Tag Archives: Disease

I Am Doing This For Al, My Brother

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Tomorrow is officially National Multiple System Atrophy, (M.S.A.) It is a day to make others aware of this rare illness. To help the ill and families get the word out that WE want and WE NEED a cure.

We all know that most likely Al won’t be able to be helped by a cure, BUT we can be very involved. We can help others not to suffer like Al has.  Me as his sister and caregiver, the M.S.A. support groups, my friends here and on Face Book; everyone is doing their part to get the word out.

Since Al won’t be able to go to Day Program tomorrow on the day of awareness he and I decided to start today. He wasn’t feeling well this morning so his photo was not taken in his purple shirt. I did my hair and am wearing purple.

I am asking all of you to go to the M.S.A. site      https://www.facebook.com/Miracles.for.MSA     and light a candle. There is a section there to place Al’s name. If you want to donate to M.S.A. in honor of Al or someone you know with this terrible disease, please do, but no pressure from me.

So here it is, our day here, starting today helping make everyone aware of M.S.A.

purple balloonsme purplepurple balloons 2Purple Balloons_fullpurple candles

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The Loss of a Child

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I have found a group called M.S.A. on Facebook and it is a second home to me. There are so many supporters for this terrible disease. People know what is happening. I can ask questions about this illness and there are so many hugs.

My first home is here at WP so I feel especially blessed to have such a large, extended family coming from all sides.

My daughter and I were able to speak for a few minutes last night. I asked her questions that I did not understand, and it felt so good to have her take the time to answer me. I don’t always like the answers I am told. I don’t think any of us really want to face that giant wall of knowing we are facing death of a loved one.

Yesterday I learned that another precious adult child was taken to heaven. The mother posted her loss.  The grief that is in a parent to lose a child before they, themselves have taken leave, I would think would be devastating.

My Grandma has lost two of her daughters to God. Each time it happened my Grandma would say the same thing. ” It should have been me first, not them. I am the Mom.”

I can’t say that I know exactly what she is feeling as I am blessed to have my own children with me, but I can feel her pain.

My loss of words could not be spoken to Lucille but I am able to write in word what I feel. I wrote her this poem this morning and I thought, maybe my friends here at WP would like to see it also.

Here it is;                                                                            babybook4AnimatedCandleThoughtandPrayersM.S.A. logo

MY CHILD
It doesn’t seem right
It doesn’t seem fair
We give birth to a baby
He is with us every where.
We grow older
He grows up
He brings us smiles
As he sips from a cup.
Our hair begins to gray
He is thriving in school
We tear as he graduates
He has learned every tool.
We settle into retirement
He is told he is ill
We take our morning coffee
While he takes his pills.
Then one day we cry
As he left our arms for God
We stand at his grave
And look down at the sod.
It doesn’t seem fair
It doesn’t seem right
That we are still standing
But he lost his fight.
Written by
Terry Shepherd
In dedication to
Lucille C.

 

Not a Good Morning

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Yesterday when Al came home and I took him off the bus;  he was in a good mood. He chatted during supper. After he was finished he read his first card from Melanie R. from Maryland. It was so adorable. It had a photo of her and her cute dog. Also there was a photo of her cat. The card was adorable.

I didn’t realize that Al could not see very well any longer. I knew he was having issues, but I didn’t realize it had gone this far. I felt so sad inside, but read him the card and put a magnifying glass in front of him so he could see the photos. He smiled so I want to give a big cyber hug and thanks to Melanie for making his day.

The evening went well and then right before I placed him in bed, the illness showed its snake tongue.tongue_111

His nice personality went from nice to naughty. He was having problems with the buttons on the TV remote again, so I was helping him. He then went on to blame himself, curse the illness and cry.

I was forced to get him one of his pills so  he would have some sort of peaceful night. After taking the pill and tucking him in, saying I love you, I turned the lights off and came out to the living room where my good friend the computer sits.

I could hear Al cussing me out. I am not sure why but this went on from cursing me to his disease and to the TV remote. Finally the pill took effect and I then went to bed.

This morning was no better. He said that he had a bad dream. He went on to say, ” mom and dad had a program and they wanted me to do something in it. I tried but I couldn’t do it.”

I asked him, “did either of them get upset with you?”

“No, they didn’t get mad, I was sad because I couldn’t do what they asked.”

I explained about the illness and what it is doing to his body. I told him that his lack of walking, tremors, bad eyes, that it is all due to the illness and nothing that he did. He and I talked about this during his wash-up time.

At the breakfast table he could not swallow his morning medications. One by one pill dipped in applesauce I got them in his mouth, but then he could not swallow his orange juice.

I was beginning to panic a little. I had him take a bite of his french toast and then chew that the best he could and then take another swallow of juice. He finally got that all down. When it came time to take a bite of his breakfast sausage, he chewed it to death. He didn’t swallow it. Once again we went through the slow motion and I stayed by his side during the meal in case I had to save him from choking.

He cried and cried. I tried to talk to him about the good things he can still do, but his mind just wasn’t willing to accept anything I said. I brushed his teeth for him and cleaned him up and then when it was time to get on the bus, he was still crying.

The bus driver looked at Al and without any cue from me patted Al on the shoulder and said, “let’s go pick up those ornery girls next. You and I can pick on them.”

I thanked him for his words, both of us hoping that the girls would take his mind off his illness.glee

FYI

If you want to send Al a card to uplift his day, please email me at

tellmenolies2004@yahoo.com

for our address.

Parkinson’s Gave Me Gifts

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English: The Parkinson's Disease Society in Va...

English: The Parkinson’s Disease Society in Vauxhall Bridge Road (Photo credit: Wikipedia)

I have had a few people from blogging world and in real life that have told me there is a reason Al will not be going to heaven just yet. Some would say that maybe there were lessons in this sad illness.

In truth, I used to get angry, not at you, but at myself. I didn’t like it that Al was suffering and I was on the outside looking in. I was able to drive and walk, and feed myself. My numb feet from my Diabetes look so small when I see what Al is going through.

But as I look back in time I had to stop and wander a few things. Would I be as close to God if Al didn’t get this nasty Parkinson’s Disease?

I don’t know since I can’t go back and replay the scene. I do admit that I was a floater. I would float in and out of church when I felt like getting up and going. I would plaster my smile on my face and speak to strangers; when what I really wanted was to be home in my comfy clothes. Alone and not smiling.

There is a difference between being alone lonely. When I was in high school, I knew 98% of my graduating class. When I thought about friendships, I was friends with maybe 30%, but digging deeper I was friends with only 1 or 2 people.

I can’t imagine why, but I really did like it that way. Crowds bug me. You will never see me at the big pool parties, or the center of attention in any ring. Today, I am pretty much the same way. I have 1 very close friend, about 10 friends that I speak to on a regular basis, and I know hundreds of you here at WP.

Church, is another topic. Let’s see if I can explain it so you can understand where I am coming from.

I don’t care for church. I used to, but through my sorrow of loss of beloved family and seeing what Al is going through, I cry when I am in church. Then I wish I wasn’t there. Next comes the guilt that is heavily laid across my shoulders.

Mom always told me that a good woman could be found with a strong church background. So, I was disobeying her, although she is in eternal heaven, I know that it is wrong not to go to church.

Now flip that coin over. I am closer to God today than I ever was. I used to go to church regularly but I never gave it another thought once I walked out the church doors until the next Sunday.

Now, I pray and talk to God on a daily, and sometimes hourly basis. I feel like he and I have a connection. He is my rock and I am his sheep. When I get scared I run to him. When I feel weak or tired, I tell him and I expect him to help me. I thank him for the tiniest of things. If I stayed within my budget at the grocery store, I thank him for that. Like I said, I know that he is helping me every minute of the day.

So I know that I am stronger with him today than ever. This is probably the biggest thing Al’s illness has brought into my life. I know there is so much controversy  about heaven and hell. There is one, there isn’t. It is another higher scale of this earth we live on. I have heard so much, but the truth be known, I grew up in church, so I believe in heaven and hell.

Through looking at cute boys, to falling asleep in church, I learned things that stuck with me forever. I am not going to take that one chance and intentionally blow my chances of going to heaven.

What if there really is no heaven? So what? I can look back from where ever I am after my last breath and say to myself, I did Al a lot of good. I was kind to people. I turned the other cheek.

One other point I want to make and then I will shut up, is this. When Al became ill and I learned through the months that there wasn’t too much of a support system out here for me, I got my big defense wall built up, and said I can do it all alone. Who needs them?

Another false belief. I learned it feels good to  have a support system. I don’t have to cry alone. I can pick up the phone and call my friends. I can email you. I have gained so many friendships through WP and Al’s illness, I now realize I will never be alone even when I am sitting here where it is quiet. I have God and I have all of you. For this I am thankful for Parkinson’s Disease. But don’t push it, other than this, I hate his disease and what he is having to live through hourly.

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When Are We Not Responsible?

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Diseased Door

Diseased Door

I was told of a story recently and even after a few days of digesting it I am still bothered. Have you or I ever had life go entirely as we want and it to? Have either of us ever had things pop up that are hard to handle or even more can’t fix? I know I have.

As kids we are born innocent in this world. We are nurtured  as well as our parents know how. We become adults and have children of our own. The cycle of life repeats itself until you are filled with great-grandparents down to great-grandchildren.

What if a bump comes in the road and we don’t see it? We fall in and can’t get back out without help. Do we as family and friends turn our backs on that person? Or do we try to help them climb back out?

I am not talking about Al today. I am talking about an adult who had a great life. Makes mistakes as we all do but then is hit with an unexpected medical problem. Not all medical problems are cut and dry like the flu or maybe tonsillitis.

Some illnesses that stop by to take over are heart attacks and strokes or maybe even cancer. These types of illnesses can do more damage than the naked eye can see. It can change moods, brain waves, vision, hearing, muscle tone, weakness, and pain within the body.

So many changes that the ill person can  no longer control. What do we do now? How long do we stay around and help? Don’t we have a life of our own to live? Didn’t we go visit and pay our respects long enough?

These are questions that have been asked by some as people realize that family members are going to be stuck with these side-effects for months or maybe years to come.

When is my duty over? When can I go on with my own life? Just because an illness or stroke has taken over should we now leave them behind to suffer through until death comes knocking at their door?

I hope that my own answer is always no, never give up. Keep showing your love and keep being an inspiration to the one suffering. I heard of a human being that has suffered in this way. The illness is never going to be better. The strength is never going to be gained back.

Sometimes when we are sitting on the other side of the fence able to walk and run and play we can’t put ourselves in the shoes of the wheelchair patient. It is hard to imagine us ever being stuck in place.

But it happens, and this is sad. There are no guarantees in life for sure. This man’s family has been there but maybe could have squeezed in more time. Patience has run out, and the younger generations are tired and restless and ready to move on.

I completely understand this but what about the fact that they are relation? Does this not matter that only years earlier this patient was there for you in his good times? Is it alright to wipe him from your mind so that you can have a better time in life?

Are we entitled to move on and say the hell with him or her. I did my best. I spent time. I tried. Now this person is in danger of being left on his own, while others chase opportunities.

Oh I am not sure why I even bothered writing this. I can’t seem to get out the exact thoughts I want to be seen. All I know is that it is hurting me inside to realize that big changes are coming possibly, and the one that is going to be hurt is the patient. While the road seems greener on the other side of the fence, I still believe that blood is thicker than water. I would not rest well at nights until I knew that this human being was resting too, somewhere safe, somewhere out of danger.

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Daily Prompt; This is Your Life/ The Daily Post

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Lord lovelace bridge

http://dailypost.wordpress.com

If you could read a book containing all that has happened and will ever happen in your life, would you? If you choose to read it, you must read it cover to cover

I would choose not to read a book about my entire life. Why do this? Ruin the ending? Do I want to know when I am going to leave this good earth? Do I want to still make choices and errors in my life?

The errors no, but how do we learn if do not make mistakes. I don’t want to know if I am going to get cancer, or get hit on the highways. This gives me the shivers just thinking about it.

I am the one who will not get those special expensive tests to see what I may die of. First of all they are not accurate. They do not report that you will die from this or that. I think I would drive myself crazy knowing my ending ahead of time.

Our purpose here in earth in my view, is to live a life pleasing to God. To let others know about God. If I knew I was dying, would I become obsessed with myself instead of bringing others to the Lord?

Would I say forget everything. Let me live and let me die. Give me all of those cookies I fight so hard to not eat. May I have that piece of cake with all those sugary flowers on top?

I believe for me, I would lose respect for myself and my fellow-man. I may give up my hope for life, and I may quit trying so hard to continue to live a good life. By good life I don’t mean riches. I mean by your inner heart and soul.

How would you change if you knew you were dying within one year. Would you go to those enemies and spill your guts and say all of your I’m sorry’s?  Have you made your peace with your maker? If you died tomorrow, let’s say, are you satisfied with where you think you are going?

No, my answer is definitely a no. I don’t want to know anything ahead of time. And by the way, if you read my book start to finish, don’t tell me about it.

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