Broken/ The Daily Post/ One Word Prompt

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

The word for today is Broken

That’s the way my foot feels; broken.

I have Dystonia. You wonder what that is? It is involuntary movement of muscles. Mine is at the moment in my foot. I have seen it do it before; but then it left. This time it has remained for the sixth day.

a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy.

Most cases of dystonia do not have a specific cause. Dystonia seems to be related to a problem in the basal ganglia. That’s the area of the brain that is responsible for initiating muscle contractions. The problem involves the way the nerve cells communicate.Sep 11, 2016

My shoes that I feel most comfortable in are not working right now. When I get out of bed, the pain is quite intense. When I lay down at night, my toes curl under, just like in the photo above.

I have called my Neurologist and am waiting on a prescription for muscle relaxer. I hope it works.

I have a wonderful doctor that immediately diagnosed my brother with his rare disease; Multiple System Atrophy. Since I was his sister, I was able to get an appointment with him for my diagnosis of Parkinsonism/Dystonia/Ataxia.

He is a neurologist of science. He is very smart. I recommend him for any neurological disease that you are having a difficult time getting diagnosed.

https://doctor.webmd.com/doctor/thomas-curfman-md-66437503-4aac-49bb-8bef-611a300832b7-overview

 

 

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 .”

 

My New Facebook Page

I have talked a little bit about my new Facebook page. I am almost at the 100 Likes on it which makes me happy. It has spread to about 900 people now and I have had it for a week.

I thought it only polite to let you see the page if you care to. If you know someone who has Multiple System Atrophy and would like to share it, I would appreciate it, in fact, I hope all of you share it with someone.

https://www.facebook.com/MSAfeelingstressed

 

 

I Made A Short Film For NeuroFilmFestival.com

I made a short film for NeuroFilmFestival.com  My film was entered so that there may be more awareness of the illness my brother suffered from.

I thought maybe you would like to see the film.

My Dear Brother, Al, A Memory Lives On

There is a page about MSA page, called Tim’s MSA shoe, on Facebook. It has a lot of information  about different things. The story of why it is called the name above. Contact numbers, donation areas, a sharing on places like tweet. It is a very interesting page to read, especially if you want to further your knowledge about the terrible disease my brother, Al had.

There is a section about MSA angels, and tonight I was told that my brother’s name had been added. I am so proud. Anything I can do to help make others aware or help to keep my brother alive in spirit, I am all for.

I just had to share the page link with you. My brother is the first photo listed under the tab MSA angels. You can read a small description of him. Of course many, many of you followed me through my journey of caring for my brother.

Thank-you for taking the time to look at it.

I love you dear brother, and miss you still so much.

http://timsmsashoe.org/our-msa-angels/

Flash Talk/ The Daily Post

http://dailypost.wordpress.com/dp_prompt/flash-talk/#like-90027

Ben Hubberman

 

Daily Prompt

Flash Talk

You’re about to enter a room full of strangers, where you will have exactly four minutes to tell a story that would convey who you really are. What’s your story?

 

I put on my most beautiful dress I owned. Applying my make-up ever so carefully, checking for hairs out-of-place, I twirl around gently hearing the material dance in the wind.

It is my night, the night I have waited and dreamed of for three years. I have been invited by a white and gold trimmed invitation to speak about MSA, Multiple System Atrophy.

Ever since my brother passed away I have tried in so many ways to spread the word of this disease. I promised Al that I would carry on in his name sake, but alas I am a nobody. A pebble on the beach. A mouth with a soft-spoken voice. No one hears me out of my circle of associates and friends.

It so happened that I went to visit a friend of mine in a plush city. We were having drinks at an infamous jazz club in downtown Chicago. Of course among our delightful conversations, I managed to bring up the topic of MSA.

Little did I know that one table over was a lady eavesdropping who just happened to be a researcher for rare and unusual illnesses. As our duo party was coming to an end we stood up to leave and the lady at the table slipped me a small  napkin with her name and phone number on it.

I looked at it and then at her. I smiled as the thought of her coming on to me was too funny in my eyes; but I thanked her and she introduced herself formally and handed me her business card. As I turned around I promised I would call when I had empty time.

A few days later, my visit over, I was relaxing and watching television. A lady on the news was speaking. She looked so familiar. Wait! That’s her! The lady from the club. I ran and found the card she had given me at the bottom of my purse. I went back and listened to the last few sentences she said. She was looking for speakers for a convention on rare illnesses.

The next morning I called her and here I am in a hotel room she reserved for me and now I was on my way to the hall where I would be speaking.

Ladies and gentlemen, my name is Terry Shepherd. I am the sister of a gentleman who had a rare illness for seven years. It is called Multiple System Atrophy. I promised my brother that I would do what ever I could to help spread the word of this rare illness. I am determined to open your eyes and explain what this illness is all about and how you, each of you can help me to make a difference. With your jotting down important information I am about to give you, you will be able to take it back to your own people and teach what I have taught you. There is a web-site where you will be able to not only donate funds but it will also allow you to set up your own conventions, drawing in more and more people. When I am finished I will spend as much time answering questions that you have for as long as need be. Now let’s begin. Turn off your cell phones, turn your eyes on me and place pens in hands.

 

http://www.multiplesystematrophy.org/

 

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

 

 

Breaking the Ice/ The Daily Post

http://dailypost.wordpress.com/dp_prompt/breaking-the-ice/#like-89093

The internet has recently been swept up by the ALS Ice Bucket Challenge. Is there a cause — social, political, cultural, or other — you passionately believe in? Tell us how you got involved — or why you don’t get involved.

I have two causes which I believe in and try to spread to others through my actions and words.

My first cause of course is God. I have drifted in and out of God’ s view different times in my life. I was baptized when I was ten years old at church camp. From there I just faded in like clouds according to how my life was going. There were plenty of times that I thought I didn’t need God. Other times I wanted proof he existed. After all, we are a world who needs proof.

In a way that is hysterical as an excuse. There are people out there who don’t have proof until they find themselves laying in a dark and gloomy box after trying drugs. There are females that think they know  they can have sex without becoming pregnant, and then losing the baby to another home or maybe worse, then  discover their full-proof theory didn’t work.

I finally got it through my thick-skin head that I needed God. I could and can do nothing without his guidance and help. I learned that I am to witness to others, so this is my most important cause in life.

My second cause is to spread the word about a very rare illness called MSA, which stands for Multiple System Atrophy. This is a terminal illness with no known cure as of yet. It is so rare that getting donations is very difficult to do.

We need donations so a cure can be found. We need caregivers, families, and doctors to spread the word. We need more information on our Google and other search engines for people to read about.

MSA is an illness that for most, cut the ties that allow your body to move. My brother had this for seven, long years. It left him crippled, bed bound, not able to speak, swallow, eat, focus, contain bodily fluids. He lost his communication skills and he lost his ability to remain a man.

He laid in bed, bound inside the rails for six months, with me completing all tasks for him. He lost his pride also. The worst part of MSA in my opinion was not what he lost; but what he kept.

He still had his memories. MSA does not usually affect the memories. This caused great embarrassment to Al, my brother. He knew that at one time he had worked, driven, made decisions, went to the bathroom on his own, bathed himself, fed himself, cashed his paychecks, went to church, decided if he wanted to sleep in or not.

He could choose his own clothes to wear, decided what day he would go to the grocery store, pick out his own foods, tie his shoes. Folks, the list could go on and on. This illness strips everything and it did for Al. When he died  he had went from 295 pounds to 130 pounds. When I looked into his casket, I couldn’t recognize Al, I could only reflect on my memories of him from earlier times.

If you want to help a cause and you can’t decide which one to help, please consider helping MSA. I am not saying Feed the Children is not a good program, or that Cancer research is not worthy of your monies; but MSA– has little funding coming in.

No funding means no research. No research means no cure. No cure means every week when I look at my Facebook MSA pages, another soul has earned his wings, as Bonnie Llewellyn, always says.

Go to the link below I will provide you with. Make a donation. Make it a dollar, five dollars, ten or twenty. Hell, make it one hundred. The point is; just make it. The life you save may be your own or someone you know as a family or friend. After all, my friends, MSA is most commonly misdiagnosed for the first few years as Parkinson’s Disease, and I am pretty sure we are all familiar with those words.

 

http://www.curesma.org/

I Talked About You Today

 

 

Today I had to run some errands. Among those errands were dropping off cards and flowers to some that have remained along my side since my brother died. I walked in smiling and cheerful, and walked out in tears.

No, they were not sad tears, but tears of good memories of Al. We talked about the life he had growing up. We spoke about the smile that was always on his face when a compliment was paid to him or he knew he was doing something to help others.

We talked about the suffering he went through from the time of his bed rest in October until March when he went to  heaven. Al was a proud man. When he could still speak he would always remind me that he thought he was a burden to me.

I constantly had to reassure him that I was taking care of him because I loved him. I know it is hard to believe but do you know the company he worked for, for nine years still talks about Al at least once every day? Yes, this came straight from the employees mouths. They miss Al almost as much as I do.

I shared a moment when Al could not speak anymore but God performed a miracle. He allowed Al to speak one final time and the words were as clear as crystal. I probably have shared this with you, my friends before, and if I did, I am sorry you have to read them again.

Al’s last words to me were my gift for taking care of him. He said, ” Sis, you did your best, I know you love me and I think you are the best sis ever.” Even writing this makes me all teary-eyed all over again. I thanked God that minute he spoke and I still thank him today for that special gift.

It is still very difficult for me to move forward, but I am having better days. A friend told me today that I visited,” You took care of Al for so long. You never gave up. In ways you were closer to him than any other siblings I know. There is bound to be a large void  and a feeling of being lost.”

Those few sentences seemed to validate how I feel. I  felt myself relax a little. It was like being told that the illness I carry inside of me called mourning, is alright to feel. I am going to be healed in time.

I think dear God above must know this will be true also. I believe this is why he is allowing me to move to a different scenery. Faces that I saw today didn’t have to speak. I knew from their eyes they miss my brother also.

Although there were tears today, I feel a few pounds lighter knowing that this is normal. My feelings I carry will fade from the pain and the memories I will gain. Miss you brother, and in case you are wondering bud, yes, we were all talking about you today. You know? I think I just saw you smile from heaven. Take care of him Lord until I get there.

Hair Trimmers ETC.

 

There isn’t a day that goes by that I don’t think of my brother, Al. I look at this photo and I can see he is almost ready to tear up from the pain he endured. Oh how my heart bleeds when I see things that remind me of him.

It may not solve all of my problems but getting out of this home that has mainly memories of death can’t do anything but benefit me. Tonight, I went back to packing. I was cleaning out the items under my bathroom sink and found a large zip-lock bag. I don’t know why I had placed it in my bathroom. Who knows what kind of thoughts I was having from the day he left this earth.

In the bag was all the hygiene I had used on him. Hair trimmers and mustache trimmers, combs and nail clippers. I almost dropped it as memories came flooding back. The tears started rolling and I realized that although I am making progress, it is still very fresh and may take months and months for me to get through this.

How can something so small bring so many tears? Because each time I did anything other than bathing I put a little more love into it. I knew I was hurting his neck when I trimmed his hair. I knew I was hurting his head as I tried to shave him. The pain I brought when I tried to pry his fingers open to trim his nails.

Love, the love that I still feel for my brother is very near and just re-living those last six months of him being bed bound and the extra care and sensitivity along with compassion are so painful to me today as I realize I can never trim his hair or nails again.

Oh my brother, my bud, as I called you; what I wouldn’t do to see your face one more time. It feels like someone just stabbed my heart with a hot branding iron. I miss you so much and I will never, ever forget you.