Hey everyone; it’s Monday! Did you go back to work? Or are you like me and stay at home?

There are pros and cons to going to work. Number one for me is the con; no paycheck. I get paid once a month and I have to make that last all month long; no matter what is going on that month. Prime example, December, Christmas, gifts, baking. Where does that money come from that we need when we live on Disability?

 

We just make it work. We find other means to make life as normal as possible. I have almost all of my Christmas gifts made or purchased. I am getting easy recipes gathered so I can take some goodies to my family’s home. Of course, this is a way for me to also taste sample and put on a few pounds.

 

Tell me what you are doing today? What do you do to make Christmas gifts stretch for you?

 

 

Parkinsonism/Ataxia/Dystonia

I had to write to you this morning because I read a post that reminded me so much of who I used to be. My heart ached as I understood her fear of what tomorrow holds. I do have an illness, this is true.

 

It is hard to walk, it has affected my legs and feet. I could not even devour the idea of walking in a relay unless it was hands on a walker and at a snail’s pace. I choke on some foods. I have trouble bathing. I have to take much longer to clean my house and baking or fixing a medium size meal would be very difficult.

 

When I received my news on how much my monthly disability check would be and I saw the report that the additional help of food stamps would only amount to fifteen dollars a month; I panicked. How can anyone live on fifteen dollars a week in food when I actually can see the price changes at the grocery stores rise sometimes in one week.

 

Without being able to earn a paycheck, how was I going to go shopping or keep the upkeep on car repairs or so many things I used to have to do. This illness has taken so much from my normal living and yet this illness has blessed me with new eyes.

 

I never noticed how beautiful the sun rising and lowering was. I never had the time to look. I never saw how close God was, standing right beside me, providing me with food that I need, introducing me to my camera, giving me the intelligence and knowledge to set up pages for patients and caregivers to come to for help.

 

I would barely notice that my needs were actually not being met by me; but by God. Now, I thank God for where I am at today. I thank him for my place to live, my friends, waking up each morning.

 

A new light has better shining ability to see things more clearly and this was instilled in my heart and soul. No illness is fun. I have never heard anyone say, I am so thankful I have cancer.

 

Everything that happens to us in our lives was planned out for us before we were born by our holy God. He will carry me through this. I will have bad days and good days. I will die one day and I shall see Jesus and I will be living in the most grand of all places; like no place on this earth.

 

Thank-you Jesus, for placing me right where you need me to be. Please continue to show me how to be of help to others. Please give me strength to realize you are holding me on the bad days. Thank-you for your love that never ends. Amen

Friends for Life

There are people worse off!

Yes, I realize this; but it doesn’t help.

Quit your whining!

I am trying; but it hurts.

Find something to do!

I am. I am trying to clean my house without falling down.

Why don’t you get off disability and get a job?

I miss work so much. My own paycheck. I wish I could.

You sure do sleep a lot!

Yes, I do. I get fatigued so easy.

You are the laziest person I ever saw!

If you only knew how hard I try to get through one day.

I don’t understand what’s happened to you!

Neither do I. It came on so slowly and now I’m fighting each step.

You never go out. Don’t you have any friends?

I have hundreds of friends through my support groups. Why don’t you take me out somewhere and help me through it?

I don’t understand you at all!

I don’t understand your lack of empathy and compassion. I thought we were always friends to the end.

 

Written by,

Terry Shepherd

 

Dedicated to those who’s illness has made a difference in their lives.

I Can’t Solve my own Puzzle

Wonder how many of you can relate to this post. I was a part of a family. I took care of my children. I had a side business in Antiques. Everyone grew up and moved on. Marriage dissolved.

Now I am older and alone. The lack of full-time work when I was younger,didn’t help me now that I collect that Disability check. I should be so grateful for my roof and bills paid, but what about the extra money I don’t receive? You know, where you want to buy food but can’t do much of that?

My health keeps me from working. Even if I could work, the government takes away the things I need most, such as insurance. I hate living off the government. I am not one of those who sits at home on purpose and collects, when I could be working.

Having Parkinson/ Ataxia/Dystonia, isn’t something that is easily turned into cash. I am safe, as far as the term goes, not living in the streets, but is it bad to want a little more? Wouldn’t it be so much nicer if I got to choose the foods I ate, instead of taking what is offered through other means? Don’t get me wrong, I appreciate the help, but I wish I didn’t have to take it.

I don’t consider myself a loser woman. I think myself as intelligent as others my age. I have looked into photography selling. I have joined a couple of groups. Plenty look, but no sales after too much time has passed.

I can write, or at least think I can, but it doesn’t pay. I have written and published a couple of books. I sell them, but I can’t buy groceries for a weeks time on the profits.

I paint, but I am definitely an artist only in my own mind.

What do people do at this point in their life? For me, no amount of searching has lead me to any real profit. I sit here daily and hope for change, but then I frown when I can’t find it.

Even after three years of getting no cost of living through Social Security, I finally received a small raise. The government then raised my rent and my auto insurance went up, you know, they yearly increases? I actually ended up going in the hole for 2018.

How do fixed income, senior citizens make a little extra, so things like food choices or a much needed pair of walking shoes can be had?

So depressing at times when, but haven’t been able to fix it yet. Perhaps one day.

We Shall Never Give Up!!

The weekend is over, but is it really? I know, you are going to bed early, getting up and going to your job. Kids are going to school. Routine, routine; but for some of us, the weekend is no different from a week day.

Some of us struggle daily with walking, sitting, standing, talking, choking, swallowing, exhaustion, infections, diseases, receiving enough help.

We don’t get a day off. Tell you what. I bet there are many like me who feel and hate having to get help from the government or programs offered for the sick and disabled.

I will tell you another thing. Most of us who remain at home, once had jobs. We raised children and families. We did that routine from Monday-Friday. For me, most of my working hours came on the weekends or evenings.

Last thing I want to say is; I will trade you any day. I will work your job, your routine, and you take my position and do it 24/7.

Support and help fight for Multiple System Atrophy, Parkinson’s, Ataxia and any other disability or illness that keeps us from doing what once was our routine.

Thank-you,
Terry Shepherd

 

Who Am I?

This is the name of my blog, Who am I? Well, after 63 years here on earth, I should know, shouldn’t I? I know less today than yesterday. I still have a perfect memory, or so I believe. Others have told me I am slipping and if so, it’s only a little bit.

When I was a kid, I loved riding my bike and playing with dolls. I really didn’t think about fitting in like the kids do today. There was routine when I was growing up. Mom and dad worked. I had a babysitter. Parents came home. Meal preparation, bath, a little TV and then bed. The only thing that changed through those years was a baby sister came along, and I traded the babysitter in for school.

The dream of latter years was to get married and raise a family; which I did. I was blessed with three wonderful children and now have awesome grandchildren. I don’t get to see them often but I have to remember, they are developing their own lives too.

Now that I am older and I have lost many family members, I am not so sure who I am today. I know that with my illness, I suffer from headaches and falls and tremors. I know that I don’t care for silence 24/7. I know that I enjoy being with my best friend in the world. I know that I love helping people. I have empathy and compassion that I carry within me.

I know that I hate not being able to earn a paycheck, but I realize that the rewards of helping others is bigger than money itself. Sometimes money just isn’t the main deal, is it. When you get in my age bracket, I worry more about having enough money to buy groceries, or pay for medicines, or keeping up with the high auto insurance companies prices.

A lot of people have entered my life throughout the years. Some I miss dearly and always tell myself, God placed them there for a purpose. I keep in touch with these friends, but miss our chats we used to have.

I have made many new online friends on my Facebook page. Many are patients or caregivers and families. These are beautiful people with hearts so strong and a will to wake-up tomorrow.

Today, I was happy to receive notice that I had been nominated an award at Wego Health.

Wego Health is a mission driven company connecting healthcare with the experience, skills and insights of patient leaders. You can see my site here; just copy and paste

https://awards.wegohealth.com/nominate

https://www.wegohealth.com/

https://www.wegohealth.com/about-us/

This nomination made me realize I am of value on this earth. I feel proud to have been nominated. Whether I win or not, isn’t the point. It is the feeling that people like what I do. I am helping make someone’s day brighter. I am letting others know I care.

I may not be a paid professional caregiver anymore, but I still am being a caregiver to those who need me the most.

So, who am I? Well, I don’t know all the answers, but I do know that I am still making a difference in others lives.

Below is the nomination I received.

 

 

 

 

 

Humpty Dumpty Can be Healed

She sat alone
Her dog, his bone.
She sat and cried
Asking why.
Feeling sorry for herself
Humpty Dumpty on shelf.
Why me, why me
Can’t you see?
Broken in two
Boo hoo, boo hoo.
A party she had
Pity so sad.
Break your crown
Now get down.
Off that shelf
You’re full of wealth.
Friends and family too
Always saying, I love you.
Just because you can’t stand
Or lend a hand, you’re still so grand.
They’d miss you, you realize
They’d look at the skies.
Tears in their eyes
For saying goodbye.
Now give all you can
We’ll take the love you send.
Your life’s not over
Just lean on our shoulder.

Written by,
Terry Shepherd

 

Be Grateful, Life Could be Worse

No matter how hard I am trying to stay positive, today is not one of the good days. It isn’t my  health; but yet my health plays a giant role. I am not unique; there are many in my situation. I can’t beat it; neither can anyone else, unless they know something I don’t.

By now, I bet your curiosity is up. Well, I will tell you. If you are disabled or living on the government’s assistance, you can smile and think,∴yes, I know what she is talking about now.  Yep, I got it.

Now don’t get me wrong. I am thankful for the roof over my  head. Heat when I need it and for being alive and safe, but I almost wish I lived with a roommate where help was more available. When you lean only on yourself, there aren’t many doors open. My problem is I pay the least possible in what I find I really would not like to live without, and this mainly includes; a way to reach the outside world or EMS, or talk to my kids, the cheapest of ways to be able to use the internet and the cheapest and lowest way of having sound within these walls.

Of course, there is auto insurance and other bills that deem important. Providing food is a task each month. I drive mainly for visits to the doctor, or visiting family. I guess it doesn’t really matter does it. The point is, everything seems off balance.

Not enough to live on and you know why? Because I made the choice to stay  home and raise my children instead of working, therefore not giving me enough credits to get a nice monthly check. Things will never change. When I reach 65 I won’t get anymore in my check.

This is when I hate Parkinson’s with a passion. It stops me dead in my tracks. I can’t get work. If I get work, I lose my medical insurance I carry through the government, or my rent raises so what’s the point of working? You can’t win over the system. I can’t work 40 hours, I can barely stand and walk for  more than a little at a time. Part/time work threatens a loss of help, which could cost me more dollars in the long run, then of course there is the issue of my balance.

So I would not have insurance offered by the company and would be forced to purchase my own. Have any idea what insurance purchased privately cost for a diabetic patient? I do, way too much.

I am so down in the dumps right now, because I know this is the way it will be until I die. If you have a job; be thankful. If you are dead tired, sleep. If you don’t have much money after paying bills’ thank God they are paid, next month is going to be different. If you don’t have to worry because the cupboards are getting bare, it will be alright, you have another paycheck coming in soon.

I guess what I am saying is; be grateful, life could be worse.

The Autistic Brother

“I want the coke! I don’t want the Pepsi!” Avery yelled with hand motions from the back seat. He had a thing for coke. It wasn’t the way it tasted. He liked the symbol of the coke bottle and he loved the color red.

Avery was born Autistic. He was obsessed with not changing anything in  his life.

https://www.autismspeaks.org/what-autism

 

He loved red. He had his bedroom decorated in red. He wore red Keds. He had red pajamas. He loved red Kool-aid. He was now nine years old and as long as those around him kept his routine the same; he was fine.

Teaching him new things was a challenge; but could be accomplished with much patience and professional training. He didn’t like school very well. He didn’t have very good social skills.

What he did like was spending time with his older sister; but that was a difficult task to achieve. The parents liked Avery being quiet. If others became involved in his life, wouldn’t that cause an eruption in their day?

There was a strong bond between the sister and brother. Some may even say they could somehow read each others minds. Whatever the travel of thought was, the point is that the sister understood.

Tonya played alone or sometimes was allowed to have her friends over. When times arose where it threw the brother and sister together, the two clung together. She read to him. She sneaked him pieces of her candy. She made faces at him and he would laugh.

When she got  older and began working, she would stop and buy him a coca-cola. He would squeal in delight as he took the bottle from her. When the bottle was emptied, he handed it back to Tonya. Tonya would rinse it out and set it on Avery’s shelf that hung on his bedroom wall.

The parents gradually turned the care of their son over to their daughter, as they became more involved in grown-up games. In fact, for some time now, Tonya was pretty sure Avery considered her his mom.

When the parents divorced, Tanya moved her brother into her apartment. She had hired care takers to come take care of him while she worked and when she arrived home, her evenings were spent with him.

Their lives seemed so perfect. A child born normal, a child born with handicaps. Each interested in the other. Each putting the other first. No one could ask for a better relationship than this one.

Tonya was coming home from work one day when she was hit hard from behind, by a drunk driver. Tonya didn’t make it. She died instantly. The care taker didn’t know what to do, so she called the police.

With a chain reaction, Avery was placed in a Disability group home. He was miserable. He acted out. He bit others. He screamed too much. He refused to eat. He didn’t know how to fix things. All he knew was he wanted his sister.

His refusal to eat sent him to the doctor’s, but even with the professional advice, he wouldn’t eat. In less than a month, he was standing by his sister, both holding hands, and they were  smiling and sharing a coca-cola with the red coke symbol on the bottle.

 

http://rmhealthy.com/10-signs-symptoms-autism/?utm_source=Google&utm_medium=CPC&utm_campaign=Google%20-%20CPC%20-%2010%20Signs%20of%20Autism&gclid=CO2BnaW2n9MCFUS5wAodSMgK7A

 

https://www.knowzo.com/health/autism/understanding-the-different-types-of-autism/3220

 

http://www.difflearn.com/product/ALL-PICS-Assessing-Language-and-Learning-with-Pictures/VB_MAPP_Assessment?gclid=CLz5m8i2n9MCFVi2wAodnxwOXw

 

http://www.autism-society.org/get-involved/national-autism-awareness-month/

 

Crawl Into Bed

I don’t know why my brain insist I wake early in the mornings. Being retired means sleeping in. Perhaps my brain thinks I am still a young kid. I know that my mind and my body do carry on different conversations.

I rise before the daylight shines. I force myself to go back to sleep, only to awake an hour later. I hear the birds singing, which I do love to listen to. I sit up in bed and look around. I ask myself, what am I going to do today? There is many hours that lay between crawling under my bed covers again.

Part of me feels a peace. No stress slamming me is a nice thing. I think it is more about being tossed out of my comfort zone. That seems to be an issue with me ever since Al passed away.

I got used to being in demand. Al would honk the bike horn sitting on top of his bed side table, and I would go into his room and do what I could to help him. I remember him requesting me to start the movie The Christmas Story, over and over again. Still today, I can’t watch that movie, but some day I will.

I remember him asking me to help his pain. There were baths to give, bed sheets to change, meals to fix, feeding him, cleaning him, talking to him, watching TV shows together. He took a lot of work, but you know what? I didn’t mind at all. I knew he needed me.

Perhaps I have this illness that I am not aware of, which has a name, but has not been assigned to me yet. I bet it is called, Stuck in the Middle. Somewhere between seeing a future and seeing the past.

I talked to my daughter briefly last night. I got the feeling that she and many others believe I should be on cloud nine, as I am now in my own place. I am able to make my own decisions, go when I want, return when I choose, but something is missing.

I still feel weird inside. The truth is, I think I am done. I took care of so many patients and I took care of my dad and brother. This was my purpose here on earth. Now, I can’t work because of this Parkinson’s thing. Feeling off balance on my feet is a big issue in my life.

It has forced me to become part of the system. It forces me to remain in one spot. It keeps me from becoming better in the finances department. I feel like I don’t do anything but get through each day. I wait to crawl in bed.

I miss the past, I don’t see a future. I want it over. If I can’t have a better income, if I have to wonder where my next week of groceries are coming from, I am not interested. I know that sounds hmm, cold? uninterested? I guess it does, but these are facts I live with daily.

I have lost my purpose. Yes, that’s what it is. I want what I can’t have. I want my kids and grandchildren close to me. I want to be needed again. I think about volunteering at a hospital, but right now, those patients seem like strangers to me.

I do enjoy my camera still. I do love my painting, but to be very honest, the motivation is gone. I hate having to force myself to want to do these. I wish I would change. I can come out of church and be so happy that I am alive. I see light where there was darkness.

I am still loving helping the MSA patients, but I wish I could help in person, rather than through a black screen and keyboard. I still love writing poetry. I can see that I still enjoy some things in life, and this is a good thing.

But what is wrong with the rest of me? Why in the world would someone, anyone want to be stuck in neutral? I don’t know, I don’t get it nor understand it. I will get through the day. I will putter around my apartment, and then I will crawl back into bed.