M.S.A. ( Multiple System Atrophy)

I can see your dirty work

Taking more of his soul

Holding his feet with weights

Letting him move no more

You can’t begin to know

What you are doing

To his emotions

As you slither your

Way as a snake crawls

In tall grasses

Not only have you

Taken his strength

You have stripped

His hope

You have caused

Nothing but

Sadness and grief

You will not stop

You will continue on

Until you have sapped

The last breath he has

And he lays down

Never to return.

Written by,

Terry Shepherd

08/15/2013                                                                          Brother Sister Love

The Hospice nurse told me this morning that pain medications have to be increased. The M.S.A. is being aggressive now, taking what ever Al has left to fight with. Al has not been able to move his feet to transfer now for almost a week. Last night when I put him to bed he cried and told me,” I can’t fight anymore sis. I am tired and sick of being sick. Just throw me a way.”

What is Multiple System Atrophy?

Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of muscle coordination. MSA affects both men and women primarily in their 50s.  Although what causes MSA is unknown, the disorder’s symptoms reflect the loss of nerve cells in several different areas in the brain and spinal cord that control the autonomic nervous system and coordinate muscle movements.  The loss of nerve cells may be due to the buildup of a protein called alpha-synuclein in the cells that produce dopamine, a neurotransmitter that relays motor commands in the brain.

Is there any treatment?

There is no cure for MSA. Currently, there are no treatments to delay the progress of neurodegeneration in the brain. But there are treatments available to help people cope with some of the more disabling symptoms of MSA.

What is the prognosis?

The disease tends to advance rapidly over the course of 9 to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure.

36 thoughts on “M.S.A. ( Multiple System Atrophy)

    • you are right, but this is Al’s wish, so to speak. I think he is telling me in his own way that my constant efforts are a waste but in my eyes I will fight to the end


  1. I never thought I would find myself admiring a poem about, this monstrous, diabolical, insidious
    You expressed your feelings and emotions very well.
    I pray for Alvin constantly, and you, Terry!


  2. Many times i think the relationship between you and Al reflects how God relates to the people He created, especially His Church…in its own way.

    I have never heard of MSA… but I’m sure that in my career in Neurosurgery God may show me a way to deal with this disease and help give people like Al a normal life again.

    If you had never shared your story I would have not been inspired with this.

    Thank you.


    • When a person has M.S. A. it act as Parkinson’s for a few years. M.S.A. affects the nerves along the spinal column and then the brain. Multiple areas in the brain are affected and this is where the two diseases differentiate. Also M.S.A. won’t respond to the medications for PD. The outlook is grim and shorter than P.D. also


    • I hope so. Our father passed a way from bone cancer and that was a very painful disease for him. For Al there is great pain but it continues on much longer than cancer. Both are terrible. But as you and I know, illness has never been a party. I have read they are experimenting with mice still as this used to be called something as in the sixties. I think Skye Syndrome?


    • Al can smile. His movements are not working by the nerves in the brain being broken or disconnected telling the body parts what to do. He can sit with a tooth brush in air waiting for his arm to move to brush his teeth. He can no longer hold his head up. His nerves are tangling the muscles as the muscles shrivel up. He can no longer stand on a whole foot. The muscle has shrunk and he will try to stand on his toes. Sometimes his leg will freeze in mid air and stay there for an indefinite amount of time. Al has C.A.D. His heart is very weak. When he tries to have a B.M. he gets terrible chest pains where his heart is struggling to help Al work at it. He sometimes chokes on his foods. Foods are mechanical soft with trouble swallowing. Gurggling sounds can be heard when he lies down as the saliva remains as he slows down his swallowing process. His death will most likely come from Aspiration or his heart stopping. It is a very fast illness. Just two weeks ago Al could pivot when transferring. Now his feet don’t move when he stands. Six months ago he walked with assistance. Tremors can be horrible. The voice softens, he is very hard to understand. He is incontinent also. The bladder is affected by this disease. It is multiple in effects, I hate it


      • Sounds like he’s completely disabled (well almost) is there anything good he can do? There must be something Al can give


      • he gives his best. He is an adult in a young child’s mind. He hurts 24/7, but he keeps telling me he is trying. What else could I ask for? Sometimes he can be a big cut up and giggle but I am seeing those days less often. He can no longer read small print or writing on cards. He loves coca cola. He is obsessed with it and police cars from the fifties. He can not dress himself, although he tries to lift his legs to help put briefs on. He struggles but can sometimes brush his teeth. He tries but usually eats with his fingers. He is amazing at the facts he remembers. He knows all about the Presidents. He is very opinionated on the government today. He calls most of the congress liars. He can not tell me what he had for lunch today but he can tell me things from back when he says he was two. He used to read and years later could tell me what chapter and what page something happened in. He had an amazing memory


      • Al still has a dream but I don’t think I can pull it off. I wrote to the Coca Cola plant a couple of years back and told them how crazy Al was about their product. They wrote back in return and sent Al T-shirt, and advertising items. They also invited him to tour the plant. I just recently went to the Make-A-Wish web page and was going to post a wish, but discovered it was for children. Sad for me, I was hoping somehow I could get him to Atlanta Georgia just one time, just for one visit, but I could not do it alone. He would have to be flown. It is not an emergency for him but a great desire and deep wish.


  3. I honestly understand how he feels Terry, it’s an exhausting condition ~ whenever I feel that I just can’t go on, having someone say, “Deb, can you get thru the next 30 mins?” I usually realize that I CAN trust God for the next few minutes & that’s how far I go… it strengthens the mind to stay in the moment, it builds my faith, my courage. My prayers are ever with you.


    • I think I live this way too. Not only with myself at times but with Al’s illness. He has guts. He has courage. I see tears shed often, I can feel his pain, but he keeps trying over and over. Hugs my friend


  4. something that I didn’t know until the very next day that we got a delivery from the Veterens (My Grandpa was a vet in the pearl harbor war) was liquid ‘vicodin’. so if Al has trouble with solids just know there are so many options out there. *hugs*


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  6. I just hate that Al feels this badly both physically and emotionally. I am so glad he still is able to communicate with you at this point. I hope they are able to come up with a cure soon, or at least pin down where it comes from and why people get MSA. It won’t help Al, but this tragedy may be kept at bay for scores of others.


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