Posts Tagged ‘Living with Lewy Body’

Dementia Chats Recording on Wandering & Driving

Dementia Chats Recording –

August 12th, 2014

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Today we discussed the topic of wandering.  What does this word mean do our experts living with the disease even like the word and agree with the subjective definition.  What about other words? How would they define a crisis situation vs. a care partners view and why is it important to understand the difference. We also got into driving once again.

I personally, have never not walked away from a session of Dementia Chats without learning something new or changing my perception on a topic.  I truly find this fascinating discussions. I hope you can join us for the next live Dementia Chats on August 26th, at the same time each 2nd and 4th Tuesday of the month – 3pm EST, 2pm CST, 1pm MST< 12pm PST and 8pm London time.

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Jan 28th, 2014 – Recorded Webinar


Click Above to Watch

Today we discussed with Harry Urban and Dene Dotson:

The importance of relationships and connecting

How To Tell what someone wants when they don’t speak

How other Peoples moods effect someone with dementia

How, when and why do you get someone to eat

How to re prioritize and balance life with dementia

Learn More About Dementia Chats

and View Other Past Shows

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Insights From Norrms on

Living With Lewy Body

Unspoken Words

By Norrms McNamara, in his own words

The shouting was getting louder and louder, the awful shouting, ringing in my ears, so many voices, no many unrepeatable words echoing around my mind. As I awoke a FACE appeared in the darkness of my bedroom, it hovered over me, sneering and foaming at the mouth, grinning with sickening intent of what was behind the eyes!! I screamed as loud as I could, fully conscious and fully understanding the fear that ran through my bones!!

Just another night in the Mc Namara household, Elaine held on to me tight until I had stopped shaking, stopped sweating and more so, stopped babbling on, making no sense at all to anyone else except me. As the morning dawns, I am up, no matter what time it is, no matter how early, just to make sure that my “Angel” gets some sleep at least, no matter how tired I am later on. Whilst I am still able to do this, I will, if it means that the love of my life gets a few hours more sleep it’s worth the while getting up so early.
The night terrors / HALLUCINATIONS AND ALL THAT Lewy Body’s brings means this is something that happens every night, without fail, sometimes as many as ten/fifteen times a night, sometimes as little as three, but always EVERY NIGHT! It stays with you for the rest of the day. Sometimes, during the day, I have no idea what’s real or not. Sometimes I believe I am still in a dreamlike state and I shout and act totally out of character.

And yet, sometimes, just sometimes, through this fog of deceit that envelopes our brain, our thinking and way of life I see in somebody else’s eyes that they also understand. It might be in a cafe, restaurant or even queuing in a shop, but just now and again when I have been loud or awkward, I spot a quick glance coming my way, and it’s not a glance of disdain or disgust, but a glance of warmth and empathy. UNSPOKEN WORDS can mean so much sometimes, so very much.

Norrms xxxxxxxxxxxxxxxxxxxxxx

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Love, Laughter and Lewy Body Dementia

Our Guests today are Mary McGrath who will speak to us about her journey with her husband who has Lewy Body Dementia

Mary McGrath and her husband Jim

and Angela Taylor with the Lewy Body Dementia Association

Angela Taylor with the Lewy Body Dementia Association

Today we will learn about:

  • What is Lewy Body Dementia?
  • Are certain demographics more likely to get this disease?
  • Real life examples of symptoms and how to cope with them as a Care Partner as well as a person with symptoms
  • Coping skills – Caring for yourself as well as the person with dementia
  • How and where to find support
  • How can the disease affect your relationships not only with your loved one with the disease but family, friends and coworkers.
  • finding balance in caring for someone with Lewy Body Dementia
  • Does early diagnosis help and if so how?
  • What type of treatment is available for those with Lewy Body?
  • Is the disease reversible?
  • How can you help spread awareness about Lewy Body Dementia?
  • Finding the good in Lewy Body Dementia
  • What should you do if you think you or a loved is having symptoms of the disease?
  • What resources are available for people dealing with Lewy Body Dementia?

Click on the white arrow in the black circle in the box below to listen to the show

Mary McGrath can be reached through her website


Angela Taylor can be reached at the Lewy Body Association at




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