey just thought I would reply and make my little self known in this section as I'm in SE TN, smoky mountains just outside Gatlinburg. Grandfather was just diagnosed and am taking it one day at a time, somtimes one second. Learning as I go and figured I needed a sounding board. Hi to everyone.


Fri Apr 14, 2017 9:47 am
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Joined: Sat Mar 25, 2017 1:32 am
Posts: 48
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Hi Cat and welcome,

I'm sorry about your grandfather. This will not be a easy path for either of you but I believe you will find a good deal of support here as well as some valuable information. Both from caregivers and patients themselves. Don't hesitate to make yourself heard, ask any and everything. There is so much to learn and so much yet to be understood. And I am sure you will have a wealth of valuable insights to share as well.

Oh, I feel a kind of regional kinship in that I lived most of my life in rural Eastern Kentucky, just next door to SE TN so to speak. Although I now live in Northern Kentucky, just outside of Cincinnati.

Again, welcome.

Randy


Fri Apr 14, 2017 10:47 am
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Joined: Mon Apr 17, 2017 3:00 pm
Posts: 6
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Kbriz - my husband went through the same thing with the swallowing. It was a nightmare. He couldn't swallow because he couldn't get his medication and he couldn't get his medication because he couldn't swallow. We'd spend two hours sitting on the edge of the bed trying to get little spoonfuls of applesauce down him with his crushed meds. FINALLY, they decided to put in a feeding tube, and what a turn around he had! We could now get his meds into him on time every time. He started eating again and even walking and talking. It gave him another 18 months of life at least. I don't even want to tell you about the horrible doctor at the ER that tried to talk me out of it because 'he has no quality of life.' (We were in the ER because he couldn't get his meds into him and was having seizures.) Thank heaven I have a girlfriend whose grandfather had PD and had a feeding tube for 8 years. She talked me into it, and like I said it was the best thing we could have done. (One added benefit: during the last months of his life when we were concerned about him aspirating anything he might vomit we could use the tube to provide all his nutrition.)
Best of everything to you. I'm sure you'll make the right decisions for yourself.


Mon Apr 17, 2017 4:10 pm
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Joined: Thu Jun 01, 2017 10:16 am
Posts: 5
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I'm here also. My partner is going through the diagnosis part. There aren't enough doctors in my area for this to happen very quickly. When I bring up this disease, some of his doctors look at me as if they've never heard of it.




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goldenslot


Thu Jun 01, 2017 10:24 am
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Joined: Wed Nov 01, 2017 11:10 am
Posts: 1
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Hi there. Just registered, but I have landed on LBDA forum topics numerous times over the past year. The information I've stumbled on has been invaluable. Hoping the forums become active again. It looks like they were unusable for awhile. I was unable to register until today.


Wed Nov 01, 2017 11:12 am
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Joined: Sat Mar 04, 2017 10:02 am
Posts: 35
Location: Near Fort Bragg,NC
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Hi Sara,

Welcome aboard. I visit occasionally, sometimes just forgetting and other times just not wanting too.

Is it a loved one or yourself who has LBD?

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Jim


Tue Nov 21, 2017 9:25 pm
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