When You Believe


When You Believe

When you believe
There is nothing left
When life has you down
Turn your ears to deaf.

Don’t listen to downers
Keep hope within your heart
Force a smile on your face
Tell Satan to depart.

Yes, what we have is real
We can’t pretend it’s not
When it comes right down to it
Faith is all we got.

Each morning ask for strength
Each night say your nightly prayers
For God is right there with you
In fact; he’s everywhere.

So straighten up and listen
We got this; you hear?
We’ll lick this; you and me
We will not live in fear.

Written by,
Terry Shepherd

 

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Cleaning the Mind


If you have lost a loved one; than you will be able to relate to this post. It is Saturday, and the plans I had made had been cancelled; so I decided to play on the computer. One thing led to another and soon I was looking through old photos I had saved.

These included images I had used here at WordPress, personal photos and documents from several years ago. I started looking at everything, and was amazed at how many sad quotes and sad things I saw on my computer.

It made me sad just looking at these. Al has been gone over two years. I still miss him bad, but I don’t need the images of angels, and death quotes etc. Without thinking further, I cleaned my photos. It took me a couple hours, but after I was finished, I had cleaned my mind of sad things.

I am ready to move on and didn’t even realize it. There are still songs, and coca-cola items and pictures of Al and my parents that can bring me to tears, but I am so much further along in my healing process that a year ago. Christmas is the hardest time for me, so all I have to do now is lean on my family and friends, and I, too, shall get through this holiday.

The painting below, is my latest painting I did last evening.

 

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Truth or Dare


Remember this game from back in the teen days? A chance to laugh, maybe be embarrassed by the truth, perhaps choose a dare. Whatever the case, we were entertaining ideas we didn’t do on a daily basis, and hoping for a good outcome. We had choices.

I have a very close friend, who lives across the waters, whom I was lucky enough to meet when my brother was still here on earth. She became a dear angel friend of mine, someone I could cry on her shoulders through my own weary words on my computer.

Her husband and my brother were thought to share the same illness and this is what drew us together. When a loved one is suffering, especially a terminal illness, drawing near to those who could possibly understand, is where we huddle.

Unfortunately, my brother’s diagnosis turned for the worse. He ended up having a rare illness with a much shorter life span. Today, he has been gone two years. While I still go through my trial of separation of getting used to living without him in my life, I dig deeper into my feelings of understanding as I read the words of my friend, speaking about her life and her husband’s health.

Memories come flooding back. No, it doesn’t make me get any extra sad then I may have already been that day. It actually makes me acutely aware of how she is feeling and perhaps be able to give a comforting word along with my prayers.

Sadly, I have to say that she is now in that roller coaster ride; the truth or dare game of life, that I once was. One day, hope enters, the next day, thoughts of funeral exist. It is a very tiring and exhausting process to go through.

The bad thing about this ride, is there is no time limit on when you may say Truth or Dare? Mother may I get off this ride? Your heart beats heavier and faster. Your thoughts can become jumbled. Bigger tears fall and you dig deep for signs of hope or thoughts of let’s get this over, okay? let me off this ride.

My heart goes out to her and anyone who is suffering through a long-term illness. Sometimes, although rare, lol, I am speechless for words on how to help. I believe the best I can do is pray for the best outcome for everyone involved, keep letting them know they are in my thoughts, and keep telling them I love them.

I love you, my friend, Julie. I pray for calm, peace, building memories, and anything else than can be found in this weekend. Hugs to you.

Perhaps you also would like to stop by and give her an emotional hug. If you feel like you want to; follow this link and say hello.

About Julie

 

 

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MSA/ Parkinson’s/ My Brother/ Family


Who knew that my brother Al’s illness would make such a huge impact; his death. I have my MSA page, which hopefully allows patients and caregivers to come find a smile or maybe get a question answered, or just feel comfort in being in surroundings of those who understand.

I teach Hospices or people about MSA as well as I can. I try my best to be there for others, plus it lifts my own spirits in my days of not feeling well.

Last week, I was approached by a Doctor who wanted to see if I would show interest in a genetic study.

Dr. Vikram Khuran is the name of the doctor. He had been reading my post on Facebook about the possibility of MSA (Multiple System Atrophy) and Parkinson’s being genetic. There is already great concern for these neurological diseases being environmental.

I had stated that I am the fifth person right down the line to have Parkinson’s. There is also suspicion from my neurologist that I may have MSA/C. My father had Leukemia and Parkinson’s. His mother and her sister had Parkinson’s. My brother had MSA/ P.

This is all pretty coincidental, I would say, so I posted to see if anyone else may have these similarities. Well the good doctor took it one step further and asked me if I could venture any interest in others and myself participating in a genetic study or perhaps testing, or maybe both? Do you know someone who lived around electrical towers, lived near crops that were sprayed with chemicals, ever had water issues? Are there more than one in your entire and extended family with a neurological disease? If so, please think about emailing the doctor, expressing interest in this study.

I heard this evening from the doctor that there is much interest. I had made another post informing patients of the doctor’s wishes, and patients are responding in a very positive way. I am just thrilled to pieces.

What if this is the answer? What if this turns out to be a very important key or even better breaks that secret bank of what causes these diseases? Oh, how my mind races and I thank God for allowing me to be my brother’s sister, caregiver, and a huge part of MSA.

I promised you Al, I wouldn’t give up. I promised you I would help find or be a part of a bigger project to beat this beast( as you called it). I can’t admit my heart still doesn’t ache for you. I have to say, I think of you every single day; but maybe, just maybe, Alvin Miller, there is going to be a  positive out of this negative disease.

Below is a photo of Dr. Vikram Khuran.

Here is a link to speak a little about him.

Neurologist Vikram Khurana brings a new perspective to Parkinson’s disease research

 

 

WE ARE FAMILY

We are family
Brothers and sisters you see
MSA is the link
That almost put us on the brink
It brought us all together
To ward us from this weather
We shall connect in soul and heart
Nothing will ever tear us apart.

Written by,
Terry Shepherd

https://www.facebook.com/terry.shepherd1

 

If you or someone you know may be interested in participating in this genetic study; the doctor would like you to email him at; vkhurana@partners.org.

 

 

 

DR.

Help Anyone?


The sun is warm. The skies are blue. It is the new day of the week, and the leaves are out for show on most trees. Life is good, do you see this?

My life is still moving forward and I am having good days along with some bad with my colon. On the good days; I am ready to jump up and down on the bed. When my colon is having spastic episodes, I would rather and do, lay in bed, awaiting a new moment.

I have gone through many days of one or the other type. I have been picking apart my food choices, seeing which ones make me feel worse, better or the same. It has been an interesting and tiring ordeal. With being a diabetic, having a sodium restriction, cholesterol and sugar issue, what is left to eat?

I deal with it though, as hard as it gets some days. The biggest problem for me though is lack of seeing my kids and grandkids. It seems when you don’t see the little ones, and then you do, you ask yourself, how could they change so quick?

The good thing is; that I have a pretty understanding roommate. If I am sick, I can lie around, be myself, and the understanding is a pretty important thing to me. I can get meals fixed for me, and even eat in bed if I choose.

I wrote this post today in order to ask a question to you. Do you use or know of a natural, unharming cleanser or daily routine, so that these bad episodes of spasms occur less? I am not into chemicals, per say, so am searching for something to be able to force things inside my body to act naturally and on their own. Get my point? Any help would be appreciated.

 

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648-01569593 Model Release: Yes Property Release: Yes Parents lying in double bed at home, energetic son (5-7) jumping up and down on bed, smiling, side view

I Don’t Feel This Every Day


I saw a banner floating through my FB earlier and I thought about how many people actually feel like this. The sorrow is the person who feels this more than a few times per week.

I can tend to feel this way; but keep walking the worn path of my old footsteps, trying to do good. I am a born caregiver. It took me many years to figure out that this is God’s talent given to me. When I had children it was my greatest pleasure to take care of them.

Whether it was feeding them or wiping a nose, I loved it. Why? because I felt needed.When my father and brother became ill, it was very painful to watch them suffer; but I was rewarded with many wonderful memories by being their family and caregiver.

Now that I am a public speaker for the terrible disease, Multiple System  Atrophy, it gives me an awesome satisfaction now more than ever to help. You ask why? I have my own gait issues, tremor issues, my age is against me, so being able to answer questions for families and patients, being able to give words of comfort, or place silly or beautiful posts on my page, and have them tell me I made their day, is the best ever.

It is hard to deal with the deeply embedded pain of having people ignore you. We can and do feel alone, sad and sometimes depressed. I have learned that although others may have hurt me, they most likely aren’t feeling it, so the best thing to do is  help someone who you know will appreciate it, and who knows, you may also develop an ever-lasting friendship.

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Thoughts Written Down


The night before last, I was woken to tremors. This doesn’t happen very often. These ruined my night and I ended with about 4 hours sleep. I didn’t work yesterday and it was a good thing. I stayed in bed fighting tremors all day.

The reason I am writing this is in hope of transferring my mind to other things, so I am going to be pretty honest speaking here. When I am forced to lay around a lot, my mind tends to wander to off-beat topics.

I think a lot about how I took care of my dad the year he was dying. I ponder on the things I had to tolerate, mean words, doing things that were not things I enjoyed. I then let my thoughts drift to my brother and I can spend hours going back in time and walking day to day with him while he suffered through Multiple System Atrophy.

In all my years of medical training I had never crossed paths with such an ugly demon as MSA was. When the day came that the good Lord took him home, I had a part of me that was so happy for him, that he was finally not suffering.

The other parts of me fell apart emotionally. All the strength I had retained in order not to let Al give up the fight of hope had finally worn me down. I began to fall in to walls. I blamed it on exhaustion. Panic attacks that I hadn’t had for years, suddenly came back to haunt me over and over.

Through that following year, I felt as if I smiled more, relaxed a little more, cried a little less. Yes, I was healing. The feelings of falling didn’t subside. They continued to show up at times. I blamed them on my being tired. Then slowly the tremors started staying with me more often and eventually I was diagnosed with Parkinson’s Disease.

Doctors told me my body was just drained from caring for people, and that my emotions and physical body were just too tired; allowing Parkinson’s to enter. I suddenly became angry and bitter.

I was out to show myself and others I could still do life. I could work, drive, date if I had a chance, in other words I could rise above this disease. It wasn’t easy. Jobs were not to be had due to my Diabetes and now PD.

I finally landed a job but the tremors and weakness seemed to become more obvious. A cane was introduced then a walker. I became more tired and fumbled through my days until I finally knew inside my heart I had to give up the work thing.

Now I am in my apartment beginning the process of deciding what I can’t live without and can get rid of. Moving in to my daughter’s home brings a certain amount of worrisome with it.

Thoughts of being in the way, messing up another family’s routine enter my mind often. I began to wonder if there really was a God out there. After all how could a God see that I had taken such good care of my family and other patients and then give me these new problems of health.

Finally it hit me one day that God had me right where he wanted me. I had done as he asked. I had been given a talent of caring for others. Now that my brother was gone, my job was done. I am no longer able to take care of others, and instead am  having to rely on others for a bit of watching over.

This thinking turned my thoughts completely around. Now I feel like I am entering the last chapter of my life. I don’t know how long this chapter will last. Hopefully years, but only if I don’t end up in a wheelchair or bed bound, then that will be another sub-chapter to open.

My mind suddenly has shut down crazy thoughts about finding a new companion in my life. I find myself looking at my personal things and pondering on what child wants what. I can’t seem to see any light any where in the tunnel called life. This is it. In a nutshell, I am going to live life in some way until it is over with PD.

I don’t like thinking this way. I want to look at life with  bubbles floating amongst me with some including giggles, and love heart beats, others with quotes of looking towards tomorrow.

A special time of spending with family that may not have occurred otherwise. I am lucky. My kids are not tossing me in a nursing home, so yes, I am grateful; but I am scared too, there are parts of me that feel like I haven’t done all that I have wanted to do yet in life.

Somehow, some way, I have to fight through these depressing feelings and get back on top of life again, but right now I can’t seem to get there. Last evening I was feeling like crap but I had a supper date arranged with a friend of mine.

Oh how I wanted to cancel, but I told myself I will feel no worse there than here at home. I was still feeling awful as we were eating. My friend had her grandchild with her and I was in panic mode that something crazy would happen and I kept emotionally screaming at God to not let me act any other way than normal.

It didn’t work so I ended up taking some special medications that I carry with me for these tremor times. The medicine didn’t make everything go away but it did  help slow down the tremors and I was able to function better.

Although my legs didn’t want to hold me up; but with the help of leaning against trees, poles and sitting on benches, I did go with her and her grandchild to the park and her granddaughter became my model. Except for the weak legs I was able to forget about all the wicked thoughts I have been carrying with me as of late.

I will post the photos later today and for now, I am thankful I made it through last night without falling down. I want to thank-you for reading this and as I said earlier, maybe re-reading this back will help me also. Hugs to everyone, have a good day. Now I have to start sorting this stuff out here at home or it won’t get done.

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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 .”

ballon 2balloonbook 2cemetary day 2

 

Holding Hands


I was just discussing with an MSA( Multiple System Atrophy) patient about communication. When we think of that word, we  think of various things. A handshake, a kiss on the nose, the look of the eyes, the smell of a beautiful scent.

What happens when there is an illness that prevents communication? That is what MSA does. Al, my brother died a year ago from this terrible disease. I worked my ass off thinking of new ways to communicate with him as the illness took over his body.

Flash cards, blinking of eyes, a squeeze of a finger. It finally got to the place that all the communication I had experience with, had failed.

What do you do when you get to that point? There is technology out there that with digital ability will enable someone to still use a form of communicating. The issue with this is cost.

For Al and me, we learned over the 7 years of this illness, that the disease in itself is costly. We weren’t in a place that there were thousands of dollars laying in a bank so that we could use this new gadget. I wish there had been.

I did what I knew best, which was use a free form of communicating. When Al could no longer blink an eye, turn his eyes, lift a finger, move any body part, we used the strongest and best device we had left to us, our hands.

You see, even though Al and many others who suffer from this type of disease are frozen in spot, the memory and mind are still in great working order. Can you imagine how frustrating it would be to want to say something but can’t? What if his nose itched? How would  I know?

The last two months of Al’s life, he lay motionless. I cried inside. Once in a while I cried in front of Al, because I am weak. I am a Taurus and maybe it is true what the books say about us. We wear our feelings on our sleeves.

Al would stare straight ahead, but I would see an ever so slight movement from him when I cried. I knew it hurt him to see me hurt; so I tried to keep my bright, smiling face on when I was with him.  I know it is going off track here, but I will never forget  how Al and I had our disagreements. We yelled sometimes, he walked off on me a few times, but when someone is so sick as Al got with MSA, you just let all that slide off of you. Suddenly, you don’t remember any of the bad crap, all you see is pure love.

Well, back to the story I was trying to make a point with. For me, I held Al’s hand. I held it a lot. I was able to tell him I loved him. I could let him know I would not leave him alone. I could let him know I would do anything for him possible.

Our hearts spoke, our souls remained bonded. Al understood everything in that one free communication; holding hands.

yellow 8Photo taken my me.

 

I hate this disease. If you or anyone you know  has MSA, please never hesitate to look me up. I am here to lean on, cry on, scream at, or just listen. You can also visit me at my Facebook page for MSA. There you will find other patients to become friends with. There are beautiful flowers, uplifting quotes, some funny animals to make you smile, and of course, me. I am there to listen while you talk.

 

https://www.facebook.com/MSAfeelingstressed

 

Life After My Brother Al Passed Away


It is almost noon here on Sunday morning and my body shivers. It isn’t because my body is so cold. It is because my emotions are running very high. You will probably notice more posts on the topic of my brother, Al Miller as it nears March 24th. It will then be one year since he left for heaven.

I am divided by sane and insanity anymore it seems. Part of me wants to break down and cry tears of a river like I haven not done since he passed away. My other part of my thinking is, it is alright, don’t have a breakdown, you are just missing him.

I took care of Al day and night for 7 years. He and I fought together the terrible Multiple System Atrophy he had but God won and took him  home. You don’t know how many times I repeat the words, he is better off, he is better off.

My health took a turn for the worse after he passed. Mentally and physically I have fought my way back. I don’t know how others bounce back but it really doesn’t matter. I listen to what people say but in the end it is my battle.

Maybe I am a stand-still woman. I seem to struggle with things that happen in my past. I think about how much I miss my kids back home. I miss seeing the grandchildren taking their first steps and hearing their first words. I miss all my friends.

I miss walking into  Al’s old room and just sitting on the floor feeling his presence. I think about how bad I want to go to the cemetery and sit one more time beside Al and my parents.

I struggle with being here in Kentucky. Life has moved very slowly since I have been here. I have found no work, no friends. I have my family here but there are days even they are not enough to hold me together.

I want to go back. I scream it some days, I want to go back. I want to care for him again. I want my parents back. I want my life back. I don’t like who I have become today. I am sad more than not. I struggle with silly posts that I write not to lose my writing completely.

I want to see sunshine again. I want my soul to spark. I want to be thankful that I am alive. Then I turn to God and beg forgiveness for feeling the way that I do. Sometimes I think I am half sane and the other half I am insane.

My heart was broken and it just won’t repair itself completely. I miss everything that once was. I miss you Al.

Here is the song that was played during his funeral.

 

 

 

 

 

 

 

 

 

 

cemetary day 2oct-13-13