Reeve Foundation Paralysis Community

My mother has been paralyzed since April 4th..She had so much life to live and now no quality of life..I dont know were to begin..she isnt getting any therapy she needs to give her a chance..insurance wont cover it..people in the medical field have been mean and insensitive we feel we are so alone through all this...I try to excersise her legs each day I know thats something but its not enough..Im so frustrated and saddened by the lack of compassion from doctors and nurses..We have her back in her own home but it  just seems she is just waisting away with depression and asking why me...I have no life..we cant get her what she needs..can I fund raise for her? Any suggestions? I want her to have a chance to get strong and maybe she will regain her ability to walk again...theres always hope...We all need a purpose to serve through all this to be advocates for the paralyzed and to speak out to hospitals and doctors who are not aware of the dangers that can arise from being paralyzed such as AD which they are NOT familiar with and my mother needs to relate to people who understand what she is going through because they are dealing with the same thing...I couldnt possibly know how she truly feels although i feel like taking care of her I am living part of that life...its so sad..we need to turn it into a positive if at all positive..

Judy

jsher11785@aol.com

Hi Judy,

Welcome, I am so sorry to hear about your mother. This must be so terribly difficult for all of you. That is something about SCI. It not only changes the person with the injury but also the entire family.

I know there are many of us here that can relate to what you are saying. The system is a very unkind place, and I often feel there is no compassion for families and patients. I tell people I used to be nice until my husband suffered a SCI. It has turned me into a real *** at times. You are constantly fighting the system to just get the basics of what you need. I truly understand your frustration.

What level of injury is your mother? Do you know her ASIA score? How was she injured? Certainly you can do fund raisers to generate money, but that is usually short lived. Your best bet is to really push her insurance company. Is she Medicare or Medicaid eligible? I have fought my husband’s insurance along the way these last 7 years. I have lost some but have won more than lost through the appeals process. It’s always worth the fight.

What I will say to you is there is always hope. Hope that she will one day walk and hope that her life will still be meaningful even if she doesn’t. I’m like you, I don’t pretend to understand what my husband faces every day, but I know his worth to me and our family isn’t whether he can or can’t walk. You are still very early in the process. It takes time for everyone to adjust…I’m talking years not months. Hopefully your mother will see that she can have a joyous life again, sure things will be different but joy is still possible no matter what function she regains. Please stay in tough with us here. Best wishes to both you and your mom.

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Hello;

I am sorry that this has been frustrating, overhwleming and sometimes just plain awful to get the things for your mother that she needs.  Your mother is a newere injury and I know that there are places on this website that she or you can ask questions and get materials about AD and all the changes that this new chaotic world has thrown at you.  As far as fundraising there is a great catastrophic illness fundraising program for individuals called NTAF http://www.transplantfund.org/    Take a look and see if it would help your situation. 

Olga:

I'm so sorry to hear about your mother. I know how hard this can be. Yes it is important to keep her muscles moving. Please don't ever feel hopeless or helpless, your heart is in the right place and your frustration is justified.
My left arm has been paralyzed from a SCI for 3 years. I was fired from my job, lost all independence and went through my own stage of depression. Since then I have not been hired ANYWHERE, the ADA and EEOC are not helpful. But it is important to stay positive and maybe look into any type of fund raising events. I do believe that is a great idea to start. Have you tried Medicare/Medicade? Physical Therapy is very important. Oh and try to ignore those idiots who stick there noses up at you, they will never understand until it happens to them. I truely wish you and your mother all the best. I will pray for her recovery and strength.

Carriann