DC Trip

I had the extreme priveledge of attending the National Epilepsy Foundation's Walk for life and Public Policy Institute. We visited Utah's senators and two of our representatives. We also spoke in front of all the President's of the State Epilepsy Foundations. It was an amazing experience. We also got a little bit of site seeing in while we were there. So warning there is a lot of photos attached with this blog post.

The day of the walk was rainy and muddy. Margo ruined her shoes in the mud. But it was really fun. We walked with over 5000 others for epilepsy awareness. We started the walk just below the capital and went down and around the Washington Monument and back. The total walk was a little over 2.25 miles. I am not use to walking that far by the time we were done with the day we had walked over 5 miles. My legs hurt so bad.

After the walk we took a tour bus around to Arlington. I learned so very much. It is so inspiring. All of these amazing men and women who have given their lives for our freedom. We saw the women in the Military exhibit. I learned a lot about the WASP group from WWII. They were a women's pilot group there was a little over 1000 of them. Margo's mom happens to be one of them. They did this amazing triute to them. These women did amazing work. They weren't even recognized for VA benefits until 1977 or were made officers. They weren't even brought home when one of them died in duty. All the women pulled their money together to get the body home to be buried.

This tribute was really nice. If you ever get to Arlington I suggest you take a few minutes to visit this. Then we went to the Tomb of the Unknown Soldier. I was so amazed at the reverence and awe that was there.

We traveled to the White House visitors center and went back to the hotel. We were incredibly tired. Sunday we did our speach in front of the president's and exec's that were in. The speech went well. I was excited to have it over. Monday we spent the big part of the day in meetings. We learned a lot. Near the end of the day we skipped the talks about how to talk to legislatures (we figured we knew how to do that) and went site seeing. We went to the Jefferson Memorial, Roosevelt Memorial, Lincoln Memorial, Vetanam Memorial the WWII Memorial. Around where all the memorial are the Cherry Blossom Festival was going on. It was amazing. I took over 100 scenery photos mainly of the flowers. The photo of me has the Jefferson Memorial in the background.

Now that this blog post is getting even longer. Tuesday we had our meetings up at Capital Hill. Believe me it is a hill after all the walking we did. We met with three out of the five Senators and Reps offices. We dropped info off at one other. I was really impressed with Jason Chaffetz's office and staff for being the new guy on the block and not being on any health committee's they were really receptive. We met with Orrin Hatch personally. Well at least long enough for the photo op. His office staffer was amazing and commended us a lot on the bill we passed in Utah.

Wednesday was our travel home day. We had a breakfast meeting with people from the National Epilepsy Foundation. I was excited to be going home and my kids couldn't wait. Although they were spoiled by Grandma so I am suprised they wanted me home at all. Erik did a great job will I was gone. I am really proud of him. We ended up being delayed in the airport for a while and it took a lot longer than it was suppose to but while it was storming on the ground I took this photo above the clouds over DC. It was a beautiful site. I am really shocked that the photo turned out. Now I just have to get back into the routine and on the right time zone.

UEA booth

I had the great opportunity to attend UEA and have a booth with the Epilepsy Association. I had a wonderful time. Although it has been a week I am still feeling a little run down from all the work that went into the booth. I learned a lot and we are invited back for next year. I really think that next year I will do things a little bit different. I was so grateful that I attended. I had an opportunity to talk with some amazing people. We didn't give out as much information as I would have liked to. Although we booked many seizure information classes and I hope we will boost the attendence for crop and the conference from all our advertising. Even if it doesn't, if all of our work helped one person handle a seizure properly than it was all worth while! Plus we are ahead of the game for next year! Thank you to all of you who helped make it possible. I love YOU!!!

The Special Mother

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles.
"Give her a handicapped child."
The angel is curious.
"Why this one, God? She's so happy."
"Exactly," smiles God. "
Could I give a handicapped child a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel."I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off she'll handle it."
"I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."

I received a copy of this at the conference. Thank you Julie for this!

Chicago II

I will be posting a lot in the next couple weeks about Chicago. It was an amazing trip and so incredible. I learned so much and am really grateful for all the prayers, work, donations, love and everything else that helped us get there. I have more hope for Kimmie in the last week than I have had for years.

Some interesting things I learned...

Denial buys the fime needed for a person to find the internal strength and external supports needed in order to accept that loss has occurred.

Pain is the solution not the problem.

One doctor told us he doesn't like the term "brain damage" especially in children. He likes to think that after seizing for so long that the children's brains start to re-decorate. Kids can regenerate and do things that adults can't do. We just have to figure out where they placed everything. So Kimmie may put the forks in with the bathroom towels. All the info is there we just have to re-train or find where they put it.

This photo was taken by my friend Karen at the Nature Museum dinner the last night we were there.

Chicago

I can't belive how much this trip has changed me. It was worth everything we had to do to get here.

Kimmie is doing okay. She is really frustrating today. Lara came in town last night! Mainly to help me and she took Kimmie to the Shedd Aquarium this morning. She got there and was only there 2 minutes before she told Lara she was too tired and needed to go back. She complained enough that Lara took her back. It cost $75 round trip with tickets and cab fare for her to see two minutes and take a nap.

I have learned so very much. The doctor that we ended up seeing was Dr. Catherine Chiron. She was amazing! She has given me advice on how to improve her eating habits! She also complimented me on the amount of things we have tried to help get her seizure free. She is about 60-70% sure with changing one med that we have with one med that we bring in from Canada may change the balance of things and make her "SEIZURE FREE!" I can't believe those words came out of her mouth. For a doctor to tell us there is any posibility that she could be seizure free would be huge. Apparently she is the world's expert in seizure medication combinations. She is just an answer to my prayers.

There is so much more information although I am suppose to be in class already so I am going to cut this short.

Thank you everyone for helping make this possible.

Personal Talk

Yesterday I did a scary thing. I was asked to speak to a group of researchers at the University of Utah. I thought okay I can handle a talk about epilepsy. I have done them before. Although I have a few board members that take care of that for the most part but I can handle talking about epilepsy. The doctor/professor that asked me said he was interested in sharing personal stories of epilepsy to show the researchers that what they do makes a difference in the life of real people. I first thought, personal story I have a lot of those about seizures. I can handle telling a story or two. The doctor sent me the format of the class and how long he wanted me to talk 15 minutes. That is a talk not just a few stories. So I started on my journey to write a talk about me and my experiences as a wife and mother of individuals with epilepsy. Someone once told me I needed to write a book about epilepsy. After my experience in the last three weeks preparing for this I don't think I could do that. I put together some photos and put it in a PowerPoint presentation. I wrote everything down and shared my speech with Erik. I had a total of nine minutes. I thought I am going to be scared and talk too fast I will be done with this in 5 minutes tops. So I add things to my talk hopeful to make my talk about 10 minutes. I had trouble putting everything together in the first place because it was all personal. Seeing the bad days Kimmie has had and putting them on the big screen is scary and emotionally hard.

I walked into work yesterday I thought I was already to leave for my speech. I though I can handle this. I went into Mom's office and she said, "do you know you have a stain on your jacket?" I thought no I look cute! I tried fixing it although to no success. It was only about penny size so I thought I don't care no one will see it any ways. I figured that I must not have looked cute or the stain must have been worse that I thought, because Mom handed me her JcPenney's card and coupons and she told me to go buy something to wear. The condition was that I threw away the outfit I was in (it was a hand me down from her). So now I have a complex, I thought I had it all together and now I look retarded and need to buy new clothes because I don't have time to go home and change. Great this is starting out really well.

With my new shopping trip I arrived a few minutes late (as usual) I had agreed to met another gal from my board 45 minutes before we spoke. I was glad for the extra few minutes. We still ended up sitting for 20 or so minutes before the class started. It was only the perfect amount of extra time I needed to completely freak myself out. I learned that not only researchers, but staff and neurologists attend this class. So there went a class from 20 max to 45, plus people that are a lot smarter than I am. The doctor that asked me to help told me not to speak on anything like our bill or need for research or anything like that because these people know that they just need a personal story behind it. So I scratched through my extra stuff. I am grateful that Margo went first. I really appreciated the extra time to calm down. I thought as I stood up to talk well at least I have a new outfit and I look really cute.

I started and something fun happened. I ended up not really using my notes I just talked. I ended up talking for 20 minutes. Then students started asking me questions. I didn't know my life was interesting. I have a bunch of new volunteers and people that are really interested in what we are doing! I can't believe I have survived. I think I did okay. I started to get teary when I talked about Kimmie's six hour seizure. I saw three ladies in the room crying. I think that is a good sign that things went well. I have been asked back for other speaking things. I didn't plan on this being a thing although I think it was good for me to tell my story I think it also helped me emotionally deal with some of the things that have happened over the years.

Regardless I survived my first major public speaking event!

TerryMcInnisTalk

(Medical Director, Strategic Health Initiatives, GlaxoSmithKline)

She was wonderful I could have sat and listened to her for hours.

Chronic Conditions
the US health system is geared and aligned financially
-to focus on one problem at a time
-usually in a short office visit
-with no payment or system for coordination of care
-between my various doctors
-or education about my conditions
-for understanding all of medications, vitamins, supplements or perhaps my latest herbal remedies

How About Changing the Healthcare System
What if-the US health system is geared and aligned financially
-to focus on the person (patient centric) instead of just one problem at a time
-usually in a longer office visit by my primary care doctor
-with payments and systems for coordination of care
-between my various doctors
-to educate me about my conditions
-to educate me on all of my medications, vitamins, supplements and herbal remedies so I can make informed decisions to keep healthy

The Payment System for Primary Care must be fundamentally changed!
–Coordination of care activities, disease management, and enhanced access (such as e-mail correspondence with patients) must be reimbursed
- IT systems and practice infrastructure must change-advanced EMR’s, registries, interoperability of reports, e-prescribing, etc. must be in place to coordinate and deliver high quality care

Medication Therapy Management
In any given week, four out of five U.S. adults will use prescription medicines, over-the-counter drugs, or dietary supplements. Nearly one-third of adults will take five or more different medications.”

“Pharmaceuticals are the most common medical intervention, and their potential for both help and harm is enormous. Ensuring that the American people get the most benefit from advances in pharmacology is a critical component of improving the national health care system.”

Medication Therapy Management MUST be:

Patient-centered
•Consistent and systematic processes that:
–Assess all of the patient’s drug-related needs
–Identifies drug therapy problems
–Establishes therapeutic goals
–Designs a medication therapy care plan
–Conducts follow-up visits to evaluate progress
–Communicates information to the patient’s physician or provider

This was tried in Minnesota:
285 MTM patients and 252 comparison group –all BCBS Minnesota health members
An average 6.4 medical conditions and 7.9 drug therapies per MTM patient

Results
–Goals of therapy improved from baseline 76% to 90% after MTM
–2.2 drug therapy problems per patient identified and resolved –78% resolved without MD
–HEDIS Hypertension criteria achieved in 71% of MTM patients versus 59% comparison group
–HEDIS Cholesterol criteria achieved in 52% of MTM patients versus 30% comparison group
Total health care cost reduced by 31.5%post MTM from $11,965 to $8,197(drug costs slightly increased with 12% increase in Rx claims)

Robert Ingram Talk

(vice chairman-Pharmaceuticals of GlaxoSmithKline)

Individuals don’t come into their doctors offices as Republicans, Democrat, or Independents they come into their office as individuals.

Driving Healthcare costs: 45% of Americans have a chronic healthcare need. We live in a society that believes in fixing the problem once it is there and not curing or preventing the problems before they start. We need to change our way of looking at moving to a PREVENTION system then INTERVENTION. Not just putting a Band-Aid on the problem once it is there.

$1.6 trillion is spent each year on healthcare in the US today. 75% of that cost is treating chronic diseases. An estimated 50% of that is preventable.

Tommy Thompson Talk

My family said that I need to share all of this wonderful information with everyone. It will take me a while to write all of my notes down. The first of the totally amazing talks was Tommy Thompson (former Secretary of Health and Human Services, and former Governor of Wisconsin). He spoke about the Healthcare problems in America today he not only talked about what the problems are but what we can do about them. I was impressed that he didn't just get up there and tell us what was wrong he also gave solutions.

ECONOMIC PROBLEMS: (recessions) $2.4 trillion each year spent on healthcare 75% of that on chronic healthcare needs
HEALTHCARE WORKERS SHORTAGE: reimbursement for healthcare workers across all specialties and not specific specialties
MEDICARE: the current system will be broke in 2013
WELLNESS = PREVENTION we need to prevent major healthcare needs with annual check up that are paid for to prevent larger problems down the road
MANAGE MEDICATIONS: teach proper medication dosages to avoid duplications or serious side effects
INFORMATION TECHNOLOGY:
· Electronic Medical Records: You can put a ATM card in any machine in the world and get money we need to be able to put a medical id card in at any doctors or hospitals and get all of our history. This will prevent any mistakes from you past history not being filled in fully. This will also prevent unnecessary tests that you may already have the answer too. This would save us millions of dollars a year in unnecessary tests or easily preventable mistakes.
· E-prescribing: 50% of all prescription mistakes are made because of poor handwriting. Sending prescriptions electronically to the patients preferred pharmacy saves mistakes on both ends. This also saves time on the patients end from having to turn in the prescription and wait.
· Paperless Medicaid and Medicare forms: this would save $1.5 billion a year
· Physicals needed to get into Medicare: not preventing individuals from getting in but to establish a record of current treatments and be able to give care for preventable diseases for the individual in the future.
· Lifting restrictions for uninsurable patients to make insurable (will help them be able to get the needed preventative care they need)
FDA: more individuals needed to prove drugs that are currently in the system or possible Phase 4 in trials that put the medication to market in FDA trial phase to try it out for a period of time to ensure more patient safety
FOREIGN POLICY: many 3rd world countries are lacking in medical care. We need to require our interns to do a 4-6 weeks residency in those countries. They will get a better appreciation for the healthcare system here and be better doctors for their experiences.
PRESIDENTIAL POLITICS: get involved in all the campaigns. Ask healthcare questions. In 11 presidential debates this year only one healthcare question was asked start asking our leaders questions.

It isn’t the critic that counts it is the individual in the arena.