I am moved to give to CurePSP because I want scientists to have all the resources necessary to find a cure, a way to put in remission, or better ways to treat the symptoms of PSP and CBD. Watching my dear, deceased Mother ravished by these two horrible neurological diseases was heartbreaking. These two diseases are insidious and cruel. We need to find a cure and I hope my contributions will help make this a reality.
Victims of PSP and CBD fall backwards, eventually get gravely distorted vision, experience awful pain in some extremities, eventually cannot write or feed themselves, and eventually cannot take care of themselves. It is wretched to watch a loved one suffer so we need to find a cure, or something to stop the progression of these diseases as soon as possible.
Please help and give to CurePSP. Every penney, nickel and dime counts!
Review from #MyGivingStory
Seeking a Treatment for Progressive Nuclear Palsy (PSP)
PSP stole my husband from me in 2006. About 3 years before he died we both realized something was very wrong. Bob fell unexpectedly, had double vision, and definite signs of cognitive loss. His right leg did not work well for him. We sought medical help but received only a misdiagnosis- or Alzheimer's and then to explain the physical symptoms- myesthenia gravis- a very unlikely combination of illness to appear at the same time. It seemed to me as though a label was slapped on my husband and we were sent away. However an ophthalmologist who was mystified by Bob's symptoms suggested we rule out PSP. I got onto the Cure PSP website to study the symptoms and then realized they fit Bob's condition. We found our way to a university Neurology Institute where we got the correct diagnosis. But I knew the doctor there was struggling to tell us the facts. Cure PSP gave is the information we needed to manage this fatal disease as well as possible and let us know what to expect. We attended a free conference for patients and their families. So we could get on with the remaining time we had together and make it good. Every year I will give in Bob's memory as long as I live. We don't know if it is inherited but I want a cure to be found for all those who are following us through life.
Review from #MyGivingStory
I would like to see an end to Progressive Supranuclear Palsy, PSP (www.curepsp.org) because it is the most devastating disease and no one should have to suffer through it ever again! My experience is very personal in that I lost my 44 year old husband, his mother and his brother to this dreadful disease. As the name implies, it is a progressive brain disease that gradually robs one of all their motor functions, as well as speech, control of emotions, thought processes, swallowing, eating and eventually breathing. It is a rare disease, therefore receives very little funding for research compared to other well-known diseases. There is ongoing research, but it's a very slow process with limited funding, and if you're the one suffering, a cure cannot come too soon. Even an effective treatment to stop or slow the progression would be helpful. People usually decline between 5 to 8 years before dying from the disease. No one has beat it yet, but there's always hope. Please consider this very worthy organization as your non-profit charity. The organization was a lifeline for me during the five years of my husbands illness through an online support group and other information.
Review from #MyGivingStory
I as well as my family have always been involved with causes. Unfortunately my donations have not always been huge. My mom who died because of PSP was an international artist. She was very talented, and wanted to use her art to help others rather than make her fortunes.
Paintings were donated to auctions for various causes, including AIDS. She donated paintings to the Grammy's and thankfully they did very well with her art.
Her art has brought in money to several non profits to benefit children as well as hunger. This was always important to all of us.
I am hoping that still in my life time a cure will be found for PSP, and other similar diseases.
When my mom began her journey with PSP, doctors had no idea what she had and there was a great deal of misdiagnosing. Once she was diagnosed, we really did not fully understand this horrible illness.
I'm glad that there is a forum for PSP, at this point. I was able to donate products that I still had, and that others could use for their loved ones.
I am also hoping that my mom's artwork could be used to benefit research projects for PSP and other similar diseases.
Review from #MyGivingStory
My Dad, Mark Rubin, inspires me to give to CurePSP (www.curepsp.org). This July, it will be 4 years since he died of Progressive Supranuclear Palsy (PSP). He was my inspiration, my hero, my mentor and my best friend. He never gave up and selflessly gave of himself. PSP completely took away the Dad I knew and everything that made him who he was. I give in his memory in the hope that other people won't have to suffer like he did.
PSP is an uncommon brain disorder that affects movement, balance, speech, swallowing, vision, mood, behavior, and thinking. The disease worsens (progressive) and causes weakness (palsy) by damaging certain parts of the brain. Currently there is no effective treatment or cure for PSP.
My Dad would drive three hours to my college just to take me supermarket shopping for 30 minutes. My Dad video-taped and made audio cassettes for his car for every musical performance I was ever in. My Dad sent me and my college roommates 100 pounds of chocolate on Valentine's Day…just because. My Dad blew up life-sized versions of pictures of my children to hang on his office wall. My Dad came over to my house every day after I had my first child just to see and hold my son for 5 minutes. My Dad never got off the phone with me without saying I love you. This was the kind of Dad I had.
I first knew there was something really wrong when he fell down a flight of steps and put his head through a wall…and he didn't know how it happened. I knew it when he couldn't remember common words when he was talking to you. When he slurred his speech, when he would choke every time he ate, when he bought my Mom birthday cards for Mother's Day and forgot my birthday and didn't seem to care. I promised him that I would take care of him...that WE would figure everything out.
I give to CurePSP so that we can continue to fight for a cure and give hope to other families that are devastated by this disease…to help THEM figure out what we weren’t able to solve.
Review from #MyGivingStory
My Hero, once told me I could be anything that I wanted to be. I spent several trips fishing or hunting with my father and he let me ramble on and on. I wanted to be the first woman President!! In 2015, we still have yet to experience a woman president but the possibility looms. I no longer have my Hero! My Dad died on July 15, 2010 from a disease I had never heard of PSP - Progressive Supranuclear Palsy.
My Dad was proceeding along in life just fine as he had just retired and was looking forward to retired life. He and my mother had just bought a new home in 2006 in a quiet area away from the city in which they had resided for several years. Dad had gotten himself a little step-side Ford PU - bright red and he seemed very content. A short time later family members began to notice odd behaviors we had not witnessed before. Dad would leave a room and then return looking as if he was lost and scared but then upon recognizing a familiar face would proceed right on into the gathering. He also began to cough and struggle while eating and became very particular what he would ingest. He also began to take a tumble every now and then.
Dad went to his primary care physician and they did the same 'Parkinson's' tests twice!! His doctor was sure he had Parkinson's but could not validate that diagnosis. Everyone was concerned but no one knew where to turn next. During this time of testing it was discovered my Dad needed to have a spinal surgery near the base of his head as his bone was very fragile and there was a space that needed to be repaired before Dad took a fall that could render him paralyzed. Dad was not a very good patient. This behavior was not typical of my happy go lucky Dad. He was irritating nurses and pulling out his IV's. The downward trend in behaviors and falls continued.
My sister was a nurse and felt an appointment with a neurologist was in order. Within fifteen minutes of my Dad walking in the door he gave us a PSP diagnosis. The Dr. said he knew the moment he saw my Dad's fixed, gazing, dull eyes. He also said Dad was at risk for choking to death and needed a feeding tube. In 2009, my Dad was admitted to a nursing home. He fell in the middle of the night one night and hit his head on the bathtub and tried to not let anyone know. The hospital said home was no longer safe for him. Dad fell again in the nursing home on July 4, 2010...he died July 15, 2010.
I give to CurePSP and we made CurePSP a memorial for my Dad because I want more people to be educated and to know about CurePSP and how they can help people with this deteriorating disease. I learned more about this disease after my Dad had died and wished we would have known about this foundation and the information we could have gained while he was still living.
I will continue to give to CurePSP as I am able and to pray for the many families affected to learn early on what can be done to make end of life easier on the patient and their families. My Dad is still my Hero! I continue to pass on to his grandchildren that they are capable of being anything their heart desires, and I know my father smiles every time he hears me say it.
Review from #MyGivingStory
Cure PSP.org
My husband’s diagnosis of PSP came as a terrible shock.
For a number of years he had experienced the onset with vision problems and falls but neurologists were unable to make a specific diagnosis. Instead, we were told all the illnesses he did not have.
I went to my usual source, the computer, to learn more and “Cure PSP.org” popped up. I followed the link and, though horrified to learn the specifics, I was better able to plan and deal as best I could.
The site enabled me to copy and present materials to “educate” the professionals who could help delay or alleviate his symptoms. It told me of Dr. Lawrence Golbe, who made the final diagnosis. It tuned me into the webinar hosted by Janet Edmunson where I learned of many things such as the assistance of the V.A. and Hospice. It notified me of support groups.
We lived my husband’s last years as best we could. My husband was a fighter and wanted to live and do. We attended concerts and theatrical productions, audited college courses, and dined out with our friends and family. He maintained a business relationship until his last month.
Without the assistance of the organization and the information it disseminates, people who have to deal with PSP will find little to help them. I will be forever grateful for its existence.
Review from #MyGivingStory
Wow, only 200 words to describe my Dad and PSP. So very difficult, for so many reasons. PSP is a theif. It's a breaker of hearts and dreams for any future. In my child eyes, my Dad, or Pops, as I fondly called him, was a superman. Strong but with a gentle spirit, that I have yet to meet since, and doubt I ever will again. His hands showed hard work to feed his family and his mind was a smart one to envy. Slowly, my superman began to fail, he began to look at me with a blank gaze of someone I didn't know. I saw my superman fall. Heart wrenching memory losses and painful limb tremors took over. People laughed behind his back, because he wore sunglasses while inside. He wore them because of pride , because of the shame he felt from people whispering about his staring watery eyes , that could no longer blink. They did not see my superman behind those glasses, they knew nothing of the admirable man behind those shades. PSP tried to steal my superman away. But, PSP lost, because my Pops purpose was stronger than anything PSP could ever remove. I share this with most loving memories of the beautiful life you gave to me and my siblings. Lessons we will pass on for generations. Gone, but never forgotten. Love you to the moon and back Pops. Love, Dawn
Review from #MyGivingStory
Too young too soon!
My husband Jim was diagnosed in 2007 with PSP at the age of 55. He had just retired after 30 years of working at the same company then having symptoms of confusion, balance problems, and dizziness for a year. Finally after seeing several doctors and a neurologist we went to the Medical Univerity of Georgia where we were given the bad news. For seven years I watched him go from a very athletic individual to a weak, frail, and helpless person totally dependent on me to get him through the day. We went through therapist, caregivers, and finally hospice to help him through this horrible journey. He died on July 29, 2013 just one week after his birthday. He left behind two wonderful daughters and three grandkids that loved him very much. After 43 years of marriage I did not want to give him up and let him go but knew it was for the best as he would no longer suffer with this horrible disease and be whole again. It is a comfort to know that we will see and be together again one day.
Review from #MyGivingStory
My mom would have turned 60 this week. If she hadn't lost her battle with a monstrous disease. But in November2013, she did. She battled an extremely rare neurodegenerative disease called Progressive Supra Nuclear Palsy (PSP) for over 6 years, slowly losing ground.
Having to deal with an unexpected sudden death of a loved one is a terrible place to be in. On the contrary, awareness of an impending death is like having to look at an archer slowly sharpen his arrow, with the full knowledge that is being prepared for you and can strike you anytime. You are then at the mercy of a flick of his/His finger. We witnessed this process in all its glory for over 2000 days between 2008 and 2013.
“Hope Matters” is the tagline of Cure PSP, the most prominent PSP care group in the world. And until much later I did not realize the importance of ‘hope’. My mom was a fighter. She fought until the very end. But what matters and what makes her a hero is that she fought with hope until the very end. She knew it was an incurable disease. Yet, she never gave up. She went to every single one of her doctor’s appointments with a hope that there might be some good news waiting for her -- probably some new medicine might have been discovered, or a new surgical procedure might have been found to cure her disease! She never missed a single dose of her medications, hopeful that it will do whatever little good it can. Every time a medication was changed, a dose was altered, she would do her own little test --trying to walk without anyone's support, a task she knew fully well she could not. A test that had almost always ended unfruitfully. Despite some falls and bruises, and multiple rebukes, she would wait for an opportune time, when she could try this without catching anyone's attention. It was only a hope that some medication might have worked and made her condition better.
One of the later symptoms of PSP is a condition called 'dysphagia.' Here, swallowing becomes increasingly difficult as the disease progresses. Let alone giant pills, swallowing even mashed potatoes becomes an ordeal. In her last few months, despite immense pain and discomfort, she went through this pill-swallowing ordeal four times a day, every single day. Even when we missed giving her a dose, mostly to save her the pain and choking that would follow, she would adamantly ask for the pills and willingly go through the ordeal. For me, that's hope, right there, in its purest form. She was hopeful that someday, someone, somewhere, would find a cure to PSP. She fought until her last breath, quite literally here, as on her last breath she choked on a small sip of water. Until the very end, her mind did not give up. It was her body that betrayed, while her hope was present even in the most hopeless situations.
So ladies and gentlemen, here's some unsolicited advice. Never lose hope. When you think that you might miss a goal, a bus, a train, a meeting, or a deadline, walk a little faster, run a little longer, work a little smarter, and try a little harder. Like my mom would often say, 'you never know if you are going to make it until you make it.'
We have supported #CurePSP periodically through small donations. Wearing their 'Hope Matters' wristbands has led to unexpected conversations at unexpected places, giving me a chance to raise awareness. Please #givethanks to CurePSP whose mission it is to raise awareness of this cruel disease and host support group meetings for caregivers and their families. CurePSP also strives to advance research that can cure this Prime of Life debilitating disease.
Review from #MyGivingStory