Could You Help Me?

https://www.facebook.com/donate/566976957002931/?fundraiser_source=external_url

 

My birthday is coming up on this Saturday, April 21. I don’t know how many of you followed me while I cared for my brother who died from a rare neurological disease, called Multiple System Atrophy.

I had been a caregiver for many years and never, ever saw a disease so ugly and demanding as this and I am not just saying this because my brother suffered from it. It took everything from him and almost claimed his vision. It left him a vegetable in a shell and was a very painful death.

For my birthday, I am asking you to donate a $1-any amount to help find a cure. I swear to you, you don’t want any of your family members to get this.

 

Multiple system atrophy (MSA), also known as Shy–Drager syndrome, is a rare neurodegenerative disorder characterized by tremors, slow movement, muscle rigidity, and postural instability (collectively known as parkinsonism) due to dysfunction of the autonomic nervous system, and ataxia.

Multiple System Atrophy Awareness Month. PLEASE HELP US

We, the patients, caregivers, families, doctors, scientist, volunteers, medical clinics, doctors offices, Neurologist, all need your help.

I KNOW from experience this illness sucks big-time! I know the exhaustion families and caregivers go through while caring and watching their loved ones. I KNOW the fear that creeps into our hearts as we ask so many questions that answers are not there for. The rarity is here. We need help. We need answers. We need funding and we need it NOW.

PLEASE HELP, PLEASE DONATE A FEW DOLLARS, EVEN A STARBUCKS COFFEE’S WORTH.

PLEASE DONATE TODAY IN MY BROTHER’S HONOR AT THE LINK BELOW.

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

 

 

 

 

 

My Story on Multiple System Atrophy/ Parkinson’s

Hello, my name is Terry Shepherd. I am the sister, caregiver and the person who is going to tell you the story of a very, rare disease called M.S.A/P. (Multiple System Atrophy/Parkinson). I will say this illness will make you feel as if you are riding the biggest roller coaster of all times.

 

Imagine your life has been exactly the way you want it. Graduate of college, nice family, a couple of kids, nice house, two cars. Nothing could be better than reaching middle age and having no regrets.

One day you wake up and you don’t feel the energy that you did the day before. You go through your routine you have built throughout the years; but when you get home, you feel you have to take a nap before you can go any further.

You discover that one of your hands has a slight tremor. You shake it off, by telling yourself you must be coming down with the flu or something. You continue through your days and weeks and notice these symptoms appear off and on, and then one day you trip over your own two feet.

Perhaps you will notice that your leg has begun to tremor, or maybe both sides of your hands and legs have tremors and you have more days of this happening. You sit up and take notice. You tell your spouse and a call to the doctor is made.

You go to your appointment and  he leads you through the many questions about your history. He guides you through some special walking tests and he tells you, you have Parkinson’s Disease.

You go home with plenty of information and you think you have it all figured out. You probably believe that this is something you can deal with; since it is a very slow moving illness.

Each month something changes though. More tremors, fatigue building,  and a  weakness you never experienced. You fall to the floor. You are alright, but you dig out your information packets and you are astonished that these symptoms are moving at a faster pace than stated.

One morning you are eating your breakfast, and you begin to choke. The muscle in your throat doesn’t seem to be working like it should. Another call is made to the doctor and you are scheduled with a neurologist.

You arrive at your appointment, the discussions begin, and if you are real lucky, your doctor may tell you that you do have Parkinson’s; but you also have Multiple System Atrophy. So many physicians are not familiar with this illness, and it is very common to visit doctor after doctor, to walk away with each of you scratching your head on what in the world is happening.

What is multiple system atrophy?

Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by a combination of symptoms that affect both the autonomic nervous system (the part of the nervous system that controls involuntary action such as blood pressure or digestion) and movement. The symptoms reflect the progressive loss of function and death of different types of nerve cells in the brain and spinal cord.

http://www.ninds.nih.gov/disorders/msa/detail_msa.htm

The average life span for this rare disease is 7-9 years. It is a rapid decline of the body’s ability to do things for itself. A few things to mention here that you may or may not be afflicted by are;

A. Choking, swallowing

B. Slowness in movement, stiffness

C. Impaired speech

D. Fainting, lightheaded

E.Bladder control

If you click on the link I provided above, you can read  much more detail about this beast of a disease.

My brother had this illness. I was not only his sister; I was his primary caregiver also. MSA consumes the patient, so for the caregiver; it is a very tasking job and in the end will take up all of your time. You will spend hours like I did, researching MSA. You will join groups to find out more information.

All you want to do is understand. You want to do anything but stand by feeling useless, while your loved one declines monthly. In the end, my brother could not speak, eat, move, blink. In other words, his entire body shut down. It was the most devastating disease I had ever been a witness to in my medical career in 25 years.

The best advice I can give anyone who is living this through a loved one is;

A. Find something positive in every day. Make this a habit; you will cling to it more as time progresses.

B. Make a journal. Don’t do this just for yourself, perhaps at some point you can help others understand. I did this. I have a special site where patients and caregivers can come chat with me.

C. Always wear a smile when you walk into the room where the patient is. One thing Multiple System Atrophy doesn’t usually do; is touch the memory part of the brain. Don’t speak about death, or how the patient looks while in his/her room. They hear and remember what you are saying.

D. As communication decreases, do what I did. Learn different ways to talk to the patient. I used squeeze the fingers, blink an eye, chalkboard and chalk, flash cards. A very important thing I did as we were going into the last six months of my brother, Al’s life was, I memorized his favorite schedule. It becomes pretty important when the patient is bed bound, that you know which part of the Bible he/she likes to hear. Which programs are their favorites and what times they are being aired.

E. The last thing I want to say, but definitely, I have more to add, if I had the space to write is; show the love, show the family photos, listen, I mean really listen to the words being said to  you. Save them in your journal or memory box.

This is a cruel illness. It doesn’t pick out the rich or poor, nor the color of your skin. It seems to hit those in their fifties; but has been diagnosed in those much younger.

There is still much to learn about this life shortening illness. Doctors and scientists are working on a cure every day. With your help of donations and sharing the information you have learned, we all can make a difference, and hopefully soon, we will hear the words; WE FOUND A CURE.

If you would like to make a donation, please visit the link below and follow the directions.

Differential Diagnosis

 

Here is a photo of my brother. He was born 05/03/1955

He had Multiple System Atrophy/Parkinson’s  from the years 01/05/2008-03/24/2014

He passed away, 03/24/2014

I sure do miss you.

 

Medical or All-Purpose Marijuana

Medical or All-Purpose Marijuana.

I Have Proof I Am Getting Older

I was looking at a small paper that comes once a week; a freebie. There are a few topics I enjoy reading other people’s opinions. Before I reached that point I saw this photo.

I looked at it not once, but a few times. Those eyes sure did look familiar. I had to go to the main article and read it. Oh my gosh, it was my 6th grade teacher at Lincoln School, here in Warsaw, Indiana.

I didn’t calculate how old I was back then. I do remember I really enjoyed her personality. I liked to be in her school and I remember she called my name several times. Some of those times were due to answering a question or asking me to be quiet.

She has volunteered for Hospice for several years now. I never had a chance to meet her while Al was on Hospice. I also learned she attended the same church as my brother did; but I never recognized her.

Wow, she was not only an excellent teacher, she was and still is an awesome lady. So proud of you Mrs. Carey for all you did for us students and what you do for patients in end-of-life situations today.

 

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.

I Did It!

Well, I did it. I got through the million questions. She asked, I cried and answered. So much brought back again. I listened to you, my friends. You cheered me on. You told me I could do it. Al even told me he would be here with me emotionally. I clung to those words as she asked things like, ” How did he die? Did he have MSA? How many years did you care for him? Why did you place him in a nursing home?” It went on and on.

Hospice promised they would stay in touch with me after Al’s funeral. The last time I saw or heard from them, was his funeral. I am so thankful that my daughter took me home with her and her family.

I am so thankful for my daughter-in-laws, Heather and Kristin for taking out of their family time and spending time with me. I am so thankful for Peggy and Sue, who have made me get out of this house.

Oh Lord, I am so thankful for all of my blogging friends, my Facebook friends. You don’t know how much I have counted on all of you. I thank Shona for picking me up off the floor emotionally and telling me I can do this.

When I am here in the house alone my heart spills out on to the floors. When the silence comes at night and the lights go out, the sense of Al not being here is extreme.

With all of your help I am able to get through each day. I am having more minutes that are calm, which must mean I am slowly healing.

Please, if you have a family member or friend, or someone you think about and tell yourself you need to give them a call, don’t hesitate. You never know when you may not have that chance.

For me, I knew Al wasn’t going to be here forever. I got that chance to say everything to him I ever wanted to. We were able to do so many things together when the illness was in its lighter stages.

So many of us don’t get these warnings. Instead we get a phone call in the middle of the night. Or we hear about it elsewhere. Take a moment my friends, and thank God and your lucky stars that you have people in your life. I know I do it each and every day.

A Pimple Ready to Pop

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

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

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

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

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

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

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

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

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

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

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

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

Is Al Talking to Me or Someone I Can’t See

Well my girlfriend is gone. We ran to Wal-Mart to try to find a stethoscope because I thought mine was broken. They didn’t have one and when we returned home my friend had a call waiting that told her that her granddaughter was getting ready to have her baby, so she headed home so she could be a part of this magnificent miracle.

The Hospice nurse came and she discovered there was an issue with my stethoscope and she fixed it. I was relieved. Al is still moaning and groaning. He sometimes doesn’t act like  he is aware that we are there.

He has asked me to take him to get tires for his car. He has pleaded to just get out of his bed and go somewhere. He has slept about 10% the entire weekend. Today after the lunch hour he has been asleep for 15 minutes.

It sounds like his is chanting. I am not sure whether he is talking to me or maybe someone he sees that we don’t. The nurse said with his not eating and drinking he will not be here too much longer.

I wish I could calm his moans. I can’t help it friends. It does tend to get to you after a while of hearing it. He did ask for ice-cream this morning but ate three bites and that was it. His urine has turned from an amber color to some sort of weird yellow I had never seen.

I would give my right arm to take a way all he is going through, but I can’t. I am going to go lay down since I have a caregiver until four today. I just wanted to touch base. I will try to write again later today.

I Feel Too Lazy To Cook

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

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

The Hospice nurses decided to ask the doctor for a different type of medication that he already uses. It comes in ER form, which is extended release. It releases a small amount of medication constantly  for 12 hours.

I ended up giving him one pill three different times. As the day wore by Al stayed more awake. He constantly asked me what time it was. Or he was asking if it was PM or AM. I believe that since the medication releases small amounts at a time it just wasn’t giving the power that the regular medicine did. I called Hospice this morning and asked if I could go back to the prior medicine and she said yes.  He was not a good sleeper through the night either, so you can imagine that I look like the Wicked Witch of the West today.

At seven-thirty this morning I finally fell asleep but then was woken up by my friend telling me, ” Al is calling out, sis.” I jumped up and went in to see what he wanted.

He wanted to get up. I explained to him he couldn’t because he can’t sit up. He continued to complain and moan until 11am when the volunteer came to help me bathe him.

When she arrived I cut Al’s hair and trimmed his mustache. We bathed him and when all was done, he was fast asleep.   Within a half an hour he was awake and still is. He is not moaning at least. He has not eaten for two days now except two bites of something he asked for yesterday. I think it was his ice-cream.

He didn’t have that big brown surprise for me today and I thanked God immediately for this wonderful gift of not seeing it. Now I am just waiting for my friend to bring back lunch. She even added that we could order pizza for supper.

She is just an angel with big wings to me. I will miss her kindness when she leaves tomorrow, but like me, she is expecting another grandchild and needs to be there for the birth.

I dread tomorrow in a way and yet am thankful for it. The phone doesn’t ring here on the weekends. No Hospice comes unless I call. No caregiver, no nothing.

But on Mondays it all starts again, noise and commotion and busy, busy, busy. I don’t complain though. They are all here to help Al, and give me a break. I think I am going to sneak out of here a bit tomorrow, because I need a break from inside this house.