What Is This Thing Called Lewy Body

I know its been a long time since I have blogged. My mind finds it hard to focus on a subject for more then a few minutes and my left hand has to do all the typing which is a challenge. But here I am on my third day of working on this blog and determined to get it done. 

As you know I was diagnosed with Parkinson's in 2017 and the doctors felt I had been living with the disease for 15 years. A few short months later the doctors added Lewy Body Dementia to my diagnosis. At the time I did not think much about the Dementia after all I was still processing the Parkinson's diagnosis. 

But lately things have started to change and I am finding that Lewy Body is something to take very seriously.

Tonight, I am adding info form the Mayo Clinic on what I face with Lewy Body Dementia.

Lewy body dementia causes a progressive decline in mental abilities. People with Lewy body dementia might have visual hallucinations and changes in alertness and attention. Other effects include Parkinson's disease signs and symptoms such as rigid muscles, slow movement, walking difficulty and tremors.

Symptoms

Lewy body dementia signs and symptoms can include:

·  Visual hallucinations. Hallucinations — seeing things that aren't there — might be one of the first symptoms, and they often recur. People with Lewy body dementia might hallucinate shapes, animals or people. Sound (auditory), smell (olfactory) or touch (tactile) hallucinations are possible.

·  Movement disorders. Signs of Parkinson's disease (parkinsonian signs), such as slowed movement, rigid muscles, tremor or a shuffling walk can occur. This can lead to falling.

·  Poor regulation of body functions (autonomic nervous system). Blood pressure, pulse, sweating and the digestive process are regulated by a part of the nervous system that is often affected by Lewy body dementia. This can result in sudden drops in blood pressure upon standing (orthostatic hypotension), dizziness, falls, loss of bladder control (urinary incontinence) and bowel issues.

·  Cognitive problems. You might have thinking (cognitive) problems similar to those of Alzheimer's disease, such as confusion, poor attention, visual-spatial problems and memory loss.

·  Sleep difficulties. You might have rapid eye movement (REM) sleep behavior disorder, which can cause you to physically act out your dreams while you're asleep. This might involve behavior such as punching, kicking, yelling and screaming while sleeping.

·  Fluctuating attention. Episodes of drowsiness, long periods of staring into space, long naps during the day or disorganized speech are possible.

·  Depression. You might develop depression.

·  Apathy. You might lose motivation.

 

Complications

Lewy body dementia is progressive. Signs and symptoms worsen, causing:

·  Severe dementia

·  Aggressive behavior

·  Depression

·  Increased risk of falling and injury

·  Worsening of parkinsonian signs and symptoms, such as tremors

·  Death, on average about seven to eight years after symptoms start

 

Therapies

Because antipsychotic drugs can worsen Lewy body dementia symptoms, it might be helpful to first try nondrug approaches, such as:

·  Tolerating the behavior. Some people with Lewy body dementia aren't distressed by the hallucinations. In these cases, the side effects of medication might be worse than the hallucinations themselves.

·  Modifying the environment. Reducing clutter and noise can make it easier for someone with dementia to function. Caregivers' responses sometimes worsen behavior. Avoid correcting and quizzing a person with dementia. Offer reassurance and validation of his or her concerns.

·  Creating daily routines and keeping tasks simple. Break tasks into easier steps and focus on successes, not failures. Structure and routine during the day can be less confusing

Lifestyle and home remedies

Symptoms and progression are different for everyone with Lewy body dementia. Caregivers and care partners may need to adapt the following tips to individual situations:

·  Speak clearly and simply. Maintain eye contact and speak slowly, in simple sentences, and don't rush the response. Present only one idea or instruction at a time. Use gestures and cues, such as pointing to objects.

·  Encourage exercise. Benefits of exercise include improvements in physical function, behavior and depression. Some research shows exercise might slow cognitive decline in people with dementia.

·  Provide mind stimulation. Participating in games, crossword puzzles and other activities that involve thinking skills might help slow mental decline in people with dementia. Encourage artistic and creative activities, such as painting, singing or making music.

·  Create opportunities for social activity. Talk to friends. Participate in religious services.

·  Establish bedtime rituals. Behavior issues can worsen at night. Create calming bedtime rituals without the distraction of television, meal cleanup and active family members. Leave night lights on to prevent disorientation.

Limiting caffeine during the day, discouraging daytime napping and offering opportunities for daytime exercise might help prevent nighttime restlessness.

Alternative medicine

Frustration and anxiety can worsen dementia symptoms. To promote relaxation, consider:

·  Music therapy, which involves listening to soothing music

·  Pet therapy, which involves the use of animals to improve moods and behaviors in people with dementia

·  Aromatherapy, which uses fragrant plant oils

·  Massage therapy

So I am 6 years into this disease and if you read all this you know I have already beaten

some of the odds. And I plan to beat many more. the Bible tells us

and I have Gods love and light carrying me. He knows my heaven date. It was set long before I entered this life. I am so blessed and plan to live each day as full as I can. 

Being the best husband

 Father 

PAPA RON 

BROTHER

AND FRIEND THAT I CAN

SO JOIN ME AS I MAKE ......

                MY JOURNEY

It's the story of your life
You're moving down the page
And you know you're on your way
The story of your life
You live it everyday
You can run, you run
But you won't get away
No one knows what's coming up
Where will you go now
It's the story
It's your story
It's the story of your life

Had it Been My Way

If I were to bring the new Savior into the world I would not have had him come as a baby, born to a virgin, in a manger with oxen lowing and sheep making a fuss. I would not have wrapped him in cloth and laid him in a manger of straw.

If I were to bring the new Savior into the world I would not have sent my messengers to tell shepherds in the middle of the cold night. Then to tell them to follow some dim light in the sky. What kind of announcement is that. And the shepherds? Oh my! Talk about the lowest class in society.

Can you imagine these shepherds sleeping in the field with the sheep and suddenly someone starts singing to you about a baby being born? AND its the savior?

If I would have done it I would not have done it this way.

BUT GOD DID!

A virgin who is just a child herself brings the King of the World to us. She is brought to Bethlehem by Joseph. This man not only is not the babies father he is not even the husband. What a powerful first message from our God that we are to trust him in all times and in all things.

The baby is not born in the noisy busy Inn with loud celebration but instead he is  born with the animals in a manger with only oxen and lambs to witness the joyous event. No distractions. Just angels singing and the warmth of the animals to ward off the night time chill. So much peace. So much love.

The angels appear not to the King but to the shepherds the lowest of all in society. Imagine their fear. God was saying I send my messengers to the shepherds to show that this savior this King is for all men no matter who they are because all are loved by him.

A wonder star lit up the night sky removing the fear of darkness and giving all people a path from the life they were living to the baby that brought us salvation.

And the Angels sang.

Today, that baby still waits for you. Today, we still hear the angels songs. The same angels that announced his arrival still call to us to come celebrate his birth. Today, some 2000 years later we still look for a light in the darkness that will bring us peace.

No matter who you are the Glory of Gods gift is for you. No matter your challenges, worries or frustrations God is with us. So celebrate the King and be glad that God did it his way.

"Glory to God in the highest of heaven and on earth peace to all "

Noel, Noel
Come and see what God has done
Noel, Noel
The story of amazing love!
The light of the world, given for us
Noel

Bring On The Glory

"Whatever you do, do it all for the glory of God" 1 Corinthians 10:31 

Hello.  I know its been a long time since my last blog and if there is anyone still reading Thank you.  It is a very slow process to type so this takes time. Thanks for joining me.

To the general public, those who don't see me daily and those who I work to hide it from I don't have Parkinson's. In fact, a few weeks ago I was at breakfast with a friend that I admire and he said "to the public you don't look different." My response was GOOD! I thought to myself the illusion is working.

The truth is my life has changed considerably since my diagnosis and daily tasks are not as simple as they once were. I have learned that there is more to this disease then just shaking of the arms and legs. There is more then just lost sleep in the middle of pure exhaustion.

As I have said in the past every person with Parkinson's has different symptoms.Parkinson's has decided to attack the dominate side of my body. It started with my right arm. At first, it was just an annoying arm ache. Later, it made carrying items difficult as my strength and energy were compromised. Now, most of the day my arm is worthless. It will not write, type or move. To top it off the pain is crazy. It is like my arm is in constant flex and stiffness.

The pain has now moved into my hip and my right leg. Walking hurts. Sitting hurts. Laying down hurts and sleep is impossible at times and at times I fall a sleep in the worst pain possible only to wake minutes later with leg and body cramps. I get tired so easily.

I think the biggest obstacle is my facial expressions and my communication. Parkinson's causes what is called stone face and at times I can be in a great mood but my expression is one of anger and sadness. My voice control can be difficult as well. At times I sound mad, at times I speak in a whisper and other times the shaking of my tongue makes my words wrong.

Then there is the embarrassing memory. As I have said I have Lewy Boby Dementia and it makes remembering the simplest names difficult sometimes.

Now put all this together and you can understand that this disease stinks.

But Life does not! Why? Because everyday God looks at me and sees the truth.

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times

I do not talk as much as I used to. But I am a better listener. I don't move very fast or as much as I used to move. I retired from many volunteer things I used to do but I find peace in the smallest of moments. A night sky, a child's laugh, a visit with a friend and attempting to take pictures with my hands shaking.

So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of

The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty

No matter where we are in our struggles we still have life to celebrate, we can still bless others and we can still look forward to a life full of blessings and grand babies. No matter the challenges we can still find ways to bring glory to God.

I am blessed with an amazing family. I am blessed with wonderful friends and daily I am blessed at work by awesome co workers. All of you allow me to work to bring God glory. No matter how bad the day is, no matter the rain all these people in my life help me rise above the pain and cross the finish line.


Bring The Rain
Mercy Me

​

A Very Blustery Beginning 

That morning when I got out of bed, it was raining. It rained while I got dressed for school. It rained on my way to school and during all 6 periods of class. As we left for the game there was a break in the clouds but before long it was raining again.

When the game started it rained like never before. For four quarters and a whole half time it rained. We cheered. We yelled. We hoped. We prayed. Our playoff hopes washed away like the chalk marks on the field in the rain storm. We lost.

As we loaded up to head home we were 6 buses of tired wet rooters. I imagined what my fellow classmates must be feeling on the players bus. Here I sat with shoes full of mud and a sad heart but they were covered in mud and their hearts must be hurting just as mine. Not to mention their sore bodies. The bus lights hardly seemed to break the darkness that was ahead of us, but we moved forward into the night and towards an unknown future.

Life has given me many rainy days when I  thought the sun would never shine again. Brain surgery, back surgery and now the daily struggles that Parkinson's Disease and Lewy Body Dementia. There are many things in my life I would love to change, things that have set me back and challenges that I had to overcome.

You can't go back and change the beginning but you can start where you are and change the end.

But a diagnosis and prediction of what is to come are just that: A Prediction of what is to come and while I cannot change the past, the beginning, I can change the current situation and I control how it all ends.

No one can do it alone. We all need that someone that carries us or that someone that keeps us focused. Many have asked why it has been a while since my last post/ The  challenges of typing are real and so is the pain most the day I cannot make my right arm do what I want it to do. Sometimes I can write sometimes its a scribble. Sometimes I walk well and sometimes I stumble. 

We are not alone and Krishna and I are forever grateful for those who continue to bless us and protect us during this Journey. While I lean on God and family, my family leans on God and our amazing friends and community we have the joy of belonging to.  The dinners, hugs, calls and so much more are a reminder that we serve a God and a community that is amazing.

What concerns me are those that do not have close family and friends to lean on. Those fighting cancer, isolation due to illness, elderly, those with mental illness and so many others. Have you checked on your neighbor?

Tonight, I celebrate my 28th Anniversary with an amazing woman, a woman who could have easily walked away from all of these challenges but instead chose love and chose to continue on "My Journey". 

I will pledge my heart
To the love we share
Through the good and the bad times too
I'll forsake my rest
For your happiness
'Til my death I will stand by you

With God as my witness
This vow I will make
To have and to hold you
No other to take
For rich or for poor
Under skies grey or blue
'Til my death I will stand by you

There are wars and there are rumors
Of wars yet to come
Temptations we'll have to walk through
Though others may tremble
I will not run
'Til my death I will stand by you

I will put on the armor of faithfulness
To fight for a heart that is true
'Til the battle is won, I will not rest
'Til my death I will stand by you

With God as my witness
This vow I will make
To have and to hold you
No other to take
For rich or for poor
Under skies grey or blue
'Til my death I will stand by you

'Til the battle is won
I will not run
'Til my death I will stand by you

So To Honor Him

Have you ever had a time in your life where you felt overwhelmed by the things of this world? Where life seemed so hard and no matter what you did, things just wouldn’t go right? I know that in my life when I try to do everything with my own strength alone it does not turn out well. When you are heavy-laden it is like your spirit, mind, will, and emotions can’t function because there is this weight on you that you try to lift by yourself. It causes you to feel down, depressed, anxious, all those negative things that we do not want in life.It is sad that sometimes in life we are so overwhelmed with major burdens the simplest of things can get us down.  

Then add to all of this the challenges I face daily with my Parkinson disease and the frustration that comes as the disease changes from day to day and sometimes from hour to hour. Sometimes I walk well and sometimes I stumble. Sometime I talk well and sometime I stutter. Sometimes my arms shake sometimes they will not type on the keyboard and then there are times they work the way I want them to work.

Krishna

The thing that frustrates me is watching the disease take away Ron's energy. I used to watch him run from project to project and never run out of energy, now he gets tired easily and once simple projects are now monumental tasks. Someday's, just bringing in firewood requires a nap and his weekend chore list goes unfinished for weeks at a time.

Ron & Krishna


Then comes the realization that WE are not in charge. The biggest thing that we understand is that even though we have been given this challenge, we still have the opportunity to bless others and bring glory to the God that we love so much.  A God that lovingly blesses us each and everyday. So tonight, we would like to announce our way to honor HIM this holiday season and bless others who are fighting a battle with Parkinson's disease.

We have teamed up with UCSF and the National Parkinson's Foundation and will be bringing the first EVER Parkinson's Foundation Forum to Tuolumne County. " And it Shall be for all people."

                                     

AND

Peaceful Journey

The Ronald & Krishna Hamilton Parkinson’s Foundation

​

​Invite you to attend a

Parkinson’s Disease Forum

Speaker:Aaron Daley, MA

UCSF Parkinson’s Disease Clinic and Research Center

                                       A Parkinson’s Foundation Center of Excellence

This program will include a PowerPoint presentation on aspects of Parkinson’s disease and its treatments, followed by an extended Q&A.

Parkinson’s patients, caregivers, family, friends are all welcome to attend.  Community agencies and representatives from the Parkinson Foundation will also be present.

Free Lunch will be provided.  

Friday, January 25, 2019    11:00-3:00 pm

SIERRA BIBLE CHURCH 

Sonora, CA

Please contact Krishna Hamilton (krishnaron@comcast.net) or 206-3071 to RSVP for this event.

Lets ALL make this journey together. If you know someone with Parkinson's or a Parkinson's Care Giver or even if you or someone you know would like to learn more please join us. I know I would love to see you there. It helps me have hope knowing I have people in my corner. It helps to know that friends and family are carrying us and holding us as we make "My Journey."

Keep It Between The Lines

When I was a kid my Dad would take us grocery shopping at night after work. Many times we would take the back way to Safeway, but on many special occasions we would make the adventure up the long winding Shaw's Flat road to Roy's Easy Market. Roy's was a special place because there were so many great memories waiting in the store.

We would park in the dimly lite parking lot and make our way though the heavy creaking double doors. When you walked into the store there were great smells of chicken cooking in the rotisserie, sausage being made and sawdust on the floor. My cousin Jimmy worked in the meat department and I always wanted to ask him why they had sawdust on the floor and why they never cleaned it up.

 We would order our meat and chat with Jimmy. More often then not Jimmy would hand me a cold hot dog to munch on while we were shopping. When we were ready to check out Dad would let me buy a candy or soda pop for the long trip home.

The ride down Shaw's Flat Road at night could be a scary one as we never knew if we would see a deer , skunk or even an old porcupine. Some nights when we round the bend by the old cattle corral Dad would turn off the truck and we would coast down the road with no sound, no engine running, no sounds of a truck at all. We would roll down our windows and watch the dark road in his headlights and hang our arms out the window like we were flying.

We were undercover cops looking for bad guys, wild adventurers looking for wild animals and bad guys hiding from the law. Our imagination ran free and there was not car phone or car television to ruin the fun.

As we came to the corner near Golf Links Road Dad would turn the key to on and pop the clutch. BANG! The engine would start and that rusty old truck would carry us over the hill past grandpas ranch and home to Mom for dinner.

 There came a day when Dad had me climb up on his lap and he would work the peddles and help me steer the giant wheel that made the tires turn. Then came the big day when Dad would slide to the passenger seat and I was allowed to take the truck for myself. I can still hear his voice as he gave me directions.

He would say " Now son watch the road all the way out where the lights are shining not just where the hood of the truck is. Remember the button on the floor control's the lights. Be slower then the limit and just keep it between the lines." That was a lot to remember for a kid but Dad was right there and I knew he would keep me safe and keep me from straying off the road.

Today, my life is like those early days of driving that old pick up. As I grew God was steering my life but like most kids I eventually took over the wheel and then the pedals that controlled the gas and brakes. I found out fast that when I tried to run it myself I ended up in many accidents.

Then along came marriage, kids and Parkinson's Disease. My days are filled with decisions, weak legs, low energy and the challenges that a disease can present to a man like me. At first on my real bad days I hand the keys to God and said you drive my arms are weak my spirit is low and I am tired.

As Parkinson's takes more control of my body it has not taken control of my mind or spirit. Some days I let God drive and I roll down the window and feel the wind blowing as we quietly float down the road. Other days I sit on Gods lap and he lets me share the wheel and when I am real lucky he sits in the seat next to me and I drive.

God of course is always in control and giving his fatherly advice.The road may be dark and scary and there might be things hiding in the dark but God reminds me to not look to far ahead of me but to focus on all that is in my view, to never run through life to fast and to always keep it between the lines. With God along for the ride I know that I have an  amazing life ahead and that he will carry me on "My Journey."


Cause it's a long, narrow road
Only the good Lord knows
Where it leads in the end
But you got to begin
So keep your hands on the wheel
Believe in the things that are real
Just take your time
And keep it between the lines