Showing posts with label lewy bodies dementia. Show all posts
Showing posts with label lewy bodies dementia. Show all posts

Friday, November 18, 2016

Throwback Thursday! WEGO BLOG #HAWMC a "phost" from the past? (Christmas Eve 2014)

WEGO HEALTH Bloggers Challenge for 2016 - 'Throwback Thursday" One of my blogs from the past and why I picked it to go back and "share" it again.

 Many of you know how "messed, mixed, and flat horrid most of my year in 2014 was. This post explains a great deal of what went on, and why 2014 had an incredible start, I got to go to Washington DC for the Arthritis Foundations Annual Summit and although I had been down with a severe Lupus Flare, I had been to our Urgent Care the Friday before I was to leave and the doctor who knew a great deal about Lupus, since he suffers from it also, gave me enough corticosteroids for a horse I think (LOL, well not quite that much but enough to make me feel like I was brand new by the morning at 4AM I left for DFW Airport, for the flight to DC!

Little did I know what would happen that last day of the Summit March 26th, 2014. A horrendous nightmare of an event, that forevermore changed my entire life. There are days it still effects me, even now. So, here is the post from then:

Since the post is pretty long, rather than try to post all of it here, I decided to just post the URL (link) to it. That was a year of hell to say the least, then 2015, was not much better... I DID get the honor of being a "Platinum Ambassador" in 2015 BUT, did not get to attend the Summit that March, for reasons why in 2014, along with other issues that happened due to that "eventful" day. 

Then, thinking I would "start new" for 2016, only to become, someone without their own caretaker, that became a "caretaker" for my own Mom, who up until January 2016, had been in pretty good health. Little did we know what awaited us the first 6 months of this year...

Wednesday, October 19, 2016

Lewy Bodies Dementia - Robin Williams Taken by the horrid illness and closer to "home" this took my Mom within 6 month and she passed away June 9th, 2016

#LewyBodyDementia #LewyBody #Dementia #LewyWho



On August 11th, 2014, the world lost a wonderful beloved man. Robin Williams was an amazing actor, comedian, and philanthropist, who touched the hearts of millions with his wit and humor. However, Williams suffered from a degenerative disease that, after his death, was identified as Lewy Body Dementia.

Although Lewy Body Dementia is not a rare disease, it is still widely under diagnosed and many doctors and other medical professionals are still not familiar with it. It is often confused with Parkinson’s or Alzheimer’s disease due to the similarities of the symptoms. Doctors thought Robin Williams had Parkinson’s before an autopsy revealed the massive proliferation of Lewy bodies throughout his brain, one of the worst LBD pathologies the medical professionals had seen.

In an effort to raise awareness of Lewy Body Dementia, Susan Schneider, Williams’ wife, wrote a letter addressing all doctors, medical professionals, and patient advocates to share her husband’s story. You can read it here: The Terrorist Inside My Husband's Brain.

There is no cure for Lewy Body Dementia yet but we are hopeful. CureClick has launched a new mission for a clinical trial for Dementia with Lewy Bodies to help find potential treatment for patients suffering from this degenerative disease. Please share this trial with everyone you know and help raise awareness.

This is a direct passage above from "Cure Click"

Friday, October 14, 2016


Again this is so critical to me in such a very personal way. If you and a loved one has been diagnosed, or shows "signs or symptoms" of this extremely rapidly degenerating type of Dementia, you can screen for a Clinical Trial sponsored by Cure Click. I watched it take my Mom within 6 months. She had "some signs" of dementia, forgetfulness, and several others about a year or two before. Yet, none that led to a real diagnosis, then this horrid disease seemed to "take over" suddenly, and I literally watched her "change" day by day, as I've told the story so many times. This is NOT your "typical dementia or even Alzheimer's) not that they are not awful, yet Lewy bodies as a whole different type of dementia, aggressive in nature... and honestly, they still lack a great deal of the "why's" of this particular one.... Please share this with others. I would so appreciate you giving out this to others that may have someone they have seen in this type of rapid declining of mental, physical, and emotional realms so suddenly.

Been told you or a loved one have #LewyBody #Dementia? Participate in a clinical trial! See if you qualify. 

Wednesday, June 15, 2016

Me, Ill again, sprained both ankles, yet made it through the funeral, and things are "okay".... more later...

Quickly, of course all went well actually with Mom, the funeral, and so forth. Things turned out nice, but simple as she would and did tell me many times she wanted. So, for that I feel blessed. I will miss her more than you can know, right now, I feel I am still in "shock" because it all happened so very fast. Yet, if it has to happen, that honestly was the best "outcome"... no longer her suffering, no longer her not knowing anything, and I just am "grateful" in many ways, that if this had to be as is, it did as it was... The Lord knows "how much" we can handle... thus He also allowed me to accidentally slip Sunday morning off my own porch in the very wet grass, while on the phone with Amanda Batson- Matheny and I SPRAINED not just ONE ankle but BOTH, the right one extremely bad. I did go and have them X-rayed Monday afternoon after the funeral, and they feel there are no breaks BUT due to the immense swelling, he said I may need to have especially the right one X-rayed again in a few weeks, depending on how it does... Amanda Batson- Matheny, Jimbo, Jason Harber and other friends and family, I am so very appreciative of the kindness. the help, and how many of you surrounded around each of us and Mom so we could find some "peace" in that Valley.... I shall later again tell more about last Thursday when she passed away, her little frail hand in mine, but honestly I AM SICK! I "thought" that us having all the of stress, eating out so much, and I am not used to that, not sleeping, and being so busy with everything had just worn me down but I woke up running fever this morning... so I guess that is God's way of "keeping me off my feet"... I can "endure" the severe ankle sprain pain, BUT I am a baby when it comes to fever, even just a degree gives me the worst headache and just makes me sick as hell. So, I am dealing with that this morning, which for now is okay... we got a great deal of things going and done, and of course over the next weeks and even months there will be more... but for now all of the most important things are done, and we all need a bit of rest and time to reflect... so if you don't "see" me here or hear from me, I am just feeling lousy between all of it and I am not really even online, nor answering the phone unless it is Amanda, Jason or someone "important" for now.... Again from all of my family to all of you our sincerest Thank you's.... Life is truly fleeting.... Rhia

Tuesday, June 14, 2016

Thank you Extended Thoughts, Gratitude, Life, Lupus,RA, & All of the Health Issues In between...

First of all, I want to extend a very heartfelt Thank You, in behalf of myself, and my family for all of the support, thoughts, prayers, and the many that lifted myself, Mom and family UP, while she went on to be in a much better place last Thursday morning.

It was serene and surreal - both - me there with her, holding her tiny hand in mine, as I "knew" like I said I would that "time" was near, and she was ready to go "home" to be with my Dad, and all of the loved ones, that had passed away before her. As I sang several hymns to her, all of which were songs that she so loved to hear my Dad sing, and did here him sing, many, many times over, and I finished the last of the old hymn "Pearly White City", Mom drew one last breath, and that was it, and it goes "Tis' finished".

There was such a mixed emotion there just the two of us, so silent, yet the moment spoke in volumes that I knew she was at peace, no more pain, no more suffering, no more of laying there, having no quality of life... and I had lost not just my Mom, but someone I had grown very close to over the past 10 years in different ways, and the thoughts of all of our laughs, fears, talks, trips to the Winstar over the years, and all came flooding over me, like some of the floods we have experienced as of late, yet much in a good way.

I suddenly felt "peace" also. I suddenly in my heart of hearts knew, that all we had "endured" over the past at least 8 to 9 months and really much longer, now was over, and we could both rest in the fact, that she moved on to be "better" and my own "job" here on Earth is far from finished.

Not just "things" to do because of her passing, but LIFE to live, that I know now was waiting for this to happen. NOW, is when after things are settled that I shall finish my 3rd book, because "her story" shall be a part of that book.

I want to once again extend such a thank you to our Physician's Choice Home Health Care here in Ennis, as well as our Family First Hospice. All of them, especially that last week with the Hospice people would been so much more difficult had it not been for them. They look this horrible situation, and made it a bit easier to bear.

I am in gratitude of Keever's Funeral Home, Father John from the St. John's Catholic Church here in Ennis also, the Ennis Flower Shop who did such a beautiful job on the casket spray, and everyone else who sent their wishes, flowers, donations, and put their love and arms around my family, as we dealt with and continue to deal with a very sudden loss.

As the days move forward I will now be able to begin another realm and branch of my journey here, in my writing, and in my life. Of course there are still many things on the "list" of to do's, yet as I do those, I will now be able to get more back into my own writing, and pray that my "voice" shall once again speak to me in order for me to complete my 3rd book, and publish it.

I also have more advocacy work to do, since Alzheiemer's/Dementia, especially Lewey Bodies Dementia, will become a huge part of my advocacy work....

I wanted to catch each of you up, and let you know what is happening, give you some links also, and again tell you how much I so appreciate your reading my posts, and continuing to follow this journey we call life.....