Preventing Teen Tragedy: Reaching out to people effected by epilepsy or men...

March is birthday month is the Miller home. March 10th is Anna's day! She is 24 this year! We always tended to celebrate Anna and Sam's days together. As March nears it is hard not to feel the bittersweetness of joy at Anna's birthday and missing Sam. We are rejoicing in all that Anna is accomplishing! She has been our joy and we have not always been as good at letting her know this in the midst of the chaos of our life!

Anna deployed to Afghanistan in early February. She is a combat medic. This also made it harder to rejoice. Being so far away from her is beyond challenging! Knowing that she and Steven are far away from one another so early in marriage is hard for them! Dave and I spent much of our early years with Navy deployments so they have our empathy! We are proud of both of them!

Sam's birthday is March 23. We celebrated by holding a concert in conjunction with the Candlelight Concerts for Epilepsy Awareness. We have a lovely crowd of 49 people at Victoria Station Cafe. Caleb Cooper and friend Luke played, Papa Joe DeMaio, and Kala Farnham played wondrously! We had time to share a bit about epilepsy during the breaks. Abby Maerkle also sang!

We are planning two more concerts in coming months. One for the summer and another for November.

We have a special presentation with Dr. Steven Schachter date to be determined about Art and Epilepsy! This is an amazing presentation!

PTT will participate in Particle Accelorator once more on June 8!!

Birthdays celebrate another year that has passed and preparation for the future. Our future includes needs for funding to continue working with clients who are desperate for help! An aggressive campaign will also begin for research funding apart from those needs for $50,000. This research will be in suicide in epilepsy.

Thank you for your continued interest in our organization!
Ginny M

One Year

It has been a year since Sam walked into the river and out of our lives. I still think about him every day. I talk about him to others very often. Other people often avoid talking about him to me and even go as far as avoiding me. I have had family members who no longer talk, call, or write to me since his death. Friends came in droves to his funeral but have evaporated since. This is not how I wanted things to be. I want his life to have made a difference. His death was tragic. All suicides are and should not be ignored. People who are uncomfortable in hearing about a person who died via suicide need to understand that the family member may need to talk. The simple platitudes and smiles while people walk away hurt. Some people have just said, "We are praying for you" yet never think to call, or take other actions. That is ok, they were not active in our lives before. I guess I just wanted to feel less alone in my grief. God has placed new people in my life.

The reason to talk is to learn from his experiences. Suicide shatters those left behind. There are better treatment alternatives. Learning to talk about what is going on and seeking help is possible. You may believe that there are no alternatives. The truth is that tomorrow is a new day and there is help for you. IF you do not believe the doctors are helping, speak up for yourself. Tell someone. Do not keep the pain inside. You are a valuable person and other people will miss you.

Sam's art told a story that still resonates. I am trying to use his art to keep his story going.

Compare and Contrast

The resent snow storms have had me thinking of the differences between my two lovely, amazing children. Anna and I spent part of the morning watching TV together. She then went off to dance  and frolic in the snow with a friend.Anna has spent her life dancing from the time she was about 2 she has danced! She was born with a smile and full of glee! She is bubbly and makes people light up! Sam approached storms as a time for photography and snowball fights! Snow was time for adventure down hills for sledding (even when he was 20). He would not tolerate snow long, though. He would make sure he would bombard people with snow, ice, or whatever element was handy and say, "it was funny, right? You have to say it was funny!!" Anytime he pelted someone in the face or pushed snow down their jacket! No, Sam, it was NOT funny. It was never funny to HIM and he got upset if it was turned around to him! Sam was not born to dance and came out with a scowl in deep thought, it seemed! All pictures of him look like he is trying to solve the mysteries of the world as an infant! Anna's baby pictures are smiling and gleeful! Sam did not turn to dance until the age of 19 when he "discovered" contra dance and LOVED It.Contra is good clean fun and something that I did as a teen and also played in contra bands for years. We went monthly, Sam and I taking his friends. I now go wearing his picture to "dance with Sam" in his memory.  Sam dances still I am sure and with more rhythm where he is now!! His illness is not getting in his way! 


Anna had a great day in the snow with her friend! Her strong spirit has carried her through so many "Storms" much worse than the recent snow! She has always had such a strong spirit! I am so very proud of her independence and determination! She is a CNA and RP. This means she is a Certified Nursing Assistant and a Responsible Person (her job title at work!) I am so proud of the manner in which she has taken care of herself,worked since she was 17, and done so much! Anna worked for Intel for two years with her Dad and worked very hard there. She worked before that, I think she has always worked and we depended on her for so much, too much!Anna went out away from home to find who she was and this was good.  


Sam absorbed so much constant time and energy from Dave and I. He tried and wanted to be independent. He hated that he could not work more. He held a summer job at INTEL but was not hired on past that. He was told he would work again the next year, was called back to work, then told it was a mistake. He did some carpentry and painting one summer. He helped around High Pointe Church cleaning two different years, once with Ray Leo and gain for Paul Morelli. He was on Drama Team, band, and lead Kids of the Kingdom for 2-3 years. Not working eroded his self-esteem. Sam wanted to follow Anna where ever she went! 


Compare and contrast. Two kids, same parents, very different in some ways, The same in others. Please think about supporting some of the events coming up! I know I talk about support. No one can do it all, Even some can help. Thanks! GM 

December 29, 2011

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/

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.