A Conversation about Multiple System Atrophy

“I can’t do this anymore!”

“Do what?” the mind asked.

“This bouncing back and forth. Keeping my faith. Thinking everything is going to be alright. It’s just too much!”

” I understand what you are saying. I play this game every day, sometimes several times per day. It just gets old. I look down at my body. I see the crepe skin, the bags under my eyes. I see the smile try to widen and the reflection of tears welling in my eyes. I see my swollen legs and feet. I feel the sick feeling in my gut.”

The two sit in silence digesting each other’s words. Shame and guilt over the battle of the thoughts. Realizing there is not a damn thing that can be done. No cures have been found and it doesn’t seem enough people really are aware of the  need.

Thinking back to the days of bright sunshine. “Remember when we used to walk down to the playground and sit in one of the black, leather seats hooked up to a metal  chain? We pushed with our legs. “Remember when we had stronger legs?” Silence.

We felt the breeze brushing our hair and the feeling of freedom and joy. Wow, those were awesome times! “What happened? I don’t get it! It wasn’t supposed to end up like this, for heaven’s sake!”

“Today, our legs swing, but not the way we like. They swing when someone tries to sit me  up on the edge of the bed. They swing and feel like a wet rag when they believe I need to get up and take a real bath.”

“Why don’t people just leave us alone? Can’t they see we are humiliated by them having to witness what our bodies can’t do any longer? Damn it! Just leave us alone. We just want to be left alone and die with some dignity!”

“They love us dummy. That’s why they do the things they do. They don’t understand how we feel just by looking at our faces. They have to read our eyes! How can they feel our pain when we can no longer say a word?” Silence

Letting out a deep sigh, the other follows the lead. “This sucks, you know. We are no longer someone they can count on. They are being forced to ponder on what their life will be like once we are buried and out of sight.

“Yeah, you are right. We ought to feel more compassion for them. We promised them the world and forever, and we are now giving them a view of less time.”

“I agree. Let’s give them a break. Let’s try real hard not to show the pain we are in. Let’s try to show appreciation in any way we can, that they are still sticking beside us, taking care of us. I wonder why they do that? They could just take off and find another life.”

“Dummy, they stick around and do what they do for one reason.”

“What’s that?”

“They love us.”

Written by,

Terry Shepherd

06/26/2018

 

Save our Youth

What makes people do bad things? I just read where a babysitter bit a three year old. For heaven’s sake! She was the babysitter? How in the world do parents find the right person to care for their children? It doesn’t do any good to get references, people can lie.

 

Word of mouth is a good way to find a good babysitter in my opinion. Someone who has already tried and have been satisfied with the care. What about the things going on in our communities?

Priests who are pedophiles. Gym teachers, coaches. Why can’t we trust our leaders?

(Pedophilia, or paedophilia, is a psychiatric disorder in which an adult or older adolescent experiences a primary or exclusive sexual attraction to prepubescent children.)

It seems these two-legged creatures hide behind their jobs, looking and abusing our youth.

http://www.fox25boston.com/news/trending-now/3yearold-allegedly-assaulted-by-her-babysitter-dies/717932130

 

https://www.ncronline.org/news/accountability/buffalo-diocese-priest-says-he-abused-probably-dozens-boys

 

https://nypost.com/2018/02/19/us-swimming-did-little-as-hundreds-of-coaches-abused-kids/

 

Do you believe that the more we take God out of office, the more damage is done to our people and youth? Let me know your thoughts on this question.

 

Something has to be done. We are hoping our youth will help care for us when we grow old. Do you want someone caring for you when you are helpless when their mind has been torn and damaged from their childhood?

What can we as citizens do to change things? Please share your thoughts with me.

 

 

 

Daily Prompt/ One Word Prompt

https://dailypost.wordpress.com/prompts/incubate/

The word for today is; Incubate

verb

1. (of a bird) sit on (eggs) in order to keep them warm and bring them to hatching

Can I exchange a bird and an egg for a person and a life? I consider what I did, in a way, incubating.

My mother passed away quite suddenly. She was a God-fearing, loving and kind woman. She helped open a Women’s shelter here in Warsaw. She and my dad used their own funds and bought an old camper. They gutted it and installed everything needed to make funnel cakes. They traveled to the small-town fairs and sold these goodies and donated all the funds, including the monies to purchase ingredients, to the Beaman Home. She helped people and never let on she was helping them.

https://www.thebeamanhome.com/

She never smoked. I heard her swear once and it was only the word, shit. At the age of sixty-two, she had a sudden Anneurysm.

https://www.webmd.com/brain/brain-aneurysm#1

None of us could help her. She passed away.

I also took care of my dad who had Multiple Myeloma and Leukemia with a little bit of Parkinson’s mixed in.

https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378

https://www.mayoclinic.org/diseases-conditions/leukemia/symptoms-causes/syc-20374373

His illness lasted about one year and then he passed. I did all I could, but God wanted him worse.

Then there was my brother. A mentally challenged man who had one heart attack and then Multiple System Atrophy hit him big.

Multiple system atrophy (MSA), also known as Shy–Drager syndrome, is a rare neurodegenerative disorder characterized by tremors, slow movement, muscle rigidity, and postural instability (collectively known as parkinsonism) due to dysfunction of the autonomic nervous system, and ataxia.

(It is kind of creepy and a little scary for me to read back that definition of MSA. I too, have a neurological disease. My doctor can’t decide if I have my brother’s illness or not. He says in time he will be able to tell. My diagnosis is; Parkinsonism/Dystonia/Ataxia. You can probably understand my fear.)

When my brother had this terrible illness and on top of all the other stuff he had went through, I decided to incubate any time we had left, which ended up being seven years, the general amount of life time on this particular illness.

I paid close attention, more than my dad I think, to every feeling, need and want he wanted. I spoiled him rotten. I made sure he had the best doctors we could find and afford. I fed him healthy foods. I told him many times how important he was to me and how much I loved having him for a brother.

I was drained and tired and physically in not the best shape when he passed; but I wouldn’t trade a moment. I have beautiful memories of his and my time together. I shed tears still, but not as often. He will be gone from my vision four years, March 24th, 2018. I feel like I incubated and watched over his days and nights until he was ready to be born into God’s hands.

March is Awareness month, and I am still  praying for a cure. Purple is the color that represents Multiple System Atrophy. The guy on the scooter with the big smile? My brother. The banner at the bottom is where you can call if you are in crisis.

 

Suppose, Imagine, Pretend, Tell, Despair/MSA

MARCH IS MULTIPLE SYSTEM AWARE MONTH

GO TO MSA.ORG   LEARN, GIVE, HELP FIND A CURE

DEDICATED TO MY BROTHER WHO DIED FROM THIS TERRIBLE ILLNESS FOUR YEARS AGO THIS MONTH.

 

SUPPOSE, IMAGINE, PRETEND, TELL, DESPAIR

Suppose one day

Things don’t feel right

Tremors or falls

But able to function.

 

 

Imagine going to the doctor

Expecting to hear familiar words

When nothing makes sense

You are condemned to death.

 

 

Pretend nothing is happening

Keep all to yourself

But daily chores

Are becoming a burden.

 

 

Tell all who love you

No one understands

They see you acting weird

They fade from your day.

 

 

Despair  surrounds you

You feel like giving up

You pray for a cure

You scream to the world.

WRITTEN BY,

TERRY SHEPHERD

 

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Being a Caregiver can be a Bitch

Oh my God! I instantly get pissed off when I read crap about caregiver abuse.

I posted an article about a family member and the caregiver abuse that was involved. How can people do this?

I know from my own personal experience; being a caregiver for a patient can be very stressful. It’s even worse for a family member to be the primary caregiver.

Caregivers have to watch the illness take over the life and watch to the very end; which many times ends up in a sad situation.

Family caregivers fight with various emotions. They are watching their loved one become less than the person they knew.
Many times there isn’t enough relief and the hours turn into many long and lonely hours.
Sometimes caregivers fight the memories. Why didn’t they do more, say more syndrome?
Then there is the background noise. People suddenly start claiming property or trinkets as if the patient was already deceased.

Thoughts have to eventually turn to the future. Questions roaming in the mind can often be; how will I make it? Why didn’t we prepare burial insurance? Will I have to sell the house? I can’t keep doing this forever; I have a job!

So many questions, so much emotion, and yet we continue to move through the days. Why? Because we genuinely care about the patient or they are our spouse and we love them.

My brother, Al, was no easy piece of cake to take care of. He was mentally challenged in his thinking, especially. Having Multiple System Atrophy and Parkinson’s, kept him even slower with his thinking.

Various times I was screamed at, threatened, verbally abused, and there were even a few times I was hit by him. Sure, the normal part of me said, FORGET THIS CRAP!!!! I DON’T HAVE TO DEAL WITH THIS.

That thought entered my mind. For God’s sake; I am human, but the love I felt for my brother; kept me going on for those seven years. I was blessed with, from God, to be a caregiver.

I actually loved and still love taking care of people who need help, but let’s face it, every day isn’t a picnic. Next month will be four years since I lost my brother to MSA. I wouldn’t change a darn thing I did. I know I did a good job. Well there is my little part of patting myself on the back; if you wish to see it that way.

The point I am trying to make is; not everyone is born to be a caregiver. Some can’t face watching the patient decline. Then there are those who seem to have the gift. They put their heart and soul into it, and care about nothing more than giving good care and comfort.

If you find you can’t care for a person. Don’t continue to do so out of guilt. Bad things happen from guilt. Examples, anger builds, neglect can happen and so many other things.

Except you are not the person to be performing this type of work.. Look at alternatives. Ask for help. Seek Respite care, family members, nursing homes, elderly attorneys. Do what is right for you and the patient.

When I read about caregivers who abuse and neglect their patients, I try to understand how it happened, but the fact is; it happened.

Thank-you for letting me get this off my chest.

Terry Shepherd
A former caregiver for many years
Now dealing with Parkinsonism/ Ataxia/ Dystonia

#MSA, #Parkinsons #Caregivers, #Patientcare

 

The Invisible View

The Invisible View

It was out the back bedroom window, Rosie went to over and over. She would place her delicate hand on the window pane and stare across the empty field.

She would stand at the window for minutes and say nothing. I never saw her bat a lash. I barely saw her ribs going in and out, showing any signs of breathing, but I knew she was alive and I knew she was remembering; but when I looked out that same window; I saw nothing.

Who am I? I am the caregiver. I have been caring for Rosie for over a year. I take care of her while her family is at work. I prepare her breakfast, and help her with her bathing. I help her do crossword puzzles and I read her the morning paper. I prepare her lunch and the two of us sit at the tiny, kitchen table and these are the times that we have the greatest talks; but never once, is the window scene ever mentioned. I help her lay down for her naps and then I tidy up the house and sometimes start a load of laundry. Soon there after her family arrives home. This is our routine Monday – Friday.

Rosie was a kind, old soul. Some days I saw spark in her eyes and then there were times I saw a sadness that ran deep. On those sad days, there wasn’t much talk. There was more window time.

She was ninety-two years of age. The last time she was weighed, she was confirmed at 98 pounds. Her spirit was strong and most days, she ate hearty. She didn’t have a daily routine as most would. She always claimed to live for the moment, as you weren’t guaranteed the next.

Her doctor wasn’t sure why she was still with us. He claimed over the last six months her heart was weak and getting weaker. He stated a few times, something must be bothering her, or she would be sitting next to her husband in heaven.

I tried to maintain the same spirit as Rosie did. Why worry about tomorrow? We may not even get tomorrow. Deep inside, I wanted Rosie to open up about the invisible scene she stared at daily. One day she would, but on her own schedule. I just knew it.

As the weeks went by, I couldn’t help but notice Rosie did everything a little slower. She never complained and we still went to the window and looked out over the empty field.

It was a March day, when things turned. The sun shone bright, but the cold kept trying to enter our part of the country. It was time to take Rosie for our walk to the window. She raised her hand to the pane of glass. I glanced at her and saw tears starting to fall.

“What is it Rosie? Do you want to talk about it?”
She nodded her head. ” It was 80 years ago today. The day my life changed forever. I was twelve years old and my baby brother was three years old. Mama was busy and she asked me to watch over little Johnny because she had errands to run. I brought him over there.” Rosie pointed in the direction of the center of the field. ” You see, there used to be a park that stood there. It had things like swings and a teeter totter and a slide. I was spinning around on the merry-go-round and I wasn’t paying attention to my brother like I should have. Pretty soon I heard him scream. I used my feet and skidded my ride to a stop. I raced over. He had went down the big curly slide head first. Something must have happened because he all of a sudden quit screaming. When I looked at him, he lay real still and was quiet.”

“I ran home and told mama to come real quick. She and I ran over to Johnny. She started crying. Soon a doctor showed up and said, he was gone. Mama gave me the look. I had killed my brother.”

I instantly placed my arms around Rosie. ” Rosie, this was never your fault. You didn’t mean for it to happen. It was just too much responsibility for someone that age to be watching someone so young. Don’t blame yourself.”

” I knew better”, Rosie said. ” Mama trusted me and I let her down.”

I hugged her tighter. ” You never let God down Rosie. He loves you no matter what. He needed your little brother, more than you or your mama did. He took Johnny home, not you. God doesn’t blame you for anything dear friend.”

” Are you sure? I am afraid to die. I don’t want to have to see God and explain what I did wrong.” Tears fell bigger and faster. I wiped her tears and looked her straight in the eye.

” There is no reason to fear God. You are loved by him. He is waiting for you to come see your brother. You just have to let him know when you are ready.”

We turned from the window and went to Rosie’s bedroom. I brushed her hair. I took her slippers off and helped her lay down. I covered her up, gave her a kiss on the cheek and told her everything would be alright.

My shift over, I left and went home. I kept thinking about Rosie and what a burden she had been carrying for so many years. my evening was quiet. Finally, I went to bed. About two hours later my phone rang. I was told I wouldn’t need to come to work the next morning. Rosie had went home to see her baby brother.

Written by,
Terry Shepherd

 

Who Am I?

This is the name of my blog, Who am I? Well, after 63 years here on earth, I should know, shouldn’t I? I know less today than yesterday. I still have a perfect memory, or so I believe. Others have told me I am slipping and if so, it’s only a little bit.

When I was a kid, I loved riding my bike and playing with dolls. I really didn’t think about fitting in like the kids do today. There was routine when I was growing up. Mom and dad worked. I had a babysitter. Parents came home. Meal preparation, bath, a little TV and then bed. The only thing that changed through those years was a baby sister came along, and I traded the babysitter in for school.

The dream of latter years was to get married and raise a family; which I did. I was blessed with three wonderful children and now have awesome grandchildren. I don’t get to see them often but I have to remember, they are developing their own lives too.

Now that I am older and I have lost many family members, I am not so sure who I am today. I know that with my illness, I suffer from headaches and falls and tremors. I know that I don’t care for silence 24/7. I know that I enjoy being with my best friend in the world. I know that I love helping people. I have empathy and compassion that I carry within me.

I know that I hate not being able to earn a paycheck, but I realize that the rewards of helping others is bigger than money itself. Sometimes money just isn’t the main deal, is it. When you get in my age bracket, I worry more about having enough money to buy groceries, or pay for medicines, or keeping up with the high auto insurance companies prices.

A lot of people have entered my life throughout the years. Some I miss dearly and always tell myself, God placed them there for a purpose. I keep in touch with these friends, but miss our chats we used to have.

I have made many new online friends on my Facebook page. Many are patients or caregivers and families. These are beautiful people with hearts so strong and a will to wake-up tomorrow.

Today, I was happy to receive notice that I had been nominated an award at Wego Health.

Wego Health is a mission driven company connecting healthcare with the experience, skills and insights of patient leaders. You can see my site here; just copy and paste

https://awards.wegohealth.com/nominate

https://www.wegohealth.com/

https://www.wegohealth.com/about-us/

This nomination made me realize I am of value on this earth. I feel proud to have been nominated. Whether I win or not, isn’t the point. It is the feeling that people like what I do. I am helping make someone’s day brighter. I am letting others know I care.

I may not be a paid professional caregiver anymore, but I still am being a caregiver to those who need me the most.

So, who am I? Well, I don’t know all the answers, but I do know that I am still making a difference in others lives.

Below is the nomination I received.

 

 

 

 

 

Each Day We Must be Positive

I wish every day was like today. I had so much energy; I felt like my old self. I rearranged my living room, watered my plants, cleaned the hamster cage and swept. I admit, tonight I have some sore muscles, but I do know what it is from; today.

What is the magic ingredient I added today to be so active? If I only knew, I could cure everyone. I have no idea. I will have to just be thankful for a good day.

Tomorrow after six long months, I go to the dentist for my final fitting of my false teeth on the bottoms. I spent last year doing the same with the uppers. I will be glad it will be finally over.

For three hours tomorrow I will have no bottom teeth, while the dentist makes that final fitting with a much lighter-fitting plate. I should like that. To be quite honest, I hate both of them. The set still feels like I have something too big in my mouth, but my original teeth were bad. Every time I ate, I had to use floss to pick out every fiber of food or I would be in so much pain.

The gums had been receding for some time and the roots were starting to show. I am thankful for no pain any longer. The most embarrassing thing I endure from these babies, is biting into a sandwich. The  uppers begin to slip and I have to form my muscles around them and hold them in place. ( I can’t stand the gummy stuff to hold dentures in, I gag) Pain in my rear, but better than eating liquids the rest of my life.

Friday, I go to my brother’s neurologist and hopefully, I will be told I do not have MSA; just Parkinson’s. The neuro is very smart about MSA and would you believe he examined my brother once and diagnosed him with MSA?

Multiple System Atrophy is a rare disease that is neurological. It breaks all ties during the illness of nerves going from the brain to action. Eventually you end up with a frozen shell, who is very much alive inside. There is no cure. The life span is an average of seven years.

I teach Hospice groups about MSA and I am an advocate for the disease. On my Facebook page, I am very active with caregivers, patients and families. I so wish I could do more, but at this point I don’t know what. I would give my left arm to be able to afford to go to one of the National meetings MSA holds within the U.S., but it takes money to get there and money to spend the night.  My biggest hope ever is to meet a woman is has this disease, but carries herself high and has been a close friend of mine ever since my brother began his journey with MSA. Her name is Bonnie. I want to meet her so bad. She is from Canada, but does make trips here to the U.S.A. Perhaps someday, my dream will become a reality.

My Gift From God

When we wish upon that star

And we think with all our might

We hope that God or angels

Grant our wish tonight.

 

There is so much to achieve

For me upon this earth

I believe with all my heart

This is my gift since birth.

 

I am poor as poor can be

But helping others dream

Makes me the richest of all man-kind

I actually burst from inner seams.

 

A kind word I can lend

A question answered too

Helps others have less fear

It’s what I’m here to do.

Written by,

Terry Shepherd

MSA (Multiple System Atrophy)

MSA. (Multiple System Atrophy)

You have taken many people
To the heavenly steeple.

Here on earth we ask
For only one task
.
For you, almighty one
God, Jesus, your son.

Who is the miracle king
Let freedom ring.

Hear us sing
Provide the key.

For them and me.
Heal this disease..

We shall get on bended knee
And praises will go to thee.

Thank you for your gift
Amen.

Written by,
Terry Shepherd

 

The Autistic Brother

“I want the coke! I don’t want the Pepsi!” Avery yelled with hand motions from the back seat. He had a thing for coke. It wasn’t the way it tasted. He liked the symbol of the coke bottle and he loved the color red.

Avery was born Autistic. He was obsessed with not changing anything in  his life.

https://www.autismspeaks.org/what-autism

 

He loved red. He had his bedroom decorated in red. He wore red Keds. He had red pajamas. He loved red Kool-aid. He was now nine years old and as long as those around him kept his routine the same; he was fine.

Teaching him new things was a challenge; but could be accomplished with much patience and professional training. He didn’t like school very well. He didn’t have very good social skills.

What he did like was spending time with his older sister; but that was a difficult task to achieve. The parents liked Avery being quiet. If others became involved in his life, wouldn’t that cause an eruption in their day?

There was a strong bond between the sister and brother. Some may even say they could somehow read each others minds. Whatever the travel of thought was, the point is that the sister understood.

Tonya played alone or sometimes was allowed to have her friends over. When times arose where it threw the brother and sister together, the two clung together. She read to him. She sneaked him pieces of her candy. She made faces at him and he would laugh.

When she got  older and began working, she would stop and buy him a coca-cola. He would squeal in delight as he took the bottle from her. When the bottle was emptied, he handed it back to Tonya. Tonya would rinse it out and set it on Avery’s shelf that hung on his bedroom wall.

The parents gradually turned the care of their son over to their daughter, as they became more involved in grown-up games. In fact, for some time now, Tonya was pretty sure Avery considered her his mom.

When the parents divorced, Tanya moved her brother into her apartment. She had hired care takers to come take care of him while she worked and when she arrived home, her evenings were spent with him.

Their lives seemed so perfect. A child born normal, a child born with handicaps. Each interested in the other. Each putting the other first. No one could ask for a better relationship than this one.

Tonya was coming home from work one day when she was hit hard from behind, by a drunk driver. Tonya didn’t make it. She died instantly. The care taker didn’t know what to do, so she called the police.

With a chain reaction, Avery was placed in a Disability group home. He was miserable. He acted out. He bit others. He screamed too much. He refused to eat. He didn’t know how to fix things. All he knew was he wanted his sister.

His refusal to eat sent him to the doctor’s, but even with the professional advice, he wouldn’t eat. In less than a month, he was standing by his sister, both holding hands, and they were  smiling and sharing a coca-cola with the red coke symbol on the bottle.

 

http://rmhealthy.com/10-signs-symptoms-autism/?utm_source=Google&utm_medium=CPC&utm_campaign=Google%20-%20CPC%20-%2010%20Signs%20of%20Autism&gclid=CO2BnaW2n9MCFUS5wAodSMgK7A

 

https://www.knowzo.com/health/autism/understanding-the-different-types-of-autism/3220

 

http://www.difflearn.com/product/ALL-PICS-Assessing-Language-and-Learning-with-Pictures/VB_MAPP_Assessment?gclid=CLz5m8i2n9MCFVi2wAodnxwOXw

 

http://www.autism-society.org/get-involved/national-autism-awareness-month/