Living through Christmas without the one who always brought the celebrations.....
Christmas traditions have always been important to my family. We started when our children were small to teach about advent. We centered the holidays around the true meaning of Christmas for us, the birth of Jesus. In our home, Sam was the one how kept the excitement going as the kids grew into adolescents and young adults. He would always pester us about when we were going to decorate? What he was getting? When are we opening gifts? Even when he was in deep depression, he tried to find some energy to drag out the tree and decorate. (I have heard stories this year of how he tried to make others happy this time of year). I know that he always asked me for some money, or help to give things to others. He was always giving away to others. Paintings, things, books, buying for "A friend" who needed a little help, their children, or someone who needed a Christmas. That was just the kind of person Sam was, even when he was barely able to cope, he gave of himself. (He could be surly, angry, and downright mean to some people, and caring to others) this is the dichotomy of Sam as well as mental illness. A friend of his told me a story of their meeting at college. She used to be so Christmas oriented. That year she was depressed and wanted nothing to do with the season. Enter Sam, the Christmas elf. He worked so hard singing her Christmas songs, and even bringing her "Christmas cookies" from the college cafe. She turned them over and they just said, "Sugar cookies". Sam got out his Sharpie pen, " Oh yeah?" wrote "Christmas Cookies" on the wrapper, and grinned his silly crooked grin. He continued all Christmas season as if it was his mission. I am sure he believed it was his mission. That was so Sam! December 2009 was a difficult year for him, but at that moment, it was important to Sam to see that Alex and a few others have a good Christmas.
He was hospitalized a few weeks later and attempted suicide a month after that in February 2010. Sam was able to reach out to others in the midst of his pain, but seldom able to say how much pain he was in during that time.
If you or someone you know is like this, GET help!
He was in programs, the programs are improving. There IS hope for people with depression, mental illness and suicidal ideas.
http://www.breakfreefromdepression.com/
Our mission is to reduce suicides. To bring awareness to the risks, the trauma that suicides do to the family, the friends and community. We also want to help educate on what can be done to prevent suicides. Finding appropriate treatment IS POSSIBLE>
If Sam only knew how much people REALLY did love him. How much hurt he caused perhaps we could have prevented loosing him.
http://childrenshospital.org/clinicalservices/Site3176/mainpageS3176P0.html
We have been hit by so much ignorance this holiday. We want to educate and help others.
http://www.suicidepreventionlifeline.org/
Thursday, December 29, 2011
Sunday, November 6, 2011
Reaching out to people effected by epilepsy or mental illness....
OUR MISSION: a of epilepsy and mental illness, bullying, and assist people in obtaining help to reduce suicide.
3. Veegpanions have been part of our work for seven years for patients entering epilepsy testing, surgery, or other medical challenges. We have added many versions over the years including a G-Tube doll with book, C-pap, AFO's, VNS, and several other adaptations for special individuals. We have sent roughly 260 to five countries. These have always been free to the individuals. Now these therapy creations (plush dolls, bears, cats, dogs, or monkeys, ) will be part of Preventing Teen Tragedy for our Epilepsy Division. They remain free to patients. These started as therapy for the challenge Our desire is to assist individuals and families effected by mental illness or epilepsy through
support, information, and advocacy. Our purpose includes advocacy education for
individuals, families, and the community about epilepsy and mental illness. Our goal is to
reduce the stigma associated with these disorders.
Vision: Forming cohesive teams between individuals, families, and professionals is one of the
long-term goals of PTT. The appropriate medical care and educational needs will be met
these working teams learn to communicate well. The care in Northeastern Connecticut needs
improvement. Awareness programs for both epilepsy and mental illness need to begin. We
envision barriers coming down for both individuals with epilepsy as well as mental illness.
3 DIVISIONS of PTT
1a. personal advocacy learning how to obtain the best medical care for yourself or a loved one. We have learned that developing a positive working relationship with a doctor is a valuable tool to successful treatment. We can assist in teaching while still guarding your privacy.
1b. Legislative advocacy. Joining with other foundation on initiatives that effect epilepsy or mental illness to form the strongest voice. We must stop the stigma of both brain disorders.
2. Suicide prevention. through information, education, and support throughout the community we hope to help reduce suicide. Proper treatment includes support programs for families and individuals. Sometimes this can include education for the community where the individuals live, work, go to school for their best quality of life. Together we can try to eradicate the stigms our family endured because of Sam's epilepsy and a desire to deliver therapy tools to others going through challenging times during testing. I will include the story of "How VeegPanions began" in this blog.
Story of Veegpanions
How VEEGpanions were born. My son had several VEEGs that were not only frustrating and unsuccessful in finding a seizure focus they actually found him taken off medication. We were told he had outgrown his seizures and all was great. While this is usually welcome news, his seizures continued! We were so frustrated and scared! His neurologist at that time insisted that that other neurologist could not have been mistaken, even though his hospital record showed a very brief seizure and some abnormality yet the report said all was normal. These things haunted us. We saw the frustrations mount in our son as well. Thankfully, after 3 very long years, he is back on seizure medications and is doing much better, with his seizures becoming better controlled. He declined in those 3 years to the point that we feared ever seeing him get back to where we see him today! We are amazed at how far he has come, now! It has been a difficult time, to say the least. We began making VEEGpanions during those difficult years. We used that time to reach out to others who needed to go through the Video EEG testing and choose to make it a positive thing, rather than dwelling on our extremely negative experiences. We saw the joy in reaching out to others, trying to offer reassurance to them and it has been a great thing to bring us peace, as well. As a member of the Epilepsy Foundation website, I was often asked about VEEG or longterm monitoring. It was difficult for me to answer these questions, but I could not just answer from my own experiences. I felt it only right to research and answer that it can be helpful for others. We had friends who needed to send their own children to VEEG monitoring and they turned to us for advice. Not wanting to scare them with our own negative experiences, I searched for a positive way to reassure them, calm a frightened child, send a giggle, anything………….I thought of making a cuddly thing a small child could relate to, toss around, talk to, yell at, be a kid with, and look like. HEY, let’s put some EEG “leads” on a bear and see what happens. These “Veegpanions” have changed many many times over in the last two years. The very first one, I think, went to a boy names Wesley. He helped name them VEEG. He will always hold a special place in my heart as he has also had a hard time finding the best treatment, just as my son has. VEEGpanions were named with his help. The first one hand delivered, was the hardest one for Sam and I. This one went out to a little girl, aged 2 who went to the same horrid place that still haunts my son’s memories today. I had made promises to the mother that this doctor could help her little girl, even though we had not had the best experiences. Sam was determined to go with me to help little Emily. I was skeptical since he was not overly fond of toddlers. We visited her and spent many days as she stayed for her telemetry there. She has a special place in our heart and always will. ONLY this child could give my son strength to reenter those doors! “mom, if I can go and help her, I need to go….”
Soon after VEEGpanions were born another friend’s son was having his VNS implanted and she asked if there was anyway for that to be done, too. Again, back to the drawing board. This “implant” has also been through many upgrades to where it is today. It is sewn to the chest, with cloth “wire” leads onto the neck to somewhat resemble the real thing.
Each bear, ( plush doll, cat, dog, monkey…..) has the child’s name on a wrist band somewhat resembling a hospital band as well, (the earlier ones had a ribbon around the neck)……
I hope this explains how we started this production. I have maintained this quietly, mostly to ecommunities children, through word of mouth. I have kept this out of pocket so far, but a few did donate to assist this to keep it going. I have continued this to keep a smile on the children’s faces as well as the mom’s while they face these tests. I have seen more than a few doctors, nurses and techs grin as well. I even heard of two ecommunities families who met because of these bears! They were in the same unit and the techs were talking because the two girls have similar bears!! One mom wrote me to let me know!!
As of Sept 2011 I have sent out around 260 , I lost track at one point, but that is my best estimate….I plan to keep this going….Keep the smiles going!
(This was written originally in about 2006, just the numbers were updated in 2011)
November is Epilepsy Awareness Month!
The fact that November marks the 6 month mark since Sam left us and Epilepsy Awareness Month arrive at the same time seems rather ironic to me. Sam was 10 years old when he approached me with the words, " Mom, you always told me that God uses the bad things in our lives for something good. PROVE IT!" I could not let him down! I was challenged! I knew that God had always done this in my life, including when my own father had died, but showing this to my son, who had a chronic and serious disorder, this was another thing!
I went on-line and started to search. "Epilepsy"......I found the National Epilepsy Foundation and the "Speak Up/Speak Out Kids Speak Up program"; It involved applying and if chosen a child and family member traveled to Washington, DC in March for the Public Policy Institute of the Epilepsy Foundation to meet others with epilepsy then head to Capital Hill. They would have meetings with their representatives and explain their personal stories of the impact of epilepsy. WOW, this sounded pretty neat. I explained this to Sam and asked if he wanted to apply. He did want to try and was chosen as one of 30 children across the United States, the only one from Connecticut. The EF Affiliate called me stating, "Who are you, I have never heard of you before?" I explained that I had not heard of her before either nor had I known there was such a thing as the Epilepsy Foundation in the three years of my son's condition.
I had Sam and his sister Anna write pamphlet style booklets in order to prepare for our trip. I had done some research on the EFA website about advocacy because I like to be prepared. The creation of the leave behinds provided great therapeutic release for both of them as we discussed the contents. I have taught many families how to create this type of book in the years since that time. I have also strongly recommended Kids Speak to dozens of Families. Sam went with me several times. Each time provided valuable and different experiences for him.
Telling members of Congress our personal experiences provides specific information that the member or health legislative assistant can use to vote appropriately. Epilepsy is a disorder that can be variable. It worsens for some people. There are co-morbid conditions (goes along with) such as depression (in 11-60% of the people with epilepsy according to Dr.Andres Kanner), Learning problems can occur, ADHD, behavioral problems, sleep disorders, social problems, suicide rate is higher, 25,000-50,000 people die annually due to epilepsy or epilepsy related causes each year. 50 % of children can outgrow their epilepsy by puberty. Their is no central clearing house for information to know if any of these cases are among those that have their epilepsy come back later in life.
1 person in 10 WILL have a seizure at some time in their life. 1 person in 100 has epilepsy, between 3-5 million people has epilepsy in the US. (the discrepancy is because of some who are either not diagnosed or are not being currently treated for their epilepsy. ) People with epilepsy CAN do things. Some have been Congressmen who helped write the American with Disability Act, Another is an Olympic Hockey Player, we can be writers, actors, teachers, social workers, business people, IT specialists, artists, doctors, neurologists or anything else. Epilepsy is a spectrum disorder that does impact the entire family. The fact is, epilepsy is not something people need to fear, just be educated about! Epilepsy is not demon possession. It is misfiring neurons that cause a reaction elsewhere in the body.
Sam continued to be an advocate more for his depression for the remainder of his life. Most people who have ever met me know I am a passionate advocate. (yes, I talk to anyone!)
I HATE epilepsy. It robs people of life. I LOVE people WITH epilepsy! They all amaze me. DO I regret having epilepsy as part of our life? That is a very hard question. I regret the pain my son endured. (but everyone has something, right?)....I do wish Sam and Anna could have held the closeness they first had. Epilepsy and mental illness changed the friendship they initially had. We have had the privilege of knowing some wonderful and inspiring people we would not have known if epilepsy had not been in our lives. I do believe I am stronger because of what has happened along the way.
Monday, October 17, 2011
Preventing Teen Tragedy is now a 501 (c) (3) Nonprofit Public Charity organization!!
We filed for incorporation on May 3rd for PTT. (Preventing Teen Tragedy and for adults as well) The mission is to reduce trauma, stigma, and struggle to the individuals and families affected by mental illness and or epilepsy. We live in Northeastern, Connecticut. We know people all over the United States and a few other countries. Sam was known as well. Anna is also very well known. Both of these very common conditions affect both the individual and their families. This is why we are trying to work for both conditions. It is our desire to assist with information, support, and teaching advocacy in obtaining appropriate care. We hope to work at raising awareness and reducing the stigma and discrimination for both conditions.
Bullying is common with both epilepsy and mental illness and this must be halted. Education and understanding can reduce this misunderstanding of two dreadful chronic and severe medical conditions. WHY mistreat people just because they have medical conditions that you do not understand?
The name of our organization comes from our son Sam's t-shirt company. He was 16 years old and the one year anniversary of this first two suicide attempt came. He was celebrating life and wanted to raise awareness of suicide, depression, and reduce risk of teen death and young adult suicide. He was a passionate advocate!! He only had this business, selling T's, hoodies, bookmarks, and anti Abortion t's for about a year before worsening depression crashed in upon him and signs of schizophrenia began. We tried to encourage his artwork to continue and we would do the rest. He just felt unable to continue this work.
We are now taking up his work where he could no longer bring his designs to the public. We want to try to reduce suicides, teach about the dangers of depression, and that treatment can work. Sam reached out to a young man just before he died telling him to obtain help for his depression, Sam was just never good about telling others how much pain he was in.....He stayed on treatment, but did not receive a must needed medication adjustment just before his last and fatal suicide attempt, He needed to speak up and tell someone about the voices telling him to kill himself and how much he was hurting. Suicide shatters the people who are left behind.
IF YOU ARE SUICIDAL< CALL THE SUICIDE HOT LINE AT
1 800 781 2433 or 1 800 273 8255
In Connecticut you can call 211 for a mobile unit to come to the home to come and assess the person (or you).
We will do our best to help with information and support. We are NOT a medical center, however. We are parents who have been through over 13 years of experience taking care of our son. I have epilepsy as well as a severe migraine and arthritis problem. I am a researcher, reader, and will do my best to help. I will tell try to link you up to someplace that can help.
We have educational programs for schools, civic groups, individuals, ambulance and first responders, police, any group that is interested.
Dogs watching over Sam's river and our town
Thursday, September 22, 2011
Thursday, September 15, 2011
Excelllent Video Check It Out!!
http://www.cbsnews.com/video/watch/?id=5419899n
This is a great video, with Katie Couric, Susan Axelrod, Dr. Jensen about Epilepsy
Sunday, September 11, 2011
Stigma Revisited (updated)
Stigma Revisited, October 9, 2008
The prim office worker smiled as she spoke, I am sure she did not even realize that her words cut through me like a knife. “You look perfectly normal, though!” She had been so nice when hearing of our struggles
with my son’s epilepsy. Her understanding seemed genuine as she was filling
out paperwork as my daughter had her own dental work done. I told her, as I
often do, the statistics of epilepsy and its impact nationally and
internationally. I went on with my 3-minute “elevator speech.” The scenario is
very typical for me to speak up when given a captive audience. She was very
interested, amazed, and compassionate. She admitted having no idea of the prevalence of epilepsy. When I got to the fact of 200,000 new to diagnosis, I shared that I was one of
those people new to the diagnosis in 2006. The smile on her face evaporated as the next statement slipped past those pleasant lips stunning me,” But you look so normal!” It took me back to all
the former conversations I have had regarding my son as well, “but he LOOKS so
normal” I wanted to have some cutting remark for her, I wanted to sound angry
because of all that we had faced. Instead, my reply was simply, “OF course, I
am as normal as you are! I just happen to have seizures a medical answer for what
I was mistreated and misdiagnosed with for over 12 years. Now I have proper
treatment and I am thankful for this!”
Now I also have STIGMA but then again, I have been fighting the stigma of epilepsy for over a dozen years so it is nothing new, it just is my own as well as my son’s.
Flashing back to one doctor visit for my son, our beloved doctor smiled and tried to convince us that a diagnosis of NES, non-epileptic seizures, would hold less stigma than that of epilepsy. My husband and I remained almost speechless and I believe breathless for a moment. The doctor, one I do highly respect, but one always wanted more data, more evidence, than testing was able to prove for our son. He was trying to tell us that withholding information from others
was within our control. I tried, in a halting fashion to tell him that there is
a stigma in NOT telling what is going on with individuals. When you have a child or
teen with a medical condition it is not an option to go 6 years telling no one
what he the condition is. There are permission slips that need to be signed or
he cannot participate in activities. My son has an ongoing chronic condition. He knows that the
same condition he once had a clear diagnosis for is continuing. Just because
the doctors removed the diagnosis, and new doctors did not want to “label
him” for a variety of reasons. The condition did not become easier to handle. Coping with NES and the mental illness connotations is difficult. We had treatment and response to the medications and this is what we needed. Depression increased by doctor’s lack of belief
was hardest to cope with for all us. Confusion grew because the need to continue to prove the symptoms of seizures through less than perfect testing caused frustration. Anger when inaccurate descriptions in charts caused continued failure in treatment. The trauma of STIGMA the need for an accurate diagnosis, rather than doctors believing treatment is sufficient, rather than understand need for quality of life. A diagnosis of epilepsy affects the entire family and the dynamics.
When my son was a young boy, newly diagnosed with epilepsy, I did not think about not telling anyone of his medical condition. His first neurologist was so adamant about restricting him. “He is not to climb trees, no bathing alone, no bike riding, no swimming” the neurologist told us. I was stunned! I was a gym teacher at the time, family fitness a key part of my
family’s daily life. “Bike riding, swimming together as part of my arthritis therapy” I told
this to the bespectacled friendly neurologist. He looked sternly at me and just
said, “Not anymore!” Since I am in charge of rules in my family, I strictly
adhered to this! I made S so miserable, and myself a nervous wreck! Looking
back, it made no sense since most of his seizures were nocturnal and not one of
these rules made him safer at night! That overly cautious doctor did not give guidance for nighttime safety.
First thing we did was to try to seek alternatives for fitness and fun. We began kayaking and walking more. None of us biked for a year, explaining to his older sister that it was only fair to S. I am sure you can picture her sweet face turning sour!
Of course, I would find him at school at the top of a swing set pole, "Mom, this is NOT a tree!" His humor may have been intact, but mom was frantic at times! I should have realized then that I could not wrap him in bubble wrap and keep the boy in him from all harm. I did lighten up, some, after a year. We did say he needed to have a more normal life!
The seizures were not going away. Sadly, the restrictions this doctor gave us did bring on STIGMA, his "friends", boys he had known at church since birth had been told be needed to be careful not to bump his head, to them this meant, TARGET. For the next five years, he was the target of bullying. No matter how we tried to educate them, their parents, coaches, teacher at Sunday school, bullying continued. School was never a problem, but the problem remained at the church. Nothing seemed to help. By the time Seb was 13, it had intensified to the point where they were punching him in the head and taunting him calling him "spaz boy,” seizure boy, taunting him to Spaz out. Even then, some in leadership did not see any reason to intervene with a HOPE Program. When S told what was going on to a Senate Health Legislative Aid, in front of our EF Affiliate she asked why I had not held one. I went back to this church and said either I have one or she will. Eventually, after pastors tried and I tried, speaking to the parents we did have a program and one family showed change. We had explained that they would probably not recognize his smaller seizures. Stigma
S when the epilepsy center took him off medications saying he would outgrow at age 11. This was one of his worst stigmas. S was sure he was going to die at this point! He was only 11. At the age of 9, on Depakote he told me that he was told me “I am sure I am going to die young. Is there a way for doctors to preserve his organs in case his sister needed a kidney or other organ?” His neurologist assured me it cannot be the medication causing this or depression, Mrs. M. Depakote is used, as a mood stabilizer. Doctors need to listen to parents and to patients.
Doctors, this is stigma when you fail to hear us! A medication that stabilizes one person
destabilizes another.
We left that church when our youth pastor moved on and went to a new job. Things were so different and he felt wonderfully accepted. Then he had a major seizure in this church .He recovered, after 5 minutes or so, got up to the seat sitting there through the rest of the service, terrified that his acceptance would be all over now, that STIGMA would return. He had never had such a long seizure at the last church and was sure all his friends would abandon him now. Instead, after the service, a few gathered around him to ask how to take care of him if it happened again. They casually joked with him, “S, you scared us, do NOT do this again.” But showed deep concern for him and remained his friends!
After the seizure at our new church, he continued doing all right with friends, for the most part, but after a medication change, the depression started crashing in, seizures worsened, two “friends” started to push away more, and more. These two had slowly been isolating S from the rest of the group. When S had tried to commit suicide, in part because of the medication the neurologist chose. One of these friends told him the “proper say to slit his wrists,” This young man has since apologized. The girl of the two has not. These two spread rumors that S had been faking his seizures. They may have had the info from another who had been with us at an appointment when the doctor had mentioned PNES and the fact we had not yet proven seizures enough. Stigma. (The appointment had been just after the first suicide attempt and the doctor’s sarcasm shocked this mom and dad!) We went trying to go over charts with abnormalities shown! 2 weeks later the second suicide attempt occurred. (he was 15)
Stigma had already hit a previous generation when my husband’s uncle severe epilepsy and was treated in a state hospital. He was severely burned during a grand mal seizure up against a radiator while no one was watching him. His mother came and found him in a horrible condition. Dillard also kleptomania, but his mother was told it was part of his epilepsy. “He is a
sick child.” Epilepsy and mental illness being almost synonyms little help for
him was given in the dark ages of “care.” (Epilepsy is NOT a mental illness!) Dillard died in his mother’s arms in a seizure that lasted 2.5 hours. His sister was only 14 when he died, Dillard
was just 19. My mother- in -law never wanted children until she was assured that Dillard’s epilepsy was not genetic but caused from delivery with forceps. I have no concern if it was genetic or not, I would not regret having my son! We have a grand niece who had seizures. Dillard’s mother had possible seizures after a stroke at age 80-death at age 92. His niece has an abnormal EEG. (My sister-in-law). My husband had some febrile seizures. My grand niece has febrile seizures. Yet my sister-in-law told her daughter that his daughter’s daughter, my grand niece had no family history. Hiding family medical history is stigma when you hide family history when it is medically necessary.
My mother-in law has said she would not have had children if she were told it was genetic. She said this over and over she was so traumatized by her brother’s epilepsy. My husband is her son, a child she is proud of and loves dearly. I have tried to express that there is never any
blame from us. We have never been told S’s seizures are genetic. Still she
says this repeatedly as if she has to, maybe for herself. When my children
wrote books at age 10 and 12 about their views of epilepsy to take to Washington, DC,
their Grandmother did not like them. It made it almost seem real, she said. I
could not speak to her about this, turning the phone over to my spouse and
taking the children for a walk. We had just gotten home from a grueling MRI
with our son at that moment when she had called. This is stigma when a beloved
Grandma did not want to face what we are going through as real. She has been
there for us and is now a great support. It was just how she said this as if
what we were going through as if it had not been real all those years.
We have faced lost jobs, lost friends, financial struggles, family strains, pulls, pushes and bullying and brutality. Words fail to express the pain fully. Would I back off from speaking out? Would I do anything
differently? NO, let me explain.
I do not feel that I have to change, I KNOW I have to change the world to accept epilepsy! It is time that we come out of the closet. Some doctors do not seem to understand. I have seen this. I have tried to tell one of ours that even though I fully respect his clinical knowledge of the
medications, the mechanism, he needs to understand our knowledge of seizures
from the inside! We know and understand their effects because we live this
life! S and I both do and have for well over a decade. Maybe it is time more
of from the epilepsy community can work as a team. I know that people separate from the epilepsy community may not us understand us if we do not speak about epilepsy. If we keep it all a secret, if we allow the mold to grow, of the pain to fester, it gets worse!
Tony Coelho twice has shaken S’s hand and told him “do not be afraid to speak out about your epilepsy” I have to remember this and DO it! I have lived it and plan to continue! I cannot go back and say to him, “But, our Epileptologist thinks we SHOULD be concerned!” What do you think, Should we be afraid or can we be united in speaking up. I want to break this stigma. It
has reigned too long. We need to take charge too long.
I will not be afraid because a doctor thinks I caused stigma because “I thought my son had epilepsy” I KNEW He had it because he was diagnosed!”
October 2009 update, Sam was re-diagnosed at the age of 17. We must change the thinking of the world that thinks people with epilepsy are one set thing. People with epilepsy are people. Many shapes, many talents. Many needs, abilities, we come in all shapes sizes and will amaze the world. There is a lot of education needed and we are the best experts. We know epilepsy from the inside. Come break the stigma with me please!
In 2010 I contacted this doctor one last time because his words continued to haunt me and I told him this. I asked him if he might clarify why he believed I had caused S’s stigma. His reply was,
“ I regret that words of the past are haunting you. We should both move forward since S is no longer my patient.
My past words should no longer be given any importance. Also, you should feel free to disregard them. You have disagreed with my statements and assessments in the past, and it is entirely appropriate for you to continue to do so. I think that it is fair to say that both you and I have expressed ourselves based on what we felt to be our convictions and the best of our knowledge.”
In other words, he gave no answer for how I caused my son to be punched in the head because he had a chronic illness. This doctor is one I had great respect for and told him multiple times during and after the course of our working relationship. Perhaps he is of the school that silence is better. How he believes a patient and family can live with this disorder in silence is something I cannot fathom. The world needs to learn, apparently so do some doctors.
He needs to take a walk in our shoes.
Thank you, GM
The doctor’s name, location, children’s names all withheld for everyone’s privacy. I do not want other patients to be upset by his words. I hope that the doctor has a great understanding of stigma overall than he demonstrated with us. He is an amazing doctor. We sometimes had great working relationship with him. I think that is why his words impact me still today and I wanted clarification. For him to say today, “just disregard them” feels like someone who is clueless still. I still want to give him a walking tour of our lives. This is not because of lack of respect, but because I do and wish he had the understanding to pass along to other doctors. If the doctors do not understand how to CHANGE stigma, I fear we may never do so.
city withheld
August 1, 2011
I finally had the chance to speak to this physician. He does not recall any of these conversations or the emails about S or stigma. He thought that it was about an appropriate diagnosis. He now says that he is in agreement about bringing the world into awareness of what epilepsy is and what it is not. I asked him what he would do if it were his child and for a period of 6 or 7 years the diagnosis was not clear yet he had to sign papers for his child to attend activities such as camp, gymnastics, etc. What would he do? It took a few repetitions before he understood and stopped saying, “well you could…” no what would you do because this is your child….he finally said that he would put down seizures if I believed that is what it was…I then talked to him about much of what is written here and he seemed to understand and agree that we do need to change how the world view epilepsy and not hide the information. I do not mean to portray anyone negatively. This is just a re-telling of what occurred. We all learn as we go through this phase of treatment and life. Hopefully without harm or much harm to others along the way.
Copyrightgm2009 all rights reserved.
Friday, September 9, 2011
OUR STORY
Sam suffered from epilepsy, depression, schizophrenia, and addiction. He was an artist, musician, and prankster. He reached out to help others even on his last day, but he was not always able to ask for help for himself. PTT was his the name of his own T-shirt company when he was 16, one year after his first 2 suicide attempts at 15. We are continuing the advocacy that Sam began.Advocacy was his passion. It is our desire to help others and prevent the suffering that Sam went through. There is HOPE and treatment for epilepsy and mental illness. PLEASE call for help and information! While we are not a treatment center, we will do our best to get you information, support, and assist you obtain to appropriate care. 24 hour suicide # 1 800-781 2433 or 1 800 273 8255 contact us at pttbysam@gmail.com
Reaching out to people effected by epilepsy or mental illness....
OUR MISSION: a of epilepsy and mental illness, bullying, and assist people in obtaining help to reduce suicide.
3. Veegpanions have been part of our work for seven years for patients entering epilepsy testing, surgery, or other medical challenges. We have added many versions over the years including a G-Tube doll with book, C-pap, AFO's, VNS, and several other adaptations for special individuals. We have sent roughly 260 to five countries. These have always been free to the individuals. Now these therapy creations (plush dolls, bears, cats, dogs, or monkeys, ) will be part of Preventing Teen Tragedy for our Epilepsy Division. They remain free to patients. These started as therapy for the challenge Our desire is to assist individuals and families effected by mental illness or epilepsy through
support, information, and advocacy. Our purpose includes advocacy education for
individuals, families, and the community about epilepsy and mental illness. Our goal is to
reduce the stigma associated with these disorders.
Vision: Forming cohesive teams between individuals, families, and professionals is one of the
long-term goals of PTT. The appropriate medical care and educational needs will be met
these working teams learn to communicate well. The care in Northeastern Connecticut needs
improvement. Awareness programs for both epilepsy and mental illness need to begin. We
envision barriers coming down for both individuals with epilepsy as well as mental illness.
3 DIVISIONS of PTT
1a. personal advocacy learning how to obtain the best medical care for yourself or a loved one. We have learned that developing a positive working relationship with a doctor is a valuable tool to successful treatment. We can assist in teaching while still guarding your privacy.
1b. Legislative advocacy. Joining with other foundation on initiatives that effect epilepsy or mental illness to form the strongest voice. We must stop the stigma of both brain disorders.
2. Suicide prevention. through information, education, and support throughout the community we hope to help reduce suicide. Proper treatment includes support programs for families and individuals. Sometimes this can include education for the community where the individuals live, work, go to school for their best quality of life. Together we can try to eradicate the stigms our family endured because of Sam's epilepsy and a desire to deliver therapy tools to others going through challenging times during testing. I will include the story of "How VeegPanions began" in this blog.
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