Walking on the Rough Roads

I have a large interest in people who are going through rough waters who have terminal illnesses. I believe I have some empathy for others and along with that, the fact that my brother suffered from a terrible and rare disease, I am where I am today.

At first, when the patient and family learn of a disease that is incurable at this point, there is not only shock but much talk amongst each other. Very few have heard of some diseases and along with chatter comes fear and questions.

How long will the patient last? Exactly what is this disease and how did he/she get it? Do we need to think about death? Do we need to plan funerals and arrangements? The questions begin to roll and before we realize it, the patient is no longer looked at as our loving family or friend; they are the beginning of feelings of pity and sadness.The conversation of the illness is brought up in many a topics but it is talked about in almost a whisper tone.

As the months march on and new symptoms arrive, people fear death more and more. Some people don’t know how to react to this new side of life and so instead begin backing away, hoping the disease will some how disappear. Some others, will chip right in, offering help and running errands as the patient becomes more comfortable in bed.

Usually the patient is the one who is struggling to make the diagnosis real. They feel fine. Oh, of course they have suffered some symptoms, but they are still pretty good at living life.

It is sometimes easier for the patient to struggle through the symptoms or stages than it is for family and friends to watch the changes. It is sad, I agree, but it happens more often than not.

My suggestions for those who are having to deal with things like this in life is to think about what the patient likes; and what were their interests before the illness came along. Whatever your answers may be, make that a highlight. Visit your loved ones and take a magazine that holds interest for the patient, read to them about their favorite topic, take selfies of you and them, talk about things from the past that will bring smiles and laughter. If at all possible, bring a lunch to them to give the caregiver a break, or if you can, offer to pick the patient up and get a pizza and share lunch at the lake or park.

This is a sad time, I agree, but the goal is not to show the sadness at this time. There will be time for that later. Your goal is to make memories, memories for you for the tomorrows. I can’t stress this enough either; while you are visiting the patient, please don’t stand together with others in the room nor outside the bedroom door and talk about the patient like they can’t hear or comprehend, they can. Did you know that our hearing is the last thing to leave after we die? It is. So although these are rough times right now, live for the now and love life and your family, you will never regret it during these months.

Daily Prompt/ One Word Prompt

DAILY PROMPT

Genie

Write a new post in response to today’s one-word prompt.

 

A Genie in a bottle. The first thoughts that come into play in my mind are Multiple System Atrophy patients, caregivers, families and myself. I personally felt, like a Genie in a bottle.

One illness, five little words, one doctor’s appointment can change everything from that day on. Watching little changes become bigger changes isn’t fun. Helping with falls, recreating meal preparations, setting appointments with various doctors, rearranging rooms, taking out furniture to make room for new furniture, interviewing caregivers, looking at any programs that may help off set expenses. This is truly a Genie kind of life.

Why do I say that? Simple, very few professionals have ever heard of this disease, which makes it difficult to get the help you need. There are improvements on literature, so your power becomes stronger with reading.

Getting insurance companies to understand this is a disease that needs to be covered is a task within itself.  I felt like the Genie in the bottle. I tried and tried, but the top of my bottle just wouldn’t pop off.

What is the best thing you can do if you need help but can’t find any? Join Facebook groups for Multiple System Atrophy. There are several.

This is one of the newest groups I created. A place to feel comfortable enough to speak your mind in private.

https://www.facebook.com/groups/374109256406780/

 

This is one of my older groups where you come to visit, be inspired and meet other families and patients.

https://www.facebook.com/MSAfeelingstressed/

 

This is a group for caregivers. It is an awesome group to find strength and answers in others who are going down the same path as you.

https://www.facebook.com/groups/168770156602557/

 

This is a group formed to learn more about Multiple System Atrophy.

https://www.facebook.com/groups/48942097968/

 

 

This is a group that I love. I found so much support here while my brother was still living. My friends from this group are still my friends today. A wonderful place to congregate.

https://www.facebook.com/groups/MSABuddies/

 

As you know by now, my birthday is this coming Saturday. I need still two hundred dollars to meet my goal. I am requesting a $1- any amount from you, my friends to help me reach my goal of $500.00. Can you help?

https://www.facebook.com/donate/566976957002931/

 

I wish this terrible, nasty, roller coaster ride of a disease on not even my worst enemy. Not only will it change your life forever; there will be times when you feel like that Genie in a Bottle.

 

 

 

 

 

The Survivor

My brother  has been gone  for almost two years next March. My father  and  mother are gone. My half-sister and I  have been apart  from each other since dad died.

I’m  still here. I usually  feel a sense of displacement. Sometimes  I  wish I didn’t  have to live through these empty days . Some days I  can’t  seem to feel grounded. I’m  tired.

I have never felt needed  like I did when I  was  caring for my father  and  brother . It was a special  kind of being needed .  It wasn’t  like when your  kids need you  or your spouse  wants extra attention .

It was different ; hard to explain  I guess. I’m  labeled through my medical  records as having  depression .  I  always  thought  depression  centered around sleeping ,  medications ,  maybe  a little zombie like. I  can pull smiles off. I  can be with  my friends.

Put me in a room by myself, and thoughts of the family  that once was, comes rushing back like flooding  waters . I  just can’t  seem to snap out  of this for good. I  guess the doctor  was right. I have mild depression .

I want to work, but am too unsteady. I  usually  feel in the way or a bother, or the old person. I  really don’t  like feeling  this way. If things get too rough ,  I  will  call my friend and let her walk me out of my sadness.

That’s  the name, sadness. I  am  so sad without  my family. I  have not been  able to fill the void. My grandkids come closest to being a natural  medicine  for me. I  listen to them  talk and giggle and I   can feel my smiles come once again .

Alvin is at peace now. He has no more pain. He is free from the clutches of MSA. My dad is free from his bone cancer and Leukemia. I had no idea my healing would take so long.

I want to go back to the  person I was, but I  don’t  know if or when that will ever happen. Right now I am looking  for small things that bring me peace. I smile when I  see the frost make the ground look snow covered .  I  look at my silver Christmas  tree and get lost in the    memories  of when I  was  a  little  kid, and watched the colored wheel cast lights on  grandma’s  tree. I   think  about  what   it was like being a young mommie.

I  look at me now and ponder on what’s next .  For me, it was more than losing my brother  to an ugly disease .  It was an uninvited , forever  change in my life, which I  am  still trying  to heal from.

Multiple System Atrophy, Together; We Can Do It

I have stated many times in the past few years that my brother died from Multiple System Atrophy. It wasn’t only my brother who passed away. There are many others. I haven’t figured it out exact; but I would say an average of every 1-2 weeks, someone I have chatted with, either a family member, caregiver or friend,  has passed a way.

I am heartbroken each and every time I read of another MSA angel. It brings sadness to my heart, rushing back the loss of Al, my brother. He passed away 3/24/2014. I can’t believe it  has been more than a year and a half; because as of this moment, I can still shed tears quite easily.

The reason for this particular post is to ask you to give up $2.00, or $5.00 or any amount you can give up. Send it to the link below. Help us to find a cure before another loved one is lost.

https://www.multiplesystematrophy.org/fundraising/donation

If you have not heard of MSA, please don’t feel embarrassed. This is why there is not enough funding and this is why there is still no cure. Work is being done daily with fund-raisers, donations. Word is getting out; but we need everyone’s help. Read the link below and tell your friends, family, and co-workers, neighbors; tell everyone and ask them to give up one thing for the week and make a donation to  MSA.

http://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/basics/definition/con-20027096

The link below is a video I made of my brother. He was once healthy, just like your spouse, child, family member or friend. Now he is gone. I miss him. He has left a large void in my life, that no one or anything has been able to fill. Please watch and make a donation. If you want, make a donation in Alvin Miller’s name.

MY TESTIMONY

Back in the day, in fact, I remember it clearly; March, 2011. I was caring for my brother. I thought our lives were so extinct compared to others around us. I thought Al, my brother had it just terrible.

The news of realizing he had Multiple System Atrophy, (MSA) devastated me more than it did Al, with his mental disability, I am not positive that he understood his fate in life as well as I did.

I had begun to pray daily, sometimes several times a day. I prayed out of guilt. The fact, that Al could no longer work nor drive, had forced me to give up my paying job and begin the roller coaster ride for the next three years of taking care of him.

Little did I know that the day God answered my prayer about getting a job that pays, was truly a job that paid much more than any President could ever acquire. Lessons on patience, giving and not expecting anything in return, learning about the routine and how it can and will be broken, are huge lessons that pay more than life itself.

I took care of Al and  God’s answered prayer to begin writing was a beginning of a new life for someone in her fifties. I discovered the talent that God gifted me with when I learned I could write heart-felt, short stories that others connected with.

I learned I could write poetry. I opened up new doors and began speaking to anyone who would listen to me about MSA. My heart opened so wide I began to receive the true message of what love really is.

Love is not really about being with that special mate, or the giddiness we feel when our better half looks at us in that special way. Love is giving of ourselves. Without harming our spirit, we grow, we prosper by listening with our souls to those who are in need of the human voice or touch.

I didn’t know what blogging was. I didn’t believe that little old me had anything worthy to say that could affect another human life until one day I received a comment from another blogger. I don’t remember the exact words. I do know that in a lot of my blogs I write about God and humanity; and this had been one of those blogging post.

This particular blogger had told me that in that precise second he read my post, I had saved his life. I felt overwhelmed. I didn’t think I had that kind of effect on anyone. He told me that he was getting ready in the next few minutes to commit suicide by taking an over dose of pills.

Something he had read in my post had triggered a tenderness that made him realize that he was worth living. I am not God by any means; but I do believe that God answered my prayer. He used me as his tool to help others who are in pain. He helped me to spread the word of God through a blank screen in my own living room. He taught me that money is good, but the word of God, the understanding and empathy for others is much more valuable.

Today, I still struggle. I still have to have talks with God constantly. I  have problems like the rest of us. I have teeth issues that are in need of hundreds of dollars with no dental insurance.

I have gait and tremors that are preventing me of finding a paying job that I can do. I don’t want to worry; but I find myself doing it anyways because I am not perfect, and God knows what is going to happen, and he is going to take care of me exactly at the right moment. Something or someone will happen in my life, and I will not end up on the homeless list, nor will I ever see my refrigerator totally bare.

Today, once again I was taught another lesson. I had to go back and remember why did God have me begin writing? What had I learned by  caring for Al ? What had I learned from those seven years of his illness?

When I worry too much God will show me very clearly that although I can’t see my future, I am very blessed. The lessons he shows me are so clear, I can never doubt that it comes from God.

There is a blogger out here in the world that I don’t hear from too often. He is sick like my brother was. I have come to the realization that he is an angel being sent by God to make me remember how powerful and loving God is. I read the comment and once again, hearing from him, ripped at my seams. Opened the flood gates of tears, making me realize how fortunate I am.

I am so rich in life. God has given me every tool he has to help me become the person he wants me to be. It is up to me, whether I use those tools or not; but how can I not pay attention when the angel, a dear friend, who suffers from the devil’s disease as Al did, writes to me.

This is what I saw, this is what he wrote, and this is how I know that writing is what I am supposed to continue to do. We can’t go wrong when we follow the lead of our heavenly father.

I know there are those who don’t believe, and there are those who question. This post is not to try to convince you. I guess you could call this My Testimony. Here are his words. I want to add to his words, I love you Michael, from one friend to another. In faith we will walk this path together. You are not alone. God is right beside you. My spirit is there with you. You are a warrior my friend.

“Dont want too see people much at all,i dont want themlooking at me .Iam embarassed for them.Iused to love being anywhere with lots of people,now i cannot bear it .I talk quitely and stammer and i have tremmor on my right side .You know the rest Terry.I am still here fighting to stay alive as long as i can.I love the fact you had a bargain today precious Terry.Now other than my wonderful family ,you are the only person i talk to.It is getting so difficult to communicate .Sometimes i dont know who or where i am.Istill think of Al and you whenever my mind comes back,from the horrendous journeys it takes me on.Phisicaly and mentaly exhausted,hurting so much ilook forward to seeing your writings and messages.Al and yourself and what you went through prior to his death have gave me an insight into the dark spiteful .vicious ways this monster kills you from within. .My body and my brain have almost given their all,and i am so ill,keep writing and thinking of Al.You know our love and hearts are always there with you.We wish you nothing but the best Terry,especially for your patience and kindness you have shown me and others.May your God protect you from all evil in our world and love and cherish you for the sweet angel that you are. Michael .”

 

Multiple System Atrophy

MULTIPLE SYSTEM ATROPHY

It scares you, I know

These feelings that you feel

A churning inside

The turning of a wheel.

 

You were always so good

Treated others so kind

So why does this happen

The key that unwinds.

 

I swear I know not the answer

I pray for a cure

I pull in support

Just like a flashy fishing lure.

 

I ask everyone to help

I speak of this every day

I will spread news everywhere

This terrible disease MSA.

 

I know how you are feeling

You feel so all alone

My brother found those days

When the clouds were all that shone.

 

You are not alone I swear

You are not all by yourself

I am with you heart and spirit

Praying for your health.

Written by,

Terry Shepherd

4/25/2015

 

When You Hear the Word, Terminal

 

 

The last thing anyone wants to hear in their life is they are sick. Worse than that is hearing the simple; but complicated word, terminal.
People go through good and bad times in life but manage to pull out of it and move on. When a person hears their life will not get better, the roller coaster ride begins.
Fear is the first feeling people have in common. Anger comes next. Thoughts may include why me or what did I do to deserve this?
Tears will follow with some screaming at God to help them. Once the words of the illness sink into the brain, a new change appears. Patients want to fix the problem. Many will talk to their family and friends. Tracking down doctors and getting second opinions. Suddenly we are thrown into dealing with the physical part of the illness, the full-time job, doctors visits.
Patients constantly discuss with loved ones options they are offered. Together a plan is set in motion and the patient sets these goals as a high priority.
Although they have heard there is no cure, most patients do not give up hope. Some may turn to their God. They may return to church or start reading their Bible.
As the time passes, patients go through various mood changes. Patients can become depressed as they see their independence slipping away. It is important to have everything right in their lives; just in case their hope is taken away and the battle was lost.

Do you have a story that you remember too well? Would you like to share with me?

A Pimple Ready to Pop

A Pimple Ready to Pop

Saturday Al went into a new chapter I had never been through. With all the years of experience, not once have I heard this. The sad thing is it is driving me absolutely crazy.

Let’s call it the hum. The moan or groan. He sometimes can be understood, but only sometimes. I asked him last night who he was talking to and he said God, so I said this is wonderful.

He has continued throughout these days…

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A Pimple Ready to Pop

Saturday Al went into a new chapter I had never been through. With all the years of experience, not once have I heard this. The sad thing is it is driving me absolutely crazy.

Let’s call it the hum. The moan or groan. He sometimes can be understood, but only sometimes. I asked him last night who he was talking to and he said God, so I said this is wonderful.

He has continued throughout these days with the same thing. I feel like I have nowhere to turn anymore. Hospice can’t seem to help. The Hospice minister said he had not heard this done before.

It is still happening today. Al woke up at seven and he started it immediately. He did tell the bath girl that she needed to check his mail box. He told me once that he was going to spill  his eggs from the basket if I didn’t take them from him.

He told the bath girl to put the Playboy channel on TV. I know we have it because I have seen it surfing through the movie guide; but we have no subscription to it.

I just don’t know how to cope with it now. It is from morning to night. He did eat a few bites of sherbet last night and this morning he asked for more. He ate a small bowl.

Is this the way it is going to be? No sleep, no rest? Me having to go hide in my room to escape the constant noise? Am I being a mean sister by not being more tolerable?

Next week Al and I won’t have a caregiver all week. I know in my heart that I can’t take care of him alone. There is supposed to be a respite week now for him and me. He will be going to a local nursing home from Monday-Friday. He will come home  sometime on that Friday and then I will be taking care of him alone until Monday morning arrives.

A big part of me is very nervous about letting him go. He is so fragile. No one will know him. Maybe his moans will cause them to take less care of him. It is a constant struggle for me.

I curse myself because I have Diabetic Neuropathy in my hands. This is the biggest reason I can not care for him alone that many days. The other part of me tries very hard to realize that Angels and God will watch over him. I have to trust the heavens more than anything now.  I realize and I will go see him more often than not.

I have been praying like crazy that God will take Al home before next Monday gets here. I guess I just don’t want the added worry on top of everything else we go through.

Life is good right? God is real, right? I have a chance to have Monday afternoon, all day Tuesday, Wednesday, Thursday, and part of Friday to rest up, laugh again, relax, and recompose myself. So what is the problem? Why is everything getting to me now? Is the moaning  the icing on the cake?

I Feel Too Lazy To Cook

I Feel Too Lazy To Cook

I decided to sneak a few minutes in here and write to all my good friends. I just sent my girlfriend off to Taco Bell with my lunch order. I feel so darn lazy, but the truth is I am dead tired.

Yesterday was not a good day. From the start I had to clean up BM from head to toe on Al. This really didn’t leave me with a Hello, good morning world attitude.After that hour passed by, Al refused…

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