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My plan is to put videos online with advice and education for understanding of what RSD CRPS is. Hopefully I can help at least one person, maybe even a thousand people, to live a happy life and have some understanding of this rare horrific disease.
We are also in need of volunteers to help with fundraising.
Ideas of events or even help with holding a fundraising event would be so helpful!
Family and friends of Alison Zuback are raising money for the nonprofit Help Hope Live to fundraiser uninsured medical expenses associated with Catastrophic Illness.
Alison has chosen to fundraise for Help Hope Live because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
For the past 19 years my children, husband and myself have lived through some very difficult situations including loss of family members, friends our home etc etc etc.
However, the blessings which we have been given have brought us much closer over the last few years.
I have been taking approximately 19 different medications everyday which I take morning noon afternoon and at bedtime. My husband who is the best man in the world to me has been by my side every day no matter what was going on physically mentally and emotionally. He prepares all my medications once into a weekly medication dispenser and then splits them up daily into four separate medications bottle and then supervises giving me the correct medications throughout the day. He is so dedicated to getting and giving me the best care he can going to every appointment he possibly could and has done over the past 10 years. Unfortunately, he had his own medical emergency in 2015 were he lost use of both of his legs and he had a emergency operation where the lower nerve endings in the spine had been severely pressed on by some slipped disc.
I'm sorry if I didn't describe this correctly.
After surgery, the doctor said his condition has the name "cauda equina" my spelling may be incorrect. This condition is very serious. The doctor could not tell if Mike would ever walk again. After a year being in a wheelchair, he was getting around more and more after much physical therapy and his amazing determination. However, he lost his ability to work which is why we came back from Florida to Georgia.
Terrible times and unfortunately people could not destroy our love and vows we made to God and each other. He has a bad back filled with pain his left leg has nerve damage which has limited his ability to walk. His determination to care for me and give me all he can is the kind of Love I have never seen or known before. Because I am unable to do much of anything these days so he cooks, cleans, washes dishes and all the laundry etc etc etc along with being with me 24/7 except when he is running errands including grocery shopping.
Yes, he is wonderful to me since the day we got together. I'm more than grateful for him for who he is as a person along with God blessing me and the children who are really not children any longer..
Us being able to purchase a wheelchair accessible vehicle will greatly benefit both of us.
Thank you for your support. Please share this campaign with all you can. There is no cure for my pain condition which is the most horrific pain known to man nicknamed The Suicide Disease.
Well, after I began seeing so many medical professionals, I was blessed to have found a handful of medical professionals each in different medical fields. My body was ferociously taken over by burning stabbing deep into my bones muscles nerves and the skin outside my body. I was taking so many pain medications both orally and patches on my skin in fentanyl, morphine etc along so many different medications some for this and that as well as strong antidepressants including Ability 30 mg and so on
Forgive me please, sometimes my thinking gets all tangled up and I'm unsure what comes next so .
After closing and resting my mind and body, honestly I am really overwhelmed wanting to share with you how debilitating, how cruel, unexplainable the actual physical pain is throughout my entire body from the very tip of my head through my scalp, my face, my eyes, my ears, my nose, my lips, my gums, my tongue, my throat, my neck, my shoulders my arms, my hands, my fingers, oh yeah my nose my chest my armpits my stomach my back, my spine, my hips, butt even my groin and vagina, down my legs my knee caps on down to my ankles, feet and my toes. I'm now experiences issues with loss of muscle tissue in the back of my tongue along with swallowing issues.
Grateful I wake up every morning. Unfortunately my pain in my whole head explained up above is my first sensation.
Thankfully I have an intrathecal pain pump inside my body that is set to drip drops of fentanyl to my spine which lowers the amount of horrific pain down the lower part of my body..
I'm not able to do much physically due to of course this very mean relentless pain.
I lay either in my bed or recliner all day. The ability to hold my head up has become limited.
My husband gets me everything I need throughout my day while taken care of all the everyday chores inside and outside our home.
We really need to purchase a wheelchair accessible vehicle in order to get me back and forth to all my many Dr appointments. I'm having other different technology.
Thank you.
I hope that I am giving you some kind of idea how horrible RSD/CRPS is and how devastating and badly it affects the body both inside and out.
RSD/CRPS is a neurological disease which is the most undescribable horrific pain known to man. I understand that this sounds a bit dramatic but honestly unfortunately for so many of us, this chronic pain disease is real. Many Drs use this chart for describing different pain levels a patient is generally experiencing.
The level of pain is based on the scale of 1 to 50. RSD/CRPS is at the highest level at the top #42 which is higher than natural child birth, amputation and cancer.
I ask you to please if you get a chance to look up RED/CRPS online due to the perplexity of all the different details of this disease.
It's been a very very painful journey both physically and mentally for my husband, son and daughter. My son was 15 and my daughter only 11 years old. I had just turned 42 and my husband was 38 years of age.I worked full time, worked out regularly, Coached my daughter's basketball team, secretary of my son's wrestling team and every other weekend the kids and I volunteered at the nursing home hosting the Bingo game. My husband played Santa Clause for the years I worked at the daycare as well as the nursing home. We were so blessed to have a healthy happy and loving home.
To be continued:
Hey to you for being here in order for me to share my story beginning on November 8, 2005 . I had just dropped off my daughter and son at their schools then was on my way to the office. On the way, I needed to pick up a few things for an event that was happening later that day. I was walking from the parking lot to get to the entrance when out of the blue, I found myself on my hands and knees trying to figure out what happened. Honestly, there was no one around that I noticed while I was walking to the entrance of a big chain department store. Then a young man came up to me holding out his hand to help me up. I slipped in a strip of wet paint. Bright orange paint used for the lines outlining the parking spaces.I must have slipped with my foot going straight out landing hard on my left side but also injuring my right knee.
After approximately 5 or 6 months later, my injuries were not healing but in fact becoming worse remaining more inflamed and more intense pain along with turning a bit blue and red. Then , after seeing many different Dr's, I was diagnosed with having Reflex Sympathy Dystrophy (RSD) now also labeled as Chronic Regional Pain Syndrome (CRP) known as "The Suicide Disease ".
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Help Hope Live
Note in memo:
In honor of Alison Delk Zuback
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Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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