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Living With a Mentally Handicapped Grandson

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The picture here is from the internet of a young person before the illness and after..There is juvenile disease which hits someone under twenty and then adult onset which can happen anywhere in adulthood but usually in the 30 to 40 year old range..People with it have psychiatic problems before the chorea hits..The illness is somewhat different in the juvenile from the adult..The younger the person is when it hits the shorter the lifespan..Cody is 28 and has not developed the Chorea but he has been plagued with the depression,mood swings, doing things that are wrong, and needing instant gratification..There is a med that is in its first set of trials that is showing promise but it probably won't be available for 3 to 5 more years..Cody's father came down with early symptoms at around 30 then was disabled by 38..He died at 49..Sara

Woody Gutherie

In the middle of the night a door slams The awful scent of cigarettes floats upward penetrates my nostrils Insomnia keeps him up and restless Lying here I hear, smell and know that the worst is yet to come Huntington's Disease slowly destroys brain cells Mutant form of huntingtin aggregrates within the brain It touches the connectors and interfers with the synaps Extra dopamine causes his need for instant gratification I taste the tears as they spill tumbling down Feel the his fear, his terror of what lies ahead I can hear his hurtful words as his temper flairs Thankful for his hugs when he is calm I am glad that he is able to work for inability lies ahead Unless some researcher somewhere finds a treatment If not only downhill slide is inevidible Destruction of the brain will leave him unable to even swallow Let my tears spill down, overflow touch upon my face Taste the salt as they touch my lips Let me face the daylight hours with courage and strength Today he might stumble and fall into the horrors of the disease Contest: In A Relationship With Disabled Person Sponsor: W. Thomas Markham One famous person with Huntington's Disease was Woody Gutherie If you care to you can type in Woody Gutherie on YouTube and hear him..

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Kai Michael Neumann

Date: 12/4/2016 2:44:00 AM

Huntington's Disease is sort of the worst nightmare. I did not know about Woody Guthrie and wonder as well, how it has affected Arlo Guthrie. I like your poem. Also this was one of the most meaningful contests on the soup. Congratulations on your win. Kai

Sara Kendrick
Date: 12/4/2016 5:22:00 AM

Kai Michael, There is a test now that can be done to check a person's DNA and they will know if they have the gene and if they will come down with the illness..Many people do not want to know but Cody wanted to know which wasn't good in some ways because I believe that he thought that he did not have it..If you ever meet a person with HD, you will know that they have something wrong with them even before the chorea starts..They are just different..Sara

Jan Allison

Date: 12/4/2016 12:31:00 AM

Dropping back with my congrats Sara - long may Cody continue to have more good days than bad:-) hugs Jan xx

Sara Kendrick
Date: 12/4/2016 5:18:00 AM

Jan, Thanks for visiting my work..I appreciate your well wishes..We desire the best for Cody and your wishes could help that to come about..Sara

Janis Thompson

Date: 12/3/2016 3:35:00 PM

This is a very well penned and heart felt verse. I read it several times and I'm in tears for you both but you express it so well. Congratulations on your placement. Blessings to you and your grandson. Janis 7

Sara Kendrick
Date: 12/3/2016 4:32:00 PM

Janis, Cody is doing okay..He has more good days than bad ones now but we never know when that will change..Thank you for your understanding..I feel that you understand my pain and anxiety..Sara

Darren White

Date: 12/3/2016 11:57:00 AM

It's difficult to say congratulations to you, because it is so painful. But still I think you wrote a beautiful gem of a poem about your grandson.

Sara Kendrick
Date: 12/3/2016 4:29:00 PM

Darren, Thanks for the visit to offer congrats on my placing in the contest..It is difficult living each knowing that this could be the day that the chorea starts and his decline starts pulling him into total insanity with the chorea..Sara

Jack Horne

Date: 11/27/2016 10:15:00 AM

such a heartfelt & heartbreaking poem - but you said it, my friend: "Unless some researcher somewhere finds a treatment." Keep praying & believing that will happen, as I will

Sara Kendrick
Date: 12/3/2016 4:27:00 PM

Jack, Thanks for the visit and for understanding the disease and offering that little light of hope..Sara

Joe Maverick

Date: 11/15/2016 1:58:00 PM

My best wishes are for you and Cody Sara, I am very moved by this write.' We are all subject to trials in life it seems, some more than others.' I pray for strength and opportunity for betterment here, God bless..'

Sara Kendrick
Date: 11/15/2016 3:52:00 PM

Joe, Yes, there are trials for all in this world of imperfection..I hope that there is some treatment or cure soon on the horizon..Strength for each day and just enough light for each step that I need to make..Sara

Matthew Anish

Date: 11/10/2016 9:48:00 PM

I can understand your pain since my nephew is severely autistic. Powerful write! I have seen Woody's son Arlo perform live quite a number of times. Peace & Love Matthew Anish

Sara Kendrick
Date: 11/15/2016 3:51:00 PM

Matthew, I believe that the cure or treatment for one could be an open door for the cure or treatment for the others for I believe that they are inter related..I know that if there is Alzheimer's Disease in the family there is increased incidences of Autism..Sara

Julia Ward
Date: 11/11/2016 2:35:00 PM

One of my sons is severely autistic, too, Matthew.

Ravi Sathasivam

Date: 11/10/2016 1:29:00 AM

Understand your feelings and pain. Be strong. Very touching write. Thanks for sharing it.

Sara Kendrick
Date: 11/15/2016 3:49:00 PM

Thanks for the visit..Some days are easier than others..When I am weak someone else lifts me up and when someone else in the family is weak I try to help them..Sara

Anne-Lise Andresen

Date: 11/9/2016 7:41:00 AM

- A cruel disease, no one can heal - This was a deeply moving poem, Sara - A healthy young man, a life of pain ... - We who are "healthy" have a lot to thank for - Is this your son, or grandson ? - Good luck in the contest - hugs // Anne-Lise :)

Anne-Lise Andresen
Date: 11/9/2016 2:58:00 PM

- My daughter is born with cerebral palsy, I know what you are going through - hugs // Anne-Lise :)

Darlene De Beaulieu
Date: 11/9/2016 10:20:00 AM

If you need to talk use one of my poems to do so. I will listen.

Sara Kendrick
Date: 11/9/2016 8:23:00 AM

Sunshine, This is my grandson..It is an inherited mental disease where the brain is actually destroyed..Cody's mother is our daughter and the illness comes from his father's side..Cody's father had it, his grandmother, his great grandfather, his great great grandmother and her sister..Nearly all the children in this family die from it..It comes on them at different ages but it seems to be hitting at younger ages..If Cody doesn't have any children it will end with him..His daddy's sister had children and she has the illness as well but no one has come down with it in her children or grandchildren..Sara

Probir Gupta

Date: 11/9/2016 6:12:00 AM

Very empathetic and touchy ... a great write ...

Sara Kendrick
Date: 11/9/2016 8:18:00 AM

Thanks for the kind review..I appreciate the time spent here..Sara

Jan Allison

Date: 11/9/2016 2:53:00 AM

Such an emotive write Sara it is hard to know what to say:-( It must be so heartbreaking to see the deterioration and know what the future holds if treatment can't be found to halt the disease in it tracks. hugs Jan xx

Sara Kendrick
Date: 11/9/2016 8:17:00 AM

Jan, It is hard and without God in my life I could not make it..He has to give me the strength to carry on..Thanks for dropping by..I appreciate you reading and taking time to comment..Sara

Darlene De Beaulieu

Date: 11/8/2016 7:13:00 PM

Hello Sara,I understand your pain,It is not an easy life living with a handicap person.You must be strong,and do the best you can.Anyway this is a very well done poem. I see a person not the handicap.People should do the same.

Sara Kendrick
Date: 11/9/2016 8:05:00 AM

Thanks for the visit to my page..It is a very difficult illness because when people look at a person with HD before the Chorea hits they think they look totally healthy then in the early stages of the Chorea they think they are drunk then finally they realize that there is something wrong with that person..Sara