Hi Everyone,
This has been quite a week and it’s not close to being over!
Yesterday I attended a Legislation Day Rally at our State Capital in Harrisburg. The Pennsylvania Brain Injury Coalition invited me to join two other families to speak to the upcoming budget cuts for waivers and Medicaid and how it will affect our loved ones.
There was a large public turnout. I was very nervous. The rally was held in the rotunda of the capital in front of the main staircase at the main entrance for the House and the Senate. There were reporters, cameramen/woman as well as the state employees, visitors and rally attendees milling about. It was business as usual as we and 8 Senators spoke above the noise. As I was straining to hear the speakers, I was wondering if any one was truly listening. Were we making a difference? At the end of the rally we were approached by some of the attendee’s. One woman in particular gave me new perspective I was not prepared for. She thanked me for the points highlighted in my speech but pleaded that I not give up our fight. She shared her son’s story with me. It does not have a happy ending; in fact after 6 years he is now in a state facility, she has lost her job as a result of having to be his caregiver as well as recently losing her home due to the debt incurred since the accident. She asked me to keep fighting for her and families like hers that can not fight or aren’t brave enough to stand at a podium. I was speechless. Offering her a hug I agreed to continue to try to do my best. I left the rotunda and headed to the Senate and House to knock on doors and introduce myself to new contacts…and so it begins.
Tomorrow I return to Harrisburg to speak for the Coalition to the Department of Health and the Department of Public Welfare. In addition to DOH and DPW, the Brain Injury Association, the Acquired Brain Injury Network of PA, the Disability Rights Network, the PA Association of Rehabilitation Facilities and the members of the House and Senate Caucus will be in attendance. I will briefly share the beginning of Corey’s journey but focus on the families struggle to live past the accident.
This week has been filled with many struggles. In addition to daily calls from/to Insurance and Medicaid to resolve denials and appeals, handling calls from medical bill collectors as well as balancing Corey’s current cognitive challenges, behavioral outbursts and therapies; we also have a few big appointments.
Today was an appointment with the seizure specialist at Thomas Jefferson in Philadelphia. Although we have seen Corey improve physically, cognitively I feel as if she’s rapidly declining. Her behavior is very similar to dementia and Alzheimer’s. We know that Corey is actively having silent seizures. Her medication can only manage them, not stop them. Our seizure specialist wanted the specific details to her change in behavior. The list included fatigue, headaches, short/long term memory issues, her inability to recognize me, rage, anxiety and disorientation…to name a few!
The Doctor asked if any of Corey’s seizure medications were recently switched to generic brands since our last visit. Just last month, the manufacturer for Tegretol issued an open ended back order; we were forced to accept generic. Generic Pharmaceutical companies create a mixture of substances “close” to the Brand but can use products from other countries (such as India and China) that do not have the same standards of quality as US companies.
Dr. S. gave me the names of 3 generic pharmaceutical companies that would be the ONLY acceptable companies to order the generic version for Corey’s seizure medication. It is his suspicion that Corey is having an adverse affect to the generic version of Tegretol because of the chemical makeup of the generic drug that may be supplied from one of the aforementioned countries. He is comfortable with maintaining a generic version but only if it is supplied from one of the 3 noted pharmaceutical companies. (Teva, Forrest, Mylan…Teva is the only company of the 3 producing the drug she needs) Dr. S was so calm and confident that Corey would be “just fine”, I felt as if a weight was lifted off my body! Let’s hope his “hunch” is correct!
Tomorrow is another busy day. My speech is at 10am then I will head back in time to take Corey to see Dr. Long at 2:30pm in Malvern. Please keep us in your prayers. Send your guardian angels to whisper in Dr. Long’s ear…tomorrow Corey must have a physical therapy evaluation. We are up against the threat of losing PT/OT/ST from Insurance. I have no idea what alternatives we have but we obviously can not lose therapies yet.
Good night all; time to write another speech…xoxo