Category Archives: LBD

Five “ponderable thoughts” about grabbing “a second chance to live life”

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Five “ponderable thoughts” about grabbing “a second chance to live life”

The author of this short article draws a comparison with Ebenezer Scrooge who was “fortunate to get another chance in life despite a lifetime of despicable behavior towards others.”  The author encourages everyone facing a neurological diagnosis to grab “a second chance to live life and enjoy its splendor and beauty, whatever that is. No pity, no remorse, just joy that every moment should and will be spent making this life a better place then we got it.”

Though this reflection was written by a gentleman who lost his wife to Lewy Body Dementia in September 2016 (and posted to the Lewy Body Dementia Association website), there is nothing LBD-specific (or even dementia-specific) in the message.  And though this was written by a caregiver, the five “ponderable thoughts” apply to those with a neurological diagnosis.  The first and last thoughts are religious.

Robin

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www.lbda.org/node/2852

Excerpts from

The Crux of the Matter
by Alan Silberstein
Monday, January 9, 2017

[This article is] written as a reflection much like “A Christmas Carol” by Charles Dickens. Ebenezer Scrooge was fortunate to get another chance in life despite a lifetime of despicable behavior towards others and live it to the fullest greater good. This disease, for those lucky enough to be diagnosed early truly, has a second chance to live life and enjoy its splendor and beauty, whatever that is. No pity, no remorse, just joy that every moment should and will be spent making this life a better place then we got it.

So, here are a few ponderable thoughts:

First, if nothing else get spiritually centered. For me, that means be right in the Lord. I find peace and comfort in knowing that His light always shines down upon us. No matter what the situation God is in control. When the 23rd Psalms states “The Lord is my Shepherd, I shall not want…” I believe it means just that; everything I will need in this life is provided. The only thing the Lord wants me to take control of is my attitude. No matter how hard, my positive attitude is paramount. Each day brings new adventures – new highlights, new joys. The alternatives take way too much energy.

Second, learn from the past so you can plan for the future. This will allow you to live today. For example, how did raising your children prepare you for the next stage of grand parenting? Just like savings for retirement, did you learn anything from ‘a penny saved, is a penny earned’? We have a future; it is just a little unpredictable. Create a ‘bucket list’ of things you want to do. Then go do it with your family and/or significant other. Each time you check something off a new adventure starts. That is just plain excitement and happiness.

Third, take nothing for granted. You may have an awful diagnosis but let’s put it in perspective. There are things far worse, like if your spouse is near death and there is nothing other than prayer you can do to help. Open your eyes to your surroundings and see things that eluded your sight all these years. Then, relish in them.

Fourth, if you are young enough, plan for retirement and that ‘rainy day’. We are mortals and cannot predict the future, no matter how much we might like to. A proper plan today will lead to peace and security when the time comes. Believe me, it does come and not on your schedule.

Last, each day is precious. Treat it as such. We know what it is like to not know if there will be another. Each day do a random act of kindness. Despite our disease, paying it forward is healthy and makes one appreciate the glory provided to us by God.

Newspaper article on risk of antipsychotics in Lewy body dementia

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This is a good article from a UK newspaper about the importance of proper diagnosis of dementia — Alzheimers, Lewy body dementia, or something else — because of the dangers of antipsychotics in LBD.

That being said, many in our local LBD caregiver support group do find value in atypical antipsychotics.

Here’s a link to the article:

www.independent.co.uk/news/health/lewy-body-dementia-prescription-antipsychotics-thousand-risk-injury-death-drugs-treatment-alzheimers-a7827431.html

Lewy body dementia: Thousands ‘at risk of injury or death’ due to inappropriate prescription of antipsychotics
Prescription of these drugs often worsens symptoms and has been found to increase the risk of death fourfold
Katie Forster, Health Correspondent
Thursday 6 July 2017 11:58 BST
The Independent (UK)

Robin

“Learning to live with Lewy” (Zionsville, Indiana)

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“Learning to live with Lewy” (Zionsville, Indiana)

Here’s another article from a local newspaper in Indiana about a couple coping with Lewy body dementia (LBD). The article features a two-minute video with Mary Milberger, the caregiver/spouse. The article notes: “From 2012 until November 2016, Tom [Milberger] was prescribed various medications from various doctors trying to help cure his symptoms of muscle freezing and loss of words. Yet, the medications were only fueling the disease. The medications were causing high levels of paranoia, on top of his already mounting symptoms.” Based on these problems, Mary came up with the LBD diagnosis.

Robin

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www.timessentinel.com/news/local_news/video-learning-to-live-with-lewy/article_ea1bf58c-fedb-5dfd-bc63-a8d0a693e642.html

Learning to live with Lewy
One disease alters life for local couple
By Tilly Marlatt
Times Sentinel (Zionsville, Indiana)
Jun 28, 2017

His hand visibly shakes as he struggles to take a sip from his glass of tea. Removing his glasses takes longer than normal. His bottom lip quivers as he struggles to find words. At the age of 71, tremors may be written off as a sign of old age, but for Tom Milberger of Zionsville they mean much more.

Tremors are just one symptom of Lewy Body Dementia. Hallucinations, loss of facial expressions, falling, and a lack of self-control are all other symptoms he has experienced since November 2016 when he was officially diagnosed with Lewy Body Dementia.

Milberger’s tremors are visible, but they are simply outward disguises of his real struggle. Lewy Body Dementia is similar to Alzheimer’s, but varies in the way that it impacts the whole brain, not just one part.

Milberger’s joking mannerism and broad smile doesn’t tell the full story of who he is or who he was. Milberger spent 20 years in the U.S. Army before becoming a project manager with T-Mobile. He became the first person to retire from the company in 2008, prior to the onset of LBD.

“I’m really good at giving hand shakes,” he jokes. With constant tremors caused by the Lewy Body Dementia, or LBD as it is often referenced, giving a handshake seems to be one of his few normal gestures remaining.

Most nursing homes throughout the state of Indiana will not accept a person with LBD.

Luckily, Tom Milberger has a dedicated caretaker by his side, his wife of 37 years, Mary.

She sits at their dinning room table with her iPad, and a yellow folder, overflowing with pamphlets, charts, and other resource guides for becoming educated on LBD. The disease is widely undiagnosed. Tom was undiagnosed at the onset, but his wife knew there was more going on. His early symptoms originated back in 2012, but Tom’s doctor failed to diagnose him.

“It’s very important that they [LBD patients] do get told this diagnosis, and not be labeled,” Mary Milberger said.

From 2012 until November 2016, Tom was prescribed various medications from various doctors trying to help cure his symptoms of muscle freezing and loss of words. Yet, the medications were only fueling the disease. The medications were causing high levels of paranoia, on top of his already mounting symptoms.

“He was hiding his wallet in his pillowcase at night,” Mary Milberger said. “That’s when I spent many nights on the wonderful iPad studying different symptoms. Only then did I realize he had every symptom of Lewy Body Dementia.”

The Milbergers then went to meet with Dr. Jared Brosch at the Indiana University School of Medicine. After meeting with Dr. Brosch, he told Mary Milberger that her “arm chair diagnosis was right,” as Milberger recounts. LBD patients can never have a definitive diagnosis. Only during autopsy can it be confirmed. Dr. Brosch is leading a study on patients with LBD, in which Tom Milberger is enrolled.

 

“How to Choose a Dementia Care Facility. Avoid My Mistakes.”

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This is a very helpful article about choosing a dementia care facility.  The author is North Carolina-based Donna Plunkett St. Clair, whose husband was diagnosed with dementia in 2010 at age 59 and then with Lewy Body Dementia (LBD) in 2015 at age 65.  Donna shares the mistakes she made in choosing the wrong care facility…twice.

Here are the ten lessons Donna learned:

1.  Start investigating potential facilities NOW.
2.  Learn how your loved one’s care will change as he/she declines.
3.  Learn how “problems behaviors” are defined and ask about examples of what might lead to a resident being forced to leave the facility.
4.  Know what you can afford.
5.  Assess if the facility is using innovative designs.
6.  Ask if the resident can safely go outside.
7.  Ask about safety.
8.  Inquire about staffing levels, activities, and supervision for holidays, evenings, and weekends.
9.  Ask if residents are encouraged to stay hydrated, and are offered second helpings and snacks.
10.  Check service levels and quality when the facility least expects you.

These lessons are detailed in the article here:

www.lewybodydementia.ca/dementia-care-facility-choice-avoid-mistakes/

How to Choose a Dementia Care Facility. Avoid My Mistakes.
By Donna Plunkett St. Clair
Posted to Lewy Body Dementia Canada
May 29, 2016

Robin