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.

It Is Alright


death 2

Walk into the light

A subject matter, most don’t like to think or talk about. I know I was one of those people. Life is for living, not pondering on death. My daughter has told me a few times, that she is tired of hearing me speak of this matter.

I truly understand her point. Who wants their work, or play time interrupted by such morbid thoughts? Who wants to actually think for a second about losing a loved one?

The problem is getting through and over death. When my father became ill, and I started taking care of him; death was not in my vocabulary. I knew, without a doubt, that modern medicine, a loving daughter taking care of him, and God, would never allow death to enter our lives.

When my mother passed away, it was a true shock. She died suddenly after being a vibrant, healthy woman her entire life. I have lost all of my grandparents and many aunts and uncles, and a few friends; but it seems this was put into an entirely different category.

When a spouse or parent and my own dad died, I wonder even today, after nine years, is he really gone? Can’t I go out and see him or call him? When within a week of laying dad to rest, my brother had his first heart attack, it began to become a reality, that death was real.

I didn’t go into my brother’s illness with the same outlook or hope that I had with my dad. Number one reason was I had been awakened to the fact death could happen. Number two reason; MSA is incurable. What a nasty word that pops up in our dictionary.

My goal for my brother was to get involved. By this I mean, be involved with all physicians who could help or understand. Be active in all Facebook groups that held information and hope about Multiple System Atrophy. To speak to anyone and help them to understand what MSA is.

I did this and I still am active in these groups. There will be a cure, I have no doubt, but in the mean time, some will lose their battle, and join so many other warrior angels in heaven.

There are so many diseases with hopes for a cure. I will never understand why God doesn’t fix it; but I believe he has his reasons. My theory is, the good person living here on earth is needed by God more desperately, than we do.

Because I have suffered physically and emotionally from the tragedies of caring and watching my family pass away, I want to speak to you on a personal level.

It is alright to fear; but place that fear in God’s hands. It is alright to cry; it releases stress from the body. It is alright to reach out and pray; even if you have never prayed before. It is alright, to begin visiting loved ones more often and sharing the good things about  life. It is alright to carry hope, even though you had no reason to hope before. It is alright; to accept a friendly, helping hand. It is alright to grieve; by spending time alone, calling a friend, weeping many times. It is alright; to forgive yourself, family, friends, and by standers. It is alright; to yell, scream in desperation.

Death is not a fun thing to go through; but it is a necessary task we must face. It is a part of life. I wish I would have seen the words in bold prior to losing family and friends. I may be much further along today in my healing.

 

angel

 

I Feel Like the Odd Ball


I fell a few days ago for the first time. My gait has been bad for some time, and always feel like I am going to fall; but don’t. I didn’t expect it and I didn’t get hurt either; so I was lucky.

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Today, I decided to make some bean salad and potato salad. I had previously boiled the potatoes last evening, so all I had to do was cut, dice and put together. I boiled the eggs today and after cooled; I made the two dishes. I thought they were perfect for this hot, humid day.

I suppose I was standing for about half an hour or so making these two edibles, when suddenly, I felt weak and the Parkinson’s tremors kicked in. Fortunately, I was almost complete with my task. I cleaned up everything and put the dishes in the refrigerator.

My heart suddenly sped up and I knew if I didn’t lay down; I was going to be on the floor again. At this point of this disease, I have a pill I can take to try to calm the tremors down, so I grabbed a bottle of water and swallowing the pill; I laid down with the fan blowing on me and waited for it to take effect.

While waiting, my mind drifted back to my brother. I usually think of him daily, along with my parents; but some days, I think of Alvin so hard, my heart aches terribly and tears well up.

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I thought back to how he ate so much sherbet the last week or so of his life. Oh, he didn’t eat a lot at one time; but this is what he always wanted. A few sips, and he was done. Multiple System Atrophy/ Parkinson’s had really done a number on him by then.

He could barely swallow, speak, he couldn’t move at all. It broke my heart watching him go from a 285 pound, smiling, young 59 year old man, to a withering, small, 145 pound shell. This is where today, I sometimes feel like the odd ball.

His illness brought out all the compassion, empathy, sympathy and every other emotion a person can carry while taking care of him. It never left. I still carry it with me. I believe this is somehow a small reason that I changed, and will never return to the Terry I once was.

As I lay on the bed, and I listened to the petty talk on the TV show, as I thought of all the people glued to their cell phones, or computers, or whatever item they can’t be without; I realized, it is cold to me.

There is nothing for me without being able to use these strong emotions; that makes me feel content. There will never be another emotion that will stir me up more than helping, sitting, watching, or caring for a person who needs someone. I have a gift, I believe.

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I can feel what they feel. A sense of desperation, a feeling of hopelessness, sorrow, tears, and yes, even sharing a giggle or two. It dawned on me as I was laying there waiting for the medicine to kick in, that this is why I see things so different today than before Alvin got too ill. Between he and God, I learned many lessons. Now if I could just figure out how to use this to my advantage, and yet have my tremors hold me up, I may feel content once again in life.

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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.

I don't feel

Dedicated to Alvin Miller


 

Living without you

The hardest task of all

Days turn into weeks, then months

And still I stand, I fall.

 

Memories of you in my mind

Thoughts of you every day

I just wish I could turn back the time

When we would see the day and play.

 

Things that mattered once

Don’t seem to count to me

Sometimes I just see blanks

On a paper I write; he and she.

 

What I wouldn’t give for this moment

To see your face once more

Where pain is separated from us

Where there is no heaven’s doors.

 

It’s almost here; the date

You left this life for good

I am taking step by step

But life’s not as it should.

 

I hear your cries of pain

Your desperate plea to be free

I carry this photo in my heart

As close as close can be.

 

I know that you are healed

From M.S.A. the beast

I know you are with God

Full of smiles and gentle peace.

 

I have to remind myself

That where that light had shone

Could once again shine for me

As I will never walk alone.

 

Written by,

Terry Shepherd

03/14/2016

 

Multiple System Atrophy, The Hell Disease


March is Multiple System Atrophy Awareness month. Many of you already know my brother, Al, struggled on a daily basis with M.S.A. for seven long years. It was the most wicked and horrible disease I had ever seen in my 25 years of working in nursing.

I wanted to post this to remind each of you to appreciate those in your life. You just never know when something dramatic like a terminal illness will come knocking at your or their door.

If you have been thinking about making an important donation to a group, please consider M.S.A. Do it in the name of my brother, Al. He will be gone 2 years the 24th of this month. I will even provide you the link. If you choose to do this, I will be thanking you forever. Let me know, so I can give you a big hug.

Why Donate

 

 

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Write About a Time When You Felt Loved


https://magicinthebackyard.wordpress.com/2016/02/01/hello-february/

I write for Kellie Elmore, and it is a pure joy.

 

Feb. 17th,-Write about a time when you felt loved

 

I have told this story too many times; but here is an opportunity to tell it once again, for Kellie’s prompt.

My brother had Multiple System Atrophy. It is a terrible disease with no cure. His body started out with tremors, then falls, a cane, wheelchair and then bed bound. During this process, he lost his ability to communicate by mouth, or other variations I could think of.

Eventually, he ended up in his bed, unable to move any muscles. The one muscle that he needed the worst, was the heart, and it eventually stopped also.

Al, my brother, had issues. He was mentally challenged and he had always lived at home with our parents. Our father didn’t understand my brother very well, and a lot of times it was easier for the two not to be together too often.

Communication was not very good between the two, and there was love between father and son, but it wasn’t shown near enough. Our mother passed away, and then it was dad and Al.

Then dad passed away, and then it was me and Al. I took care of  him those seven years while we fought together the MSA. Al tended to look at me as some big boss. I hated that because I wanted him to see me as his sister. He saw me as an authority figure, and transferred his ill feelings from his dad to me.

All those seven years, I spoiled him rotten. I did everything in my power to show him I was not dad. I tried over and over proving to him how much I loved him. I never really knew how Al felt about me, and it disturbed me so very much; especially as his death was something we could not avoid coming.

As I said earlier, Al lost all muscle control. We don’t think about what that really involves, so I will add a few things it changed in his life. He couldn’t speak, he couldn’t move his head, arms, legs. He couldn’t blink or squeeze my fingers. There was nothing to signal except the rise and fall of his lungs.

I pretended that he could hear me. I refused to believe he couldn’t. You see, with M.S.A. usually the memory stayed in tact. I was told he probably would never forget who I was to him.

We went for several weeks with me reading to  him, watching TV with him. I knew he couldn’t see the TV, but I was pretty sure he could hear it. I rubbed his hand and told me how much I loved him.

One day as it was nearing a few days before his passing, something major happened in his and my life. Al spoke. It wasn’t fog; it was clear as a bell. He opened his eyes, which I hadn’t seen those baby blues for so long and he looked right at me.

He said, ” Sis, I want to thank you for being my sis. I want you to  know that I know you did everything for me you could. It is time for me to go to heaven. Remember one thing for me. I love you sis, and I will save a spot in heaven for you”.

I am crying as I write this. Those words meant more to  me than probably anything else in this world except the birth of my three children. The burning question that had kept me up for nights upon nights and had stressed over for so long, had been answered. He loved me.

I miss you brother dear. I will see you soon.

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My Brother Dear


There is never a day I don’t think of my brother at least once. This time of year, I think of him more often than not. I can’t help myself, and I am tired of trying to hide my feelings, so I am posting about him today, and I probably will as it gets closer to March 24th, the day he left and went to  heaven , almost 2 years ago.

 

I knew you were ill

My brother dear

Because of this

I made plenty of decisions

That may look stupid

Or silly to others today.

I wanted to show you

Over and over that

Your life was not

A complete loss.

I wanted to share

Everything I could

With you, anything

To make you smile.

I may not be in the

Best situation today.

I may have to

Scrape and get less

But my memories

Of your bright eyes

And that huge smile

Touch my heart

Deeper than anything

In this world.

I don’t regret a thing.

I am so glad I was

Able to share and

Take care of you

Those seven years

While we fought

Together through

M.S.A.

Oh, how my eyes

Can still seep

Tears of sorrorw.

I miss you bud.

I will love you forever.

And you will always

Remain close to my heart.

Written by,

Your sis, Terry Shepherd

02/15/2016

Just Saying


I haven’t been on for a few days due to moving. I moved back up north into my son’s home. As I get older, this moving stuff is getting to be a pain, and takes it out of me; but I got through it.

My car which had some major issues,  had a great deal of money spent on it, but with no guarantee it is fixed. I made it the six hour trip with no issues, so I am giving my thanks to God for keeping me safe.

I have been released from the fear of two doctors suspecting I had Leukemia. Upon the third month of blood work, I was told I didn’t have it after all. Another thanks goes to God. I am not ready to die yet, but hopefully, my belief in God is strong enough, so when it is my time, I am going to a better place.

Do you notice as you get older, your beliefs change a little? I have noticed it for myself. What once was funny is not now. I used to be able to swear and not even blink an eye. I don’t do that any longer and I don’t care to be around those who do. If I say something I feel is wrong, I immediately ask for forgiveness.

My music taste has changed. My taste buds have changed. Some things I have thought were so important, just aren’t anymore. What about you? What have you noticed about yourself?

Yesterday and today, I received gifts that I had owned at one time earlier. It felt good to see these items, and took me back to times that I really was enjoying the younger me. I used to laugh until I almost wet myself. I used to be a talk-aholic. Today, I am much more quiet.

I sometimes think it is my age. Other times I believe it is things that have happened in my life that have changed me. Then there are times, I ponder on what people say and end up making a blog out of it.

I have two published books, Dahlia and Al his life & MSA. I finally got the courage up to blunder my way through my publishing company and now these two books can be found on Kindle. You can still get them in print, but Kindle is much cheaper. So that is something I did just for me.

Today, I joined a site that I am able to sell my photos online. Now, whether I actually sell any or not will be determined on what others think of my work, and of course God will make this new adventure work or maybe not work. So there is something else I did for myself.

I guess I am trying to say, that I am still working on my goal. My goal of not worrying what others think or do. That is their life, their choices. I am doing what I want to try, whether I succeed or not.

I used to believe that to think of myself, was too much pride or selfish, but I don’t believe that anymore. In order to be me, I have to please me, and that makes a healthier gal, right?

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Mutliple System Atophy Prayer


MULTIPLE SYSTEM ATROPHY PRAYER

 

How frustrating it is

When a loved one is pained

When we feel so helpless

When nothing is gained.

 

We wipe a brow

We clear a tear

we tell them we love them

And will stay very near.

 

We put hope in our doctors

But we may actually know more

For we are the ones

Who walk and pace the floor.

 

Prayer chain request are made

We kneel on our knees

” Dear God, please forgive me

I’ll do anything you please”.

 

“Give favor to this soul

Who completes my world

Please forgive me my sins

My mind is in swirls”.

 

“Please send a cure

Give the doctors your all

If you save my loved one

I promise to heed to your call”.

Amen.

Written by,

Terry Shepherd

01/28/2016

 

 

 

 

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