Trish Simpsom - Paraneoplastic
Donation protected
I have had the Mom everyone always wanted growing up. She is beautiful, kind, caring & would do anything to help anyone. She always did everything she could for my brother and I. The day after she turned 18 I was born 3 ½ months early. I only weighed 2 pounds, and the doctors said I had a 20% chance of living. She never gave up on me even then. She told me she always knew I would be ok. My mom has always supported me through every up and down through my life, and was always looking out for me. Mom has always been a courageous person. She went back to high school and graduated a year after I was born. It took a lot of guts to go back to school then. She never gives up & even today says, we just have to take it one day at a time & enjoy what we do have.
She always made sure my brother and I had everything we needed. She has sacrificed so much for us. I’ve always been so proud of my Mom. She never felt she did anything special, but she has always been a good example of how you should treat people and help them even when you’re down to your last dime.
Before she fell ill, Mom owned and operated her own furniture business, drove, and lived on her own. She was totally independent and aside from some moderate skin cancer was completely healthy. But, On February 15th, 2013 Mom's world, our world was forever changed. It was like a light switch going off. She was very anxious, confused, saying things that didn't make sense and extremely upset. Her short term memory was not working and she had symptoms of a stroke.
A month later her memory became worse and she began losing strength in her right hand until it no longer moved at all and started spreading to other arm.
The first neurologist we saw said that Mom’s problems with her hands were caused by Carpal Tunnel Syndrome, but had no explanation for her memory problems. As time went on her hands became weaker and memory worsened. A few months later, the 1st neuro left message on my cell phone saying she needed emergency surgery on her neck, because 3 discs on her neck were compressing her spinal cord. She had the surgery but it didn’t help.
So we found a 2nd neurologist, who ran a lumbar puncture (spinal fluid sample) and she tested positive for Cryptococcal meningitis. This was quickly determined to be a false positive. Many months later, it was determined she had MMN (Multi Focal Motor Neuropathy) a rare disease. That impedes your body's motor functions because of the degradation of the nerves. The condition makes it hard for the nerves to send the electrical signals that move your body, which makes your hands and arms very weak and sometimes useless. After the diagnosis she began monthly IVIG treatments, which improved her hands a little, but not her memory.
Searching for answers as to what was causing Mom’s memory problems. We went to UTSW and after a lengthy evaluation doctors suspected a second rare disease, Paraneoplastic Syndrome.
Paraneoplastic syndrome occurs when your immune system suspects there is a cancer & attacks the good and bad cells. And for Mom the good cells are those that affect her short term memory in her limbic system. Cancers commonly associated with these disorders include lung, breast and ovarian, as well as cancers of the blood. In most cases, paraneoplastic syndromes of the nervous system occur before a cancer is diagnosed. In her case, NO cancer has yet to be found. This means her immune system may continue to attach.
We went to third neurologist who had seen patients with this rare disease. None of the other doctors had ever heard of Paraneoplastic Syndrome. After a lengthy evaluation and a long series of tests we had our diagnosis 1 year and 5 months later.
Not only have these two diseases changed Mom’s life forever; it has changed life for our entire family. It’s heart-wrenching to watch someone you love have their life and independence taken away. There is no cure for Paraneoplastic Syndrome but treatments can help. She goes to numerous doctors, Occupational Therapy, and Physical Therapy every week. We continue the only known treatment and pray it will help.
I’ve tried every avenue you can imagine for help for Mom. $1300/month, Social Security combined with Retirement from Ben Hogan doesn’t cover the doctors’ bills. We are going broke trying to care for her. I worked 6 part time jobs prior to Mom’s illness but had to cut back to 3 to care for her. We have 1 son in college and the 2nd applying for Grad School. The past two years have been physically and emotionally exhausting. It tears your heart to pieces to watch your mom lose her short term memory and physical independence. She is on Star Plus Program waiting list but she must qualify for it once her name comes to the top of the list. That wait could be 2- 4 years. It’s so frustrating.
For those who know my Mom you know she would do anything to help anyone so I am trying EVERYTHING to help her get the care she needs. It’s not easy to ask friends, family, and strangers for help but when you love someone you never give up and do whatever it takes. My hope is she has touched your life in some way as well. This goal will help her with care for two and half years.
She always made sure my brother and I had everything we needed. She has sacrificed so much for us. I’ve always been so proud of my Mom. She never felt she did anything special, but she has always been a good example of how you should treat people and help them even when you’re down to your last dime.
Before she fell ill, Mom owned and operated her own furniture business, drove, and lived on her own. She was totally independent and aside from some moderate skin cancer was completely healthy. But, On February 15th, 2013 Mom's world, our world was forever changed. It was like a light switch going off. She was very anxious, confused, saying things that didn't make sense and extremely upset. Her short term memory was not working and she had symptoms of a stroke.
A month later her memory became worse and she began losing strength in her right hand until it no longer moved at all and started spreading to other arm.
The first neurologist we saw said that Mom’s problems with her hands were caused by Carpal Tunnel Syndrome, but had no explanation for her memory problems. As time went on her hands became weaker and memory worsened. A few months later, the 1st neuro left message on my cell phone saying she needed emergency surgery on her neck, because 3 discs on her neck were compressing her spinal cord. She had the surgery but it didn’t help.
So we found a 2nd neurologist, who ran a lumbar puncture (spinal fluid sample) and she tested positive for Cryptococcal meningitis. This was quickly determined to be a false positive. Many months later, it was determined she had MMN (Multi Focal Motor Neuropathy) a rare disease. That impedes your body's motor functions because of the degradation of the nerves. The condition makes it hard for the nerves to send the electrical signals that move your body, which makes your hands and arms very weak and sometimes useless. After the diagnosis she began monthly IVIG treatments, which improved her hands a little, but not her memory.
Searching for answers as to what was causing Mom’s memory problems. We went to UTSW and after a lengthy evaluation doctors suspected a second rare disease, Paraneoplastic Syndrome.
Paraneoplastic syndrome occurs when your immune system suspects there is a cancer & attacks the good and bad cells. And for Mom the good cells are those that affect her short term memory in her limbic system. Cancers commonly associated with these disorders include lung, breast and ovarian, as well as cancers of the blood. In most cases, paraneoplastic syndromes of the nervous system occur before a cancer is diagnosed. In her case, NO cancer has yet to be found. This means her immune system may continue to attach.
We went to third neurologist who had seen patients with this rare disease. None of the other doctors had ever heard of Paraneoplastic Syndrome. After a lengthy evaluation and a long series of tests we had our diagnosis 1 year and 5 months later.
Not only have these two diseases changed Mom’s life forever; it has changed life for our entire family. It’s heart-wrenching to watch someone you love have their life and independence taken away. There is no cure for Paraneoplastic Syndrome but treatments can help. She goes to numerous doctors, Occupational Therapy, and Physical Therapy every week. We continue the only known treatment and pray it will help.
I’ve tried every avenue you can imagine for help for Mom. $1300/month, Social Security combined with Retirement from Ben Hogan doesn’t cover the doctors’ bills. We are going broke trying to care for her. I worked 6 part time jobs prior to Mom’s illness but had to cut back to 3 to care for her. We have 1 son in college and the 2nd applying for Grad School. The past two years have been physically and emotionally exhausting. It tears your heart to pieces to watch your mom lose her short term memory and physical independence. She is on Star Plus Program waiting list but she must qualify for it once her name comes to the top of the list. That wait could be 2- 4 years. It’s so frustrating.
For those who know my Mom you know she would do anything to help anyone so I am trying EVERYTHING to help her get the care she needs. It’s not easy to ask friends, family, and strangers for help but when you love someone you never give up and do whatever it takes. My hope is she has touched your life in some way as well. This goal will help her with care for two and half years.
Organizer
Jana Elliott Engle
Organizer
Crowley, TX