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 another newbee 
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Joined: Tue Dec 02, 2008 1:57 pm
Posts: 3
Post another newbee
got married November 22, 2004 to the love of my life. We met late in life but he agreed that if he lives to be 80, we can have 20 years together. I never actually thought I could love someone as much as I love my husband. By June of 2005, we discovered he had prostate cancer and our life as we knew it came to an end in July with a radical prostatectomy. I noticed some odd behavior in my husband. He was a bank president who had lost his job and was losing a lot of his ability to think. I sent him to the doctor and she recommended he see a neurologist. The first neurologist - Dr. Newmark of Kelsey Seybold - concluded, after we had 15 minutes with a nurse practitioner, that my husband has "advanced Alzheimer's" and I should take the bank account away and find a nursing home and he will die in a year. We went to Baylor. Dr. Rountree was way too busy. After waiting 3 months for an appointment, she said "he's depressed, take him to a psychiatrist." The psychiatrist immediately started him on Exelon and Zoloft. I attended a reception with the Alzheimer's Association before one of the programs Dr. Doody gave. I met a woman to whom I told our story - between sobs - and she recommended Dr. Glen Smith at UTMB Galveston. Dr. Smith examined Dan thoroughly and got a pet scan and diagnosed Lewy Body Dementia. He started him on Namenda twica a day and it made a remarkable difference in my dear husband. At our last visit to Dr. Smith, I told him that Dan's tremors are starting in his left hand as well as his right. He is starting another medicine. I do not know the name. I have sent the prescription to the insurance company to be filled. We are real people with a real problem. After a perfectly blissful 8 month marriage, I feel like I have been dropped into Hell and there is no one there who can hear me cry.


Mon Dec 08, 2008 3:18 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 743
Location: LA
Post I believe
Icey, no one should cry alone. You will find shoulders here. After you get the sobs under control [and you will], you will learn and learn and learn. A former member remarked, "What a strange band of sisters we are". You will have better days, enjoy what you can. We care.

Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Mon Dec 08, 2008 3:56 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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Icey,

Thank you for introducing yourself. Unfortunately the grieving begins when we get the diagnosis -- while our loved ones are still alive.

Thanks for sharing the names of your husband's MDs -- good and bad.
Dr. Glen Smith at UTMB Galveston sounds like he's a partner to you and your husband in this journey.

Robin


Mon Dec 08, 2008 4:16 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Icey, We all wish we didn't have a reason to join this forum, but thank God it's here for us. You and your husband have to try to make the most of every day. You don't want to waste time wondering "Why", you'll never find an answer. Please know you have friends here who will understand every step of the way. Take care of your self. Gerry


Mon Dec 08, 2008 5:26 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Icey -- Glad you found us. I'd be adrift without the fine people on this forum. You might consider reading the book "A Life in the Balance" by Dr. Thomas Graboy. He is a well-known cardiologist who was diagnosed with Lewy body dementia and Parkinson's and writes about his experiences and feelings. The book provides tremendous insight into what the "patient" is experiencing. I thought of this book for you as he, too, was diagnosed after being married only briefly (he was a widower). What he has to say about his new wife's role in dealing with this unexpected diagnosis might be helpful to you.

As for the conflicting diagnoses before you got the correct one, that is a common experience shared by most of us. Jerome's first diagnosis was Alzheimer's (we call it AD), the second was vascular dementia (we DON'T call it VD :roll: ) then we finally got the correct diagnosis at the Mayo Clinic in Scottsdale, LBD. Frustrating, isn't it?

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Renata (and Jerome-in-Heaven)


Mon Dec 08, 2008 7:41 pm
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Joined: Fri May 11, 2007 12:54 pm
Posts: 115
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Dear Icey,

Welcome to the forum. I echo everyone's sentiments. I also wish you didn't have a need to join, but we are all here for you. You are in the right place to get the best information about this disease and to get help and hope to get you through your roughest days.

Love,
Joyce K


Tue Dec 09, 2008 10:34 am
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Joined: Thu Aug 30, 2007 6:15 pm
Posts: 231
Location: Charlotte, NC
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Tony and I had been married only 2 years (he was a widower) and he was diagnosed. Sometimes I think that he may have been sick when we married in 2002, but I did not know him "at the top of his game". This has been hard because I feel cheated...after a terrible marriage to an alcoholic I had found this really wonderful guy. I still tell him that he is the BEST and I do cherish every moment with him, even though I am loosing him day by day. He is stage 4+...now having trouble swallowing. I do get very sad but am hanging in there...one day at a time.

Nancy Salvadore


Tue Dec 09, 2008 1:23 pm
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