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 Hi from Victorville, CA 
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Hi from Victorville, CA
My name is Terri and I live in Victorville. My spouse has dementia. Seen two neurologists in the area. The first one was a waste of time. The second one took more care but then admitted that there were no real memory specialists in this area, they were all basically general neurologists. He was familiar with prescription sensitivities and had heard of LBD but that's about it. He did order more tests, e.g. B12 and thyroid levels, then referred us to UCLA. We go on June 11. My lo hasn't been officially diagnosed with LBD, however, everything I've read so far fits him to a tee. To me, it explains why I have such a hard time describing what's been going on the past 3-4 years. My lo is very healthy otherwise and never has been a doctor person. He's 76 years old now and only since about 2006 has he been seeing my primary care physician. He was given one pill for cholesterol. A little more than a year ago, he started Aricept. Couldn't take that. Then started the namenda. Just recently, he started taking a pill for enlarged prostate. That's it, for a man that's 76 years old. Over the years, he has resisted all my efforts to find out what's going on with him. Finally, he agreed to see a neurologist but refused a CAT scan. Just last August, he had his first CAT scan which showed age-related brain atrophy. The doctor (the first one) said keep taking the namenda and he'd see us in a year. I tried to get feedback from him as to what to do, what to expect, etc. and he gave me a brochure. He never ordered further tests. As I watch my husband get worse, I can only look forward to June 11 with hopes that we can finally get some real answers and a treatment plan that will address some of his more crippling symptoms, such as the depression, and give us some direction as to how to approach the future. My frustration comes from having this be my battle. He participates very little in this battle to help himself. I'm so glad I found this LBDA website.

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Fri May 11, 2012 9:09 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hi from Victorville, CA
Welcome to the forum, Terri! Now you have someone with whom to share your concerns--we've been through what you are going through. I hope you will keep looking for a neurologist who understands the nature of your LO's disease and also understands the turmoil such a disease creates. Telling you to 'come back in a year' isn't very helpful, is it? Some of these physicians feel helpless and uncomfortable with dementia disorders, I think.

On the other hand, there is no simple answer to treatment. My husband takes Sinemet for the PD symptoms and Exelon patch for dementia. It helped initially but, after five years, we have no idea if it's helping now. Seroquel has been necessary, largely to combat the effects of the Sinemet. There are probably no LBD treatments that do not involve some trade-offs. It's a balancing act that will probably require frequent 'tweaking'. Hence the need for a neurologist experienced with LBD. Hope you find one!

Even with the best of care, LBD is a heartbreaking disease. Get as much support as you can via support groups, forums, family. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri May 11, 2012 9:44 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Hi from Victorville, CA
Welcome, Terri. Sorry for you need to be here, but very glad you found us. I hope you find this site as useful as I have.

My husband had an obvious meltdown in June (2003) and was diagnosed with "confusion" then "dementia," and was prescribed a walker. That was it. It wasn't until he got to Mayo Clinic in Oct that we had an idea of what was going on, information on what to expect, and a treatment plan. I sincerely hope that UCLA can do for you what Mayo did for us! It can make a world of difference.

It may be that hubby is being stubborn in not participating in his own care. It may also be that if he were not cognitively impaired he could listen to reason and cooperate with you better, in spite of an anti-doctor history. In other words, it may be good ol' Lewy getting in the way of the behavior you would like from him. I've had to remind myself many, many times, It is not dear Coy who is doing this, it is Lewy! That has become a kind of mantra for the bad days.

Wishing you all the best for June 11!

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


Fri May 11, 2012 9:48 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hi from Victorville, CA
Terri,
Who is your LO seeing at UCLA? It's a good place to go in SoCal.
Robin


Fri May 11, 2012 11:58 am
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: Hi from Victorville, CA
Teri...welcome! We are all here to listen to each other. I agree whole heartedly with what was just said by others to you.....Lewy is a horrible companion to have. Early on you have good days when you think---whew it is getting better! Then wham, it changes. The medication reacts so different for every patient. I do hope you get a doctor that truly understands. My husband takes Stalevo and Sinemet for the Parkinsons issues, and now Seroquel to help him sleep peacefully at night. The cognitive medications (Exelon, Namenda) made his cognition worse and made the Parkinson's worse. He is probably in the late mid-stage. You have found a great group, and you will learn alot from everyone, I have. Welcome. Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Fri May 11, 2012 12:55 pm
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Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: Hi from Victorville, CA
HI Teri. Welcome. Hope you link up with some helpful folks at UCLA. . I'm glad your LO has you as an advocate. Hope you find help and support here.

_________________
Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.


Fri May 11, 2012 5:51 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Hi from Victorville, CA
Robin, according to the paperwork I received, we will be seeing Dr. Sarah Kremen at the Memory Disorders Clinic. I e-mailed excerpts of the journal I've been keeping since January, 2012 and actually received a reply of thanks, very helpful. That is good news already. Their willingness to engage as opposed to assuming I don't know anything. I'm just sorry we live so far away from there. Moving closer is out of the question, at least for now. Thanks to everyone for the kind comments. My husband and I have always had each other, sharing interests and everything, doing all on our own. I'm seeing first hand the results of losing track of work friends. I'm glad I found this forum too.

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Sat May 12, 2012 5:43 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Hi from Victorville, CA
Terri, you have come to the right place. There are many of us here in various caregiving stages of LBD.
It sounds like a good start if the UCLA doc is welcoming your input.
My John has a wonderful LBD specialist at UNC who treats me as John's caregiver while he takes care of John. He was the 12th doctor we saw on our journey to get diagnosed, then get the right clinician who knew what he was doing with this disease. Do not assume that a good diagnostician still knows how to address LBD. Ours (Doctor Number 11) most certainly did not know how to treat it.
It sounds like you have already done a lot of homework, which bodes well for your husband and for yourself as his caregiver. A persistent and positive attitude will serve you well in this journey. The right medical team will be what you need next.
John was given an antidepressant, Cymbalta, before we even knew about LBD. It did help him and he continues to take it today, especially since he had peripheral neuropathy in his feet and it treats that as well. Every patient is different, but it is appropriate to assume that the right antidepressant might be helpful. And John takes both Namenda and the Exelon patch, so that is not unusual either if cognitive symptoms are the most pronounced.
Prayers to you!
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sat May 12, 2012 10:50 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Hi from Victorville, CA
Pat, I'm actually reading your book now. The first book I read was Dignifying Dementia by Elizabeth Tierney. That's when I first learned of LBD and the symptoms she described were on point with my husband John's. I had been tearing my hair out trying to explain what was happening with John but none of it made much sense and everyone just assumed Alzheimers. I bless a friend for giving me the book as I hadn't thought to read other's stories about their journeys with this insidious disease. I have also read Caregiver's Guide to Lewy Body Dementia by by Helen Buell Whitworth and James A. Whitworth. Each book, including yours, has been helpful. John and I have five sons between us, the youngest is 36, the oldest is 48. We have been married for 22 years. His are the two oldest. I'm 64 and he's 76. All the boys have always gotten along, mine cherish him and his also love me. The only one I've had issues with is the oldest. He hasn't been mean or anything, but when you described your concerns with John David, they rang familiar. Four of the boys are close enough to visit at least once a month without hardship. Mine do. His youngest is here when I call him. The oldest is another story. Getting his to at least call more often is like pulling teeth. I wonder why that's so darned hard. Then I had to consider that perhaps the oldest, mainly, just can't deal. OK, I could go on and on, but I'll stop now. Thank you for sharing your story and for taking the time to respond.

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Sun May 13, 2012 9:16 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hi from Victorville, CA
Terri,
Welcome to the LBDA forums amd I certainly hope in June you will have some answers and a direction as to how you will proceed with the illness. I am glad you found the forums.

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Irene Selak


Mon May 14, 2012 6:06 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Hi from Victorville, CA
Terri here,
I'm pretty encouraged. We actually talked about LBD today. John wondered what was the difference between Alzheimer's and LBD. I pulled up some stuff off the internet and printed out a couple articles that we read together. He wept some, read some, wept some more, then we really talked. A lot of what he read, he admitted to experiencing. Where he wasn't even interested in discussing anything about it before, he now agrees that a support group might be a good idea. What a leap, love it. I know there are a couple here in the high desert and after we see the folks at UCLA and get a diagnosis, or at least some productive opinions, I will get us into one. We also discussed, though briefly, the future and the need to make some plans for his comfort and safety in the house, getting things done before it's needed. This is a start. I'm hopeful. I really need for him to participate more but if he won't, I'm hoping that what I learn will get us through. Today I think he may choose to get more involved.
God Bless and thanks for the forum.

_________________
Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Sat Jun 02, 2012 10:44 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Hi from Victorville, CA
Terri, this is so encouraging! I am happy for you. Remember that you have many more good times together and that the journey has purpose that you have yet to discover. Just the sharing With your John is such progress, isn't it?
I pray that you will get good support at UCLA and can make adjustments in your home to create comfort and peace.
Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sat Jun 02, 2012 11:47 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hi from Victorville, CA
Thanks for sharing this very positive development. I hope this can be maintained.


Sun Jun 03, 2012 12:13 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Hi from Victorville, CA
I think this can be a very productive and helpful, if painful, breakthrough. Now it is both of you against Lewy!

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


Sun Jun 03, 2012 12:17 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Hi from Victorville, CA
That's great Terri! I hope that together you can tackle the stuff that needs to be done now so your burden later may be lighter. 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.


Sun Jun 03, 2012 9:47 am
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