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 hello.. 
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Joined: Mon Feb 15, 2010 10:52 am
Posts: 4
Location: Toronto, ON
Post hello..
I am just a new member,and finally I found a site that
hopefully can help us in our question.My friend are diagnose with lewy body dementia,but he showing more of Parkinson disease symptoms,his cognitive function are doing pretty well nowadays he is still mobile and trying to be as independent as he can,his most worried now is his voice he keep asking me if he's going to loose his voice and for a support I just told him his voice will just be like that but he will never loose it.He is always seems so tired the whole day inspite of my encouragement to exercise and keep moving.He was diagnose since 2004 and was put in a nursing for a year now.Does his condition progressing now and what can I do to help and encourage him and lift up his spirit.

Thank you so much for the information and help you can give me.[/b]


Mon Feb 15, 2010 12:22 pm
Profile YIM
Site Admin

Joined: Sat Mar 24, 2007 3:23 pm
Posts: 5
Location: Panaca, NV
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If you friend is able and interested, we have a private "Support group for those with early LBD." Only the participants can post or read the posts. It is just that, a private area for patients. I would be honored to assist in any way possible.

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Jim Manner


Mon Feb 15, 2010 12:30 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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fherly,

You are a good friend! I think you have a great idea to help your friend make connections with others.

In addition to joining the patient-only area of the Forum and posting on behalf of your friend, you might want to strike up a correspondence with "pubpanda." She was recently diagnosed with LBD. See:
http://community.lbda.org/forum/viewtopic.php?t=2016

And check out the blog of David Thomas, a psychiatrist (now retired) who has been diagnosed with LBD and/or FTD. See: http://knittingdoc.wordpress.com/

Fatigue can be part of LBD.

Robin


Mon Feb 15, 2010 12:36 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Welcome!
So glad you found the forums to help assist your friend. As mentioned Fatigue and exhaustion seem to be very much a part of LBD, the smallest things seem to exhaust them.In our situation the PD end of the LBD was much more troblesome but the memory end but that too did catch up in time!
If you have specific questions try and post in the areas that fit your question the best, this way more eyes see it and more offers of help.
Good Luck and I hope the forums are helpful for you and your friend!

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Irene Selak


Mon Feb 15, 2010 1:29 pm
Profile WWW

Joined: Mon Feb 15, 2010 10:52 am
Posts: 4
Location: Toronto, ON
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Greetings of peace to all! Thank you so much Mr.Jim manner,Robin and Irene Selak for a very warm response.As you know I can only use comp.and check my mail every weekend for my workplace is far from here in Toronto where I spend my weekend and visit my friend in the nursing home to give you a short stories I am a former student just finish my short course as a Personal Support Worker and I was completing my clinical hours of duty to the nursing home where I met my friend.I am deeply moved by his stories his family which he expected to be there by his side in times he needed it most wasn't there unfortunately he was so alone and depressed and as a caregiver our duties is to give compassionate care but for me I want to give more than that I told him I will help to the best of my abilities and knowledge I did a lot of research about his case and give it to him and he was so thankful and so much aware now of his condition.I told him I've found your site and join and he ask me a lot of question to ask.Internet is not available for resident use in the nursing home,so I am really the only person he was depending on he had one relative who had this Power of Attorney over him but seems doesn't care at all.My heart was deeply touched and I thank God for finding your site to share my stories and to connect with people whom I think will understand and give more information and updates.

Thank you very much for reading my stories and I just read pubpandas stories and david it was very interesting and helpful information.

As of now my friend wants to know if theres any other way to connect with you without using the internet so he will personnally receive and ask some question.How long is the lifespan of an LBD patient are they going to be bedridden for a long time and what is the sign and symptoms if the LBD is progressing already.

Once again thank you and
GOD BLESS YOU ALL.


Sat Feb 20, 2010 2:33 am
Profile YIM

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Greetings to you too!
Your friend can call the helpline at the LBDA with his questions and concerns and someone wouldl be happy to help.
800-539-9767

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Irene Selak


Sat Feb 20, 2010 10:38 am
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Joined: Mon Feb 15, 2010 10:52 am
Posts: 4
Location: Toronto, ON
Post 
Thank you so much Irene,I will try to encourage my friend to call the no. you gave me.He was having a hard time to speak nowadays bec.of his very soft and low voice.I printed all the information you guys gave me and will handed it to him if you could answer my question I will print it and give it to him.

Once again thank you for the response I really appreciate your quick response for time is really precious with me when I am here in Toronto for only weekend and go back to my workplace on Sun.or Mon.I only have Sat. and Sun. to visit my friend and do some stuff for myself.

Thank's again hope for more response and help.


Sat Feb 20, 2010 11:12 am
Profile YIM

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
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Welcome to a place with wonderful members who can give you and your friend support as well as advice. I hope you visit often! Lynn


Sat Feb 20, 2010 9:37 pm
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