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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Envelope Pushers

http://dailypost.wordpress.com

When was the last time you took a risk (big or small), and pushed your own boundaries — socially, professionally, or otherwise? Were you satisfied with the outcome?

 

The last thing I did that was outside the box of what I do normally is write two books and publish them. The first book I wrote, called Dahlia, is an inspiring story. I thought it so well related to today’s living. Problems arise and we can make one of two choices. We can stand tall and break through the rocky road, or we can give up and move towards something else. This is what this book is about. I have had quite a few compliments on this book which made me feel pretty good.

 

The second book was written while my brother Al was going through the struggles of MSA. I finished the book soon after his death. This is full of Al’s story of his life and how we dealt with the horrible disease, which is quite rare. I wrote this book in hope that other families and caregivers would not be in such fear as they walked with their loved ones through the different stages.

Both of these books can be purchased through Create Space or at Amazon.

I am disappointed with my second book. The book is alright. It is the hope that I lost from writing the book. My hope continued to the point where I hoped to teach others through a class or have professionals want to read it. I feel like I have not carried on Al’s name by helping others.

There is so little known about this terrible illness, but the ones who are familiar with it; the ones living through it, I wanted so much to be able to help them.

Oh How I Miss You So Today

Can you believe that it has been seven months since Al died? I know I can’t. Life goes round just like a merry-go-round. People don’t forget Al, but life throws more issues that seem to pile up and months slip by.

I was thinking of him so much today. Last year at this time we were struggling so bad with Al getting up and getting dressed and ready to get on the bus to take him to Day Care.

The Christmas tree was up and lit but he didn’t care. My heart has been hurting so bad today for missing him. This coming Halloween will be one year since Al last went to Day Care. He told me he was just too tired to go anymore. From that day forth he became bedridden.

I suppose I am acting normal; probably like anyone else who has lost a loved one. I see myself acting out the days starting now and I wonder if I will continue until his first anniversary passing.

I have a small video that I have kept tucked away. I played it today. Although it is only 20 seconds long, I wanted to feel the pain. Does that make any sense? I needed and longed to feel him near me.

I never wanted to lose him. I needed to cry today, so this is why I played the video. Hearing his voice is so important to me. I can’t hear my mother’s voice anymore. She has been gone 14 years. I have to strain to  hear my father’s voice and he has been gone 8 years this December. I didn’t want to lose Al’s voice.

On the video I am not even sure he knew I was recording him. I went in to check on him and he was talking to God. The video plays only the words of, God take me home over and over. Oh buddy, I am so glad you got your answer. You are home, safe and free of pain. You fly with golden wings for being so strong and fighting MSA until the very end.

I miss you so much. I may not see the illness in my new home, but I can see and hear your voice. Tonight, I feel so terribly alone. How can the world keep moving when I have days when I am standing still, looking over his bed, and knowing his soul had risen to the heavens.

I miss you so much it hurts. I will see you soon dear brother. I will see you soon. Love you bud.

How To Purchase My Books Dahlia and Al his life and MSA

I just wanted to update you, my friends. My new book titled, Al his life and MSA is available now through Create Space and Amazon. In a few weeks it will be available in the UK also.

If you would like to purchase it through me directly and have it signed by me, I won’t be ordering any until I get moved so the books will come to my correct home address. If you buy either of my books, the one I mentioned here or Dahlia through me you will be purchasing it through PayPal.

The new book has a trickle effect. It starts here in US and trickles to outer countries. I hope this helps calm any confusion on why you can not order it from me right away.

Thanks my friends. You can order Dahlia through me immediately as I have some copies with me now. Dahlia is about a young lady who wants to be a dancer. Like so many of us she runs into snags and has to decide whether to give up or keep going in order to make her dream come true.

 

For Al his life and MSA, here is the link to purchase it

https://www.createspace.com/4994631

 

For the book Dahlia, here is the link to purchase it.

https://www.createspace.com/4694526

 

For Dahlia through Amazon, here is the link.

http://www.amazon.com/Dahlia-Terry-Shepherd/dp/1496115236/ref=sr_1_1?ie=UTF8&qid=1411429457&sr=8-1&keywords=Dahlia+by+Terry+Shepherd

 

For Al his life and MSA through Amazon, here is the link.

 

http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Al+his+life+and+MSA

 

 

Tribute to the Day of MSA

I went outside to leave and as soon as I opened my door I saw this little cutie. Next, I looked up and saw this. Lastly, I want to introduce you to my second published book. It is available at Create Space or Amazon.

https://www.createspace.com/4994631

 

 

The Book Signing

This gallery contains 8 photos.

Well tonight was First Friday downtown. I kept debating whether to go or not. The chance of thunderstorms was high about the time the event was to start. The sun was out when I decided to go ahead and leave. … Continue reading →

Looking for Editor and Publisher

The book I wrote about my brother Al is one of the most important projects I have done recently. Although I am very proud of Dahlia, my first book, this book is way up on the ladder.

MSA was and remains the most wicked illness I have ever run into in my 23 years of being in the medical field. I went through many emotions along with the terror and pain of watching my brother slip a way from me.

I wrote this book called, Al, his life and MSA, not to brag to show I could write another book. I didn’t write it for popularity votes. I wrote it for a teaching tool. There are so many questions and no answers. There is research but, but research takes dollars, so  it doesn’t help a whole hell of a lot when very few even recognize the words, Multiple System Atrophy.

Ever changing circumstances, day-to-day, sometimes hour to hour. Various side-effects unlike any cancer.

My goal is to have a publisher do his thing with my 31 chapters. I self-published my first book, along with my dear friend Diane. It has sold but I want this book to be in doctor’s offices, medical centers, neurologist’s hands.

I know I am dreaming big, but why not? What do I have to lose by following this dream? A book that sits on my own shelf collecting dust when it could be in the hands of a family or caregiver’s hands.

Please, help me along with my prayers to locate a publisher who has compassion, heart and an inner soul who wants to help spread the word of one caregiver, a sister and the journey of MSA.

I may want to add a special note here for the sake of others. I have not located a job as of yet, so I can’t afford to pay hundreds of dollars to get this published, but I will do my very best at doing what I can to help get this out. Thank-you. Please, please share this with someone you know who may have some personal contact or interest in my goal.

Chapter 31

Al was not sleeping too much. He lost interest in the TV. He enjoyed hearing us read from the Bible to him. He no longer could listen to the ear phones because of the damage to his ear.

His skin became sort of see-through color. His nail beds had been gray for many months but now his hands were turning grey. Nurses and I always checked his feet because sometimes as death appears the feet will change in color.

I would check Al over with a fine tooth comb. I prayed for him to go to heaven but I fought for my own selfish reasons he would remain with me. I barely slept anymore. Except for the caregivers I took care of Al myself for these past seven years. My own body was fighting in a survival mode. I was always and will remain ever so thankful for my best friend Lezlie, who came to stay with me. I am not sure how long she stayed but it was several weeks. This allowed me to vent, and cry and try to rest.

My heart squeezed so hard for I knew in my soul Al was leaving me. There were two times that I mentioned to you earlier that Al spoke to me. I have no doubt that God allowed this to happen because I needed to hear what he had to say.

The first time was when I was in the living room. I heard his voice and I about tripped over myself from shock that he had spoken and raced in there. He said, ” Do you see him?” I replied, ” No, I don’t see anyone.”

” Right there, right beside you, Jesus is here. He says it is time to go home and to tell you that I am going to be alright.”

I grabbed his hand. Oh please hold on a second as I wipe my eyes. I can’t see the words I am typing. It is so fresh in my mind and my heart is  not yet healed. Alright, I am back. I took his hand and held it and I spoke for the two of us to God. I thanked God for getting Al and me through this. I thanked him for keeping me strong.

Al was very concerned about his coca cola and car collection. He begged to die but he was fighting it not wanting to leave his possessions behind. I told him, You take with you whatever you want bud. God will make room.” I think this made him feel better.

Pastors and Hospice staff, and myself tried several times to help Al pass on to the other side, but he was afraid. He didn’t know what to expect, but do any of us? Ideas had been exhausted. I believe that God planted an idea in my mind.

With Al’s mentality I went to his bedside. I told him I wanted to explain something to him. I started saying to him, ” You know how you and I always took our vehicles into the garage to get their oil changed? Well this is what God wants you to do. Get a body change. He will heal you bud, and make everything new.”

I saw tears flow down my brother’s eyes. I knew I had said it in a way he understood. Al cried and I cried. I sat with Al for hours, just holding his hand. I had Christian music playing in the background, and when he seemed tired of that I would put his favorite movie in the DVD player, A Christmas Story. Al would listen to that over and over.

He seemed to drift off so I left the room. I could barely walk from exhaustion and stress and my aching heart. I had sat down for about a half-an-hour when I heard his voice the second time.

I walked in to his room and stood by his bed. I picked up his hand and gave it a kiss. He looked right at me and said, ” Sis, I know that you took good care of me. I appreciate it and I love you sis. You should always remember that I love you.”

I bawled like a big baby. All those seven years I was never sure if Al saw me, his sister, or his dad in me. We had struggled as I said in earlier chapters, so when he said this, it was the best gift I  had ever received. I couldn’t let got of his hand. I just kept stroking it. He drifted off to sleep once again.

I sat with him for a while and then went back to the living room. My friend was asleep in the bedroom and it was very late. I decided to rest on the couch. I dozed off and on. Every time I woke I went in and checked Al.

The skies lightened up and day break had broken. I got up and went into check on Al and he was gone. My brother was gone. I just broke into the biggest sobs I had ever experienced. I stood by his side whispering to him how much I loved him.

Today, it has been three months since my brother passed away. My heart still feels a huge void and my home is very quiet. Friends have appeared and am helping me to get back out into the world, but it is hard. Sometimes I can go out and do pretty good. Other times I can’t and I come home to cry in my pillow. By the grace of God and my family and friends, I shall get through this. I will never forget my dearest brother, and I will never forget what a cruel illness took his life. My purpose of writing this book is to help others to not be as afraid as I was.

Changes happen quickly. You can not count sometimes from hour to hour what will happen. Make sure you tell your loved ones how much you care. Talk about the good things. Talk about the memories you shared together. Remember, the memory is not touched by MSA.

I love you buddy. I miss you but I know you are saving a spot for me in heaven, just like you promised.

Chapter 30

Now that I have told you where to go to find more information on MSA, I will tell you my personal experience with Al, my brother and what MSA did to both of our lives.

I was able to handle and I believe Al was too, most of the daily changes that happened along the way, until he became bedridden. The disease had already progressed pretty quick in my eyes but now we were not prepared for the fastest roller coaster in the world effect.

Bedridden was something Al fought. He wanted to get up but we had shown him it was not possible. Hospice had brought him a regular hospital bed and after a few weeks of being in bed all the time Al started getting sores.

He was changed in positions every two hours and sometimes every hour but his skin was breaking down anyways. All caregivers, including myself put lotion on him twice a day. We paid special attention to the elbows and heels of the feet. We used as many pillows as possible because if you use too many on an air mattress, the mattress can’t do its job; but we were fighting a losing battle.

Hospice thought it was time to protect Al’s skin so they suggested an air mattress. It was a little bit of a challenge though. Al could not sit up or help in any way to make the transition of mattresses, so the fire department was called.

We told them when the new mattress would be delivered and they arrived precisely at that time. With the help of four firemen and us caregivers we were able to hoist Al into a Hoyer lift. We sat him in his lift chair and everyone went to work quickly to change mattresses.

Al was so weak his body curled up into a ball in his chair and he began to fall forward. A couple of us hung on to him to save him from injury and in no time Al was transferred to his new mattress. I was so thankful for these guys help I couldn’t say thank-you enough.

Al was not able to eat the foods that he needed to keep the skin healthy. By now he was eating mashed potatoes, puddings and ice-cream. Al craved sherbet. It seemed I couldn’t  keep enough in the freezer. Sometimes volunteers from the community brought some over.

I think the cold foods felt good on Al’s throat. When he swallowed he reminded me of a turtle in the way his head and neck moved. I was concerned because although  he was a mild diabetic, all these sweet treats may cause his sugars to rise sharply causing him more problems.

Hospice assured me this wouldn’t happen since he wasn’t getting that much food at this point. From that moment of relief to the end of his days I gave him anything to eat that he could swallow.

His head had turned on its side and was locked in position. It was so tight in its place that it made it very difficult to shave him.  His ear didn’t get the air it needed so it became infected, with the disease eating a hole in his ear. We had Hospice medicating this daily, but it never left.

Al was not able to communicate any longer by talking. I do remember there were two times in the very last parts of his days that he by the grace of God spoke to me. He could sometimes still blink, although only half-blinks, it was a blink for yes or no answers.

He could no longer move any part of his body. He had a catheter at this point and after having this inserted for a few weeks it started to become infected. I think this is when everything started to go down hill  fast.

The normal process of catheter care is to totally change the tubing and bag one time per month, with bag changes made more often, but I wanted  the tubing changed more. You ask me why? The answer is with the naked eye we can not see what is going on inside the body. We can only guess or assume.

One of the times the catheter was to be changed, the tubing would not come out. Each time it was attempted, Al would moan in pain. I cringed in fear and my heart melted for the brother I loved so much as I wondered how they were going to manage to retrieve it.

With as much patience as possible and gentle nudges the tubing end on the inside of his penis did release, but it tore some tissue and the blood in the catheter bag appeared and never left for good. Hospice did its best but the MSA was boiling inside of Al.

I believe that Hospice felt if they were to change it more often, which is what I wanted, that there was a much higher risk of infection for him. I understood what they were saying but I stressed each day because I didn’t want Al to have to go through any extra pain.

Al was on high doses of pain medications which in turn caused constipation. It just never seemed to end in my eyes. I know it hurt him because when any of us would attempt to roll him to the opposite side, he would moan in pain when we placed our hands to close to the  abdomen area.

Many times after I left his room I wept. I prayed for Al’s release of this terrible disease. When I thought nothing could get any worse, it did. Al could no longer eat the baby bites of sherbet. He could no longer use straws or anything I would try to get liquids inside his mouth.

i began to use syringes to give Al a drink. It had to be done very carefully and ever so slowly. He would choke if I gave it to him at any speed so slow was the way we went with everything for Al from that day forward.

Chapter 29

Each day Al got weaker, not only in body but mind. He was becoming confused. He complained a lot of not being able to see well. Twice in six months I took him to see his eye doctor and I heard the same thing each time.

The muscles behind the eyes were not able to focus as well as before. This was causing poor vision. With Al’s other medical problems there was nothing the doctor could do for him.

I could do something for him though and I did. I invested in a much bigger television for him. Every Sunday that I can remember,  Al  read his Bible, so I purchased him the largest print Bible I could find.

My heart just melted when I received the biggest smile from him. He could read it and he loved it. Al was a very routine guy. I think most of this came from his mentality. He had grown up going to church and Sunday school on Sundays so when he could no longer go to church we both began to watch Joyce Meyers and Dr. Charles Stanley on the television.

Any other day of the week he showed no interest in God. With the illness quickly progressing I knew that it was time to try to change his view on routine. I explained to him that Joyce Meyers was on the TV six days per week. I told him, ” Bud, you even have choices. You can watch her in the mornings or in the evenings or both. Dr. Charles Stanley comes on twice on Sundays here. You can watch him in the  morning and in the evening.”

He seemed to like that idea and so each day I would turn his station to either him or her and gradually he also began to read his Bible daily. I really didn’t have that much to do with all of this grand plan in his life. Al was able to read his Bible for a couple more months, and then I began to read to him since he could no longer focus. God helped life to become tolerable. I began to do something I had never thought of to do before.

 

I was determined that each day I would find something good about it. Whether it was seeing the sun peeking through a cloud or just watching the squirrels in our yard scrambling to find a piece of food, I would notice and I would smile.

By now, Hospice was involved. The waiver that had helped Al to come home provided help for me to care for Al. The illness was so strong that for a few months before Al passed away, I only went outside the house once a week and that was for groceries.

It is truly amazing when I look back to just a few months ago and see how much God had a hand in our lives. I had lost my father back in December of 2007. I began to care for Al in January of 2008, after his heart attack. I never began the mourning or healing process from our dad passing. I went straight to caring for Al.

It was a whirl wind of a life. It seemed that I had lost many friends from being inside so much and being out in the social world had vanished, but God sent angels to me and Al. Our caregivers were wonderful. Gina,Stacy and Faye were so good to Al and they cared and listened to me and held my hand while I cried.

Hospice came twice a week up until the last few weeks. They seemed to care about Al so much. His favorite nurse that came, Al had known for so many years. Hospice had many patients to handle, so they were never here long enough for me, but hey, I wasn’t the patient, but I felt like some days I was cracking up from his pain.

The Hospice always made sure Al had all the supplies that he needed. One thing about MSA is; it doesn’t sit still. The stages move very quickly. I would just get used to doing things one way, and boom, I was having to learn something new or a new way of handling the situation.

Al suffered from catheter issues, almost being blind. He went from feeding himself, to using heavy-weighted silverware, to finger foods, to me having to feed him. Then we went to mechanical soft diets, then to foods that consisted of soup, ice-cream or puddings.

While the MSA was moving forward and I could see so much on the outside, his insides were worsening also. He had big issues swallowing. He would try to swallow but the muscles in the throat were not working properly, so choking issues became huge. This is why the constant change of foods.

Being on such high doses of pain medications caused terrible issues with constipation. Every day he or I was asked if he went and more often than not the Hospice nurse would have to help Al to clear the bowels.

Al’s body became stiff through time. His limbs would not move with his help. Somehow the tremors always were able to move though. I remember once for a short spell Al wanted to get out of his bed. He had been bedridden for about a month at this time.

He begged and begged. One day when the caregiver was there she and I decided we had to show Al that he could no longer get up. She and I got on each side of him and sat him up on the edge of the bed.

All of us were scared as we watched Al’s body flop around like the commercial on TV where the fish is out of water. He had lost all control. Control of his urine, bowels, eating, just about everything he could ever do, he could not now.

She and I quickly laid him back down and got him covered up. I asked him, ” Do you still want to get out of bed?” He said softly, no, never again.