Tag Archives: M.S.A.

A New Responsibility Due to M.S.A.

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I just got off the phone with Hospice, making arrangements for his return home. The nurse said today has been awful. He is upset, crying. She and I talked about his medications. She believes it is time to make yet another increase on his calming meds.

We do this every few weeks it seems. Pretty soon Al will be on so many calming and pain medications he will just sleep all the time instead of the 16 to 18 hours per day. It is sad. She and I agreed that his good days are decreasing with more bad days in between.

She told me that starting the morning after he arrived his hands quit having their fine tuning. They have had to feed him each meal. This broke my heart. The nurse said out loud, ” how much longer is he going to have to suffer through this?” I told her I ask myself that all the time.

So now he comes home tomorrow evening and I have one more responsibility added, feeding him. I hate M.S.A. with a passion. I hate how it strips a person of his/her dignity. I hate how the memory is not affected in any way. This way more depression can set in mocking the patient, reminding them of what they used to be able to do.

I hate it so much I could scream out loud, Scream to the heavens, wake the whole country up with my lungs. I wish I could wake up and discover this was a terrible nightmare.

There isn’t enough awareness. There aren’t enough funds. There isn’t much other than research, which is exactly what is needed in order to save a life. But for my brother it will be too late.

Please, don’t let your pennies go into the piggy bank. Put them to good use finding a cure for M.S.A. Give a donation in Al’s name or just to M.S.A. Let’s find a cure before the next loved one lost is someone you know.

Please donate here: http://www.multiple-system-atrophy.org/donate

purple candlesAl and Rhino 3M.S.A. logomsa logoButterfly-butterflies-9186479-500-500

 

 

 

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A Nice Surprise

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After two days of mainly crying from Al I got the nicest surprise tonight. I walked in to change him and put him in bed and he looked up at me and smiled. He smiled. My heart jumped or skipped a beat. It is amazing that such a tiny thing can boost my spirits up so high. Now I will be greedy and hope I see one in the morning also.

M.S.A. you suck you know

You put my brother to an all time low

You take from him what he has had

You have made him feel so terribly bad

You have chewed him up and left a hole

You have even left him with no goals

I detest you, and I even hate your name

You never played fair, to you this was a game

I know there is no cure for right now

But I promise you will vanish, this I vow

For others you have sneaked in and made your home

But some day soon you will be all alone

For some are working long, long hours

And soon us humans will have the power

To cheer to jump to smile and scream

For finally we have realized our dream.

Written by,

Terry Shepherd

Oct. 18, 2103oct13 10

 

He Came Home

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Al and Rhino2Al at table 3Al July 4thAl on SundayAlvin homeThis is a photo I took of Al today when he arrived home from Hospice. I was thrilled to have him home. Although you may not be able to see it his nails were quite a bit darker than usual. This is a slap in the face to me forcing me to realize my baby brother may not have a ton of time with me. He has been very weepy. He saw Rhino the cat and petted him. Then he wept and said, ” I will miss him when I die.”

To You, My Brother

I will cherish you

Through tears

And mumbles

I will stand by

You dear brother

And all of your struggles

My heart bleeds heavily

And this you may know

That when it is time

I will let you go

For in heaven

There will never be

A tear flowing

From either you or me

Only joy and happiness

That you are now free

Is what I will keep

In my heart for me to see.

I love you baby brother

I wrote this

So I shall never forget

How much you mean to your dear sis.

Written by,

Terry Shepherd

09/21/2013

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Stabbing Pains When You Love

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Some days it is almost too much to go through the days. Praying and hoping Al is having a good day. Knowing and expecting a very tired man when he returns home. I have all the support from all of you. But yet in this past half hour my heart aches and I…

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