Posts Tagged ‘Lewy’

It All Begins with Awareness…

Awareness builds knowledge.
Knowledge builds power.
Power builds research.
Research builds treatment.
Treatment builds hope.

Awareness is our beacon. It’s how Lewy body dementia will come out of the shadows and into the public eye.

The Lewy Body Dementia Association is committed to increasing awareness about LBD 365 days a year. This year, October 10-16 will truly be A Week To Remember as LBD families are Standing Strong with LBDA to raise LBD awareness and support throughout the country.

Participate by selecting at least ONE activity from any of the three links below. Together, we are…

Increasing Knowledge: Help to advance the cause by getting involved in community-based awareness efforts. Let’s make Lewy body dementia a household word!

Sharing Experience: No one should have to face LBD alone. Participate in one of the many ways LBD families connect to share their personal experiences of living with LBD.

Building Hope: Your much-needed support of LBDA’s mission means new hope for the 1.3 million families who are living with this devastating disease.

Join us or learn more about how you can Stand Strong with the 1.3 million families affected by Lewy body dementia.

Click here for LBD Awareness Week Resources you can download, including our LBD Awareness Kit – filled with ideas and tips on how YOU can help make October 10-16, 2010 A Week To Remember.

If you have questions about raising LBD awareness in your community,
contact us at awareness@lbda.org or 404-935-6444, ext. 104


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I received this email from the LBDA:

A Week to Remember

Dear Friend,
Awareness is our beacon. It’s how Lewy Body Dementia will come out of the shadows and into the public eye.

  • Awareness for the spouse whose “happily ever after” has been stolen away by LBD.
  • Awareness for the primary care doctor whose patient would benefit from referral to a specialist for a specific diagnosis.
  • Awareness for the caregiver that she is not alone.

Although we remain committed to increasing awareness about LBD 365 days a year, October 10-16 will truly be A Week To Remember, as the LBDA Family comes together to raise awareness and support across the country.
We invite you to join us and countless others who will be participating in grassroots efforts like these, to name just a few:

Watch for more information on our website, and in e-mails like this one, in the weeks and months to come. To learn more about how you can stand strong with the 1.3 million families affected by Lewy body dementia, please contact us at awareness@lbda.org. We hope you will join us in making this A Week To Remember.

Remember, it all begins with Awareness.

Angela Herron
President, LBDA Board of Directors
Together, we are Increasing Knowledge, Sharing Experience, Building Hope.

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Its been a while since I’ve posted regularly. Life has been busy with the addition of a little one. Our baby girl is doing so well, gaining weight and amazing us every day. She’s just the love of all of our lives and brings us so much joy. Dad does well with her and I truly think having a baby around has done wonders for him. I love watching him with her.

Dad is doing pretty well these days. He still has daily hallucinations but they’re not as terrifying- mostly annoying to him. He’s often chasing them out of the house or yelling at them. Despite his daily visitors throughout the day and his usual Lewy quirks and ticks, Dad is much better these days. We don’t know how long his “good” streak will last but it’s nice to see Dad back in action. He is certainly more active and wants to stay busy. These days, he’s getting up early, showered and dressed so he can go out. He’s all about going out every day. He often gets on Mom’s case that she’s not getting dressed quickly enough. He always wants to go out for lunch or dinner and run errands. If Mom needs a day to stay at home to do bills and paperwork, Dad gets a little miffed. He expects to go out every day. When I’m there, I take him out as much as I can.

Right now, my Husband, daughter and I are in Australia for a little while. Mom seems to be doing okay on her own with Dad. Her brother is there visiting for a few weeks so that’s great she has some company. My sister will be heading home shortly, too, for the summer and then we’ll be back there in a bit.

I’ll try to update more regularly now that things are settling down.

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I realize Easter was about three weeks ago but I still want to post a few pictures from the day. Here’s Grandpa, Grandma and Baby.

We had a lovely day relaxing at home and enjoyed a delicious home cooked family dinner together. I hope everyone’s Easter/Passover was just as nice.

Dad has been doing well and I’ll write a separate post about that later. He’s enjoying his granddaughter and he really seems to do a lot better with her around. Dad likes singing to Baby while rocking her in his recliner. He’s always commenting on what a beautiful baby she is. I just love it. I’m so glad Dad is able to love Baby, remember Baby and enjoy her. Their time together, I will always cherish. I only wish he didn’t have this disease and Baby could grow up knowing my real Dad for a long time, not Lewy Dad.

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With the Christmas season upon us, the fam has begun to decorate the house for the holidays. We’ve strung up some lights and decorated the tree but not without Scrooge, aka Dad, trying to put the kibosh on our Christmas spirit.

Since December 1st, we’ve been prepping Dad that Christmas is coming and we’ll be decorating soon. We talked about what he may want for Christmas (he has no ideas) and that Sister will be here to celebrate with us, too. We marked Christmas on the calendar and have Dad count the number of days until the big day. With all that, he still can’t seem to comprehend that Christmas is around the corner. It could be an indication that Lewy is taking greater control over Dad’s mind and body or he’s just heavily medicated right now (due to the hallucinations) making it difficult for Dad to understand.

When there is a Christmas movie on TV, he immediately demands us to turn it off… “It’s too early. This can’t be right.” When we’re in the car and the radio plays Christmas music, he wants it shut off. I don’t think it’s so much that Dad isn’t in the Christmas spirit, it’s that Christmas is a change from his normal everyday routine. With the advancement of Lewy taking over (or the medication tinkering), he can’t handle change as well as he once could. He has trouble comprehending that Christmas is less than 3 weeks away and I see that as a sign in the breakdown of his cognitive & reasoning skills.

With all that in mind, we decided to gently ease in to the Christmas decorations. We brought out the Christmas wreath a few days ago and let it sit around the house before hanging so Dad could get used to it. He immediately wanted us to put it away- “it wasn’t time.” Yesterday, we started decorating for the season and Dad had a bit of a tizzy that we were putting up the Christmas tree. We tried to get him to help hang the ornaments, but he didn’t want any part in it. He really doesn’t want to help with anything anymore so I guess we weren’t surprised that he could care less about decorating the tree.

I’ll probably try taking Dad out this week to do some Christmas shopping. We’ll see how that goes. He likes getting out of the house so maybe it won’t be so bad although a decorated mall could possibly disorient him. Maybe I’ll start small with individual store visits before heading to any major shopping centers. Just maybe, he’ll come around slowly but surely as he gets acclimated to the idea of Christmas, or rather, change.

UPDATE: As usual, after the change in his routine, Dad has adjusted and is enjoying the tree and wreath. We even went Christmas shopping yesterday and Dad helped pick out some presents for Mom.

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Just a quick update to let everyone know the past few days for Dad have been wonderful. On Tuesday he was exceptional and it was almost like there was no horrible Lewy messing with his body. Mom and Dad were even able to head out to the movies and for dinner. This disease is such a crazy rollercoaster- one day it’s just awful, the next day it’s as if nothing is wrong. Hopefully Dad can stay better for a while because things have certainly been rather difficult lately.

In any case, we wish everyone a happy and healthy Thanksgiving. Cheers!

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Husband and I are heading out to California tomorrow morning and we’ll be there until after the new year. I know Mom is certainly looking forward to our return and I’m happy to get out there to help her. Things have been very stressful for her lately. She definitely needs some respite and assistance as Dad has been quite the handful, especially today. He’s been incredibly difficult to manage with his raving hallucinations- he’s completely out of touch with reality. There’s no coaxing him back to the real world- he just lives in a world terrorized by his hallucinations. It’s crazy how this Lewy roller coaster works because yesterday he had such a good day and today you would think he needed to be in the hospital or something.

There’s a lot to be done while we’re out there and hopefully we can make some progress on getting things sorted.

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