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 Newly Diagnosed - Patient - 56 yrs - Male - Me 
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Newly Diagnosed - Patient - 56 yrs - Male - Me
Newly Diagnosed - Patient - 56 yrs - Male - Me

I was diagnosed March 23 at Mayo Clinic in MN by Dr. Boeve. I will be attending a seminar this April 4 at Mayo for caregivers with my wife. I was told I was very early in the progression. I think, I will be participating in the research study that was announced on March 22 for Mayo.

My introduction to Lewy was made on March 15 when a PET scan report indicated that Lewy Bodies might be something in my future. The first time I read the list of symptoms, I knew.

I have been on a long road of being in Limbo. I thought for a long time that I had MS. I had to stop working at the end of September 2010. I was Systems Analyst/Programmer. Cognitive problems made continuing working as a programmer impossible.

I seem to have been given an opportunity to plan for my progression. I hope to make a difference for those who will take care of me...and maybe for those who have yet to discover what the nightmare is that they have been fighting....like I have been.

I have been reading some of your forum entries and this seems like a place where I can find some help to understand what is and what will happen to me and those around me…

I so appreciate your efforts with your loved ones….

I haven’t decided yet...to completely remove the mask of being anonymous to some extent…

But, I am here, asking for help.

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Mar 30, 2011 1:25 am
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Joined: Tue Mar 08, 2011 12:34 am
Posts: 2
Location: Olympia, WA
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
I am so sorry to hear that your life has been altered by LBD. Thank you for sharing your story. My husband was diagnosed with LBD/Parkinsonism 16 months ago. His symptoms do not seem to be progressing rapidly, but they are definitely noticeable and life-altering. Anxiety, sleep interruption, and fatigue, as well as loss of executive reasoning, are some of our most plagueing problems right now. I would be interested in hearing a follow-up about the seminar on April 4, as well as your participation in the Mayo study. Best of luck to you - you will be in my thoughts and prayers. Thank you again for sharing....this support is so important.

Cheryl


Wed Mar 30, 2011 1:46 am
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Joined: Mon Mar 14, 2011 12:23 am
Posts: 15
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
I am new here too -caring for my Mom who is in the late stages of this disease. I am so glad you are being cared for by the experts at Mayo, and are able to be a part of the planning for your care. So much of this disease just kind of blindsided us and planning was not possible. For me as a caregiver one of the hardest parts of all this is being responsible for decisions that so greatly affect another's life - to be able to freely discuss things in advance I would think will ease the way for all of you. The greatest gift of LBD has been the gift of love- to be able to care for my Mom and have her receive it. I am glad you found this wonderful resource, it has eased my mind many times- both the support and practical advice. Welcome to the club none of us wanted to belong to, but never the less find shelter from the storm in.


Wed Mar 30, 2011 2:27 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
Welcome to the forums, BayouCajun. We'll be interested to hear how the seminar goes next week. My husband also participates in Mayo research and sees Brad Boeve. We attended one of their early patient/caregiver seminars and thought it extremely well done. They've had several years to tweak and improve it so I'll bet you'll find it even more useful. Our daughter and I found the caregiver sessions especially insightful.

Hang in there! You are in good hands.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Mar 30, 2011 8:55 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
Bayou,
Welcome, I do hope this can be a place of comfort for you and I wanted to let you know there is an area just for people here at the forums for People with LBD it is a private area and needs permissions to enter but there have been a few new posters so this might be a place for you and if so Please let me know I will clear you , the only non-LBD person that has access is me so it really is private ! You are welcome to post, ask anywhere here, I don't want to imply you have to use private area !!

Good Luck !

_________________
Irene Selak


Wed Mar 30, 2011 10:45 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
Cheryl,
I would also like to welcome you to the LBDA forums I don't think I have already, I am sorry for your need to seek out such a group and I do hope this can be a place of comfort and information on your journey with your Husband.
Visit often!

_________________
Irene Selak


Wed Mar 30, 2011 10:56 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
Irene,
Thanks for the welcome and your hard work on the forum.
Yes I would like to access the patient forum, if I need to send a PM or other let me know.

It would have been better to meet at a crawfish boil, but maybe I can send a video.

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Mar 30, 2011 11:50 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
Cheryl,
Cara,
Jeanne,

thanks for the welcome, I am looking to learn from what you are going through to help my wife and children and grandchildren with the future.

In thinking about all of this, I might be able to shed some light from the patient's view of the frustrations that the patient goes through living through the increasing limitations of this disease even before one knows what it is.

I have 3 adult children, none of who live close.
My oldest lives 3 hours away. She is 33 yrs and has 4 children of her own and 2 stepchildren….alot of sensory overload in one place.
My middle child is 10 hours away. She is 31 and two children.
My youngest is in Europe. He is 28 has no children and working a military support contract for two years. He left for Europe between the time that I had an indication of Lewy on a PET scan and the day that I got a diagnosis. This is troubling for me…to think it would be possible that I would not see him again for his job…and then because of me I might not recognize him the next time I might see him.

I have only known my present wife for six years, she is 48 yrs and we have no children together…this is troubling too…she has two children also who live 10 hours away…

Many things to think about…I am sure the seminar will get us started in that direction…

Then there is so much I want to do, so many memories that I want to leave with others…

and then there is money…there is none…so how to even navigate this mess and get anything done

so much to talk about, hopefully plenty of time to accomplish all of this…

okay, can't get to all of it today….all though I sure would like to try…. I am sure that is something caregivers have experienced…I have been in an increasing rush for years as my capabilities decreased….so that hasn't changed…it has increased

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Mar 30, 2011 12:21 pm
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
Welcome, BayouCajun,
I'm so sorry for your need to be here, and God Bless you on your journey. You have come to the right place, and will meet many, many people who will completely understand all you say, and will have had plenty of experience and advice for you. I am only a carer for my Dad here in Ireland, and we are way behind you on diagnosis etc, but have experienced firsthand some of the symptoms of this disease. Please God, there is much research being done every day, and maybe there will be a cure or at least meds to slow the progress of the disease. Visit here often, it is a lifesaver and a sanity saver!
Ger

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Wed Mar 30, 2011 12:40 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
BayouCajun:

You will notice as you browse this site that there are 2 of us from Louisiana, from Tangipahoa and St. Tammany Parishes.

Gotta be tough for you to read all of this stuff. Hopefully, you and the others on the private forum will still post on the open forum.


Wed Mar 30, 2011 1:24 pm
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Joined: Mon Mar 14, 2011 12:45 am
Posts: 17
Location: Birmingham, AL
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
I'm sorry to hear that you have this disease, but I'm glad you found this forum! My mom is 52 and looking at a probable LBD diagnosis. In the short time since I found this group, I have already learned so much. l am so sorry that you are in this position and wish that it wasn't the case, but since this is the circumstances, it will be interesting to see this through the patient's point of view. Many prayers for you and your family.

-Amanda


Wed Mar 30, 2011 2:06 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
Ger,
thanks for the welcome, oh how another trip to Europe is on my bucket list…I never made it to Ireland..would love to….I did spend a year in England…I lived off the Air Force Base in the little town of Somersham (latin for summer camp) in a old converted kitchen from the 1600's…and imparted that love of Europe to my son…who has spent the last 5 years in Europe and just committed to two more….

Gailshef,
I grew up in Jefferson and Terrebone Parishes….I spent half my adult life in St. Tammany when not in a whole bunch of other places….

I have to consider that I might wind up back in Louisiana before its all over…there is no other backup here, just me and my wife…the goal was to start all over after Katrina here and get another camp where we could catch crabs off the dock again back home….

Crawfish are real expensive in TN….haven't even checked on them this year….have to do that

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Mar 30, 2011 2:12 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
BayouCajun wrote:
Yes I would like to access the patient forum, if I need to send a PM or other let me know.
.


Just a soon as you are admitted you will be notified !

_________________
Irene Selak


Wed Mar 30, 2011 3:02 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
A reminder to our new members that once we get past the introductions and the chit chat starts I would prefer that you all start using areas other the welcome area, we have specific area's for specific questions or concerns and of course we have our respite area and now have the off topic area for the chit chat which I encourage everyone to use. Just makes it less confusing for the new people coming on board !

I like to keep this welcome area for our new members

_________________
Irene Selak


Wed Mar 30, 2011 3:10 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Newly Diagnosed - Patient - 56 yrs - Male - Me
Hi - welcome, and sorry for your diagnosis. We were just in Canjun Country last week! I hope you stop back here often, as there are many caring people here who are very willing to help you with info. and offer emotional support. Take care, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Mar 30, 2011 8:52 pm
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