The positivity started on Tuesday, May 8th. I was honored to attend the Ohio House of Representatives vote on House Bill 184 to make March Multiple System Atrophy Awareness Month in Ohio. Representative Jarrod Martin and I presented this Bill and gave testimony in May of last year and this was the day the House was going to vote.
Ryan Rushing and I arrived early enough to speak with Representative Martin in his office then walk over to the House Floor. His assistant, Jennifer Tock was a gracious hostess and walked us up to our seats in the balcony overlooking the floor. I was anxious and excited at the same time. This would be a giant step toward making this a law in Ohio. I was concerned with the length of time that had passed since I had testified before the committee. As a matter of fact, with the rarity of MSA, I wasn’t sure they would even remember the Bill being brought before them, or my testimony of behalf of MSA patients.
The agenda was extensive this session. Finally, the next item was us. Just as I sat forward in my seat, waiting for the vote, I heard House Speaker William Batchelder say my name. Speaker Batchelder had noticed me sitting in the room and asked that I stand as he introduced me to the entire House of Representatives! All the Members of the House applauded! Not just for me, but for all those who have lived MSA. Once the applause subsided, I sat back in my seat and waited for the vote. Holding my breath, I watched the Voting Board light up. As you know, the House of Representatives is a body of elected officials from both the Republican and Democrat parties. The Board is divided by each party, with each representatives name listed. Each member of the House has a green and red button at their seat. Green is a “Yea” vote; red is a “Nay” vote. As they press the buttons, the vote board lights up. Green. Green. Green. I watched as the lights on the board continued to light up green. When it was all done, there were no red lights to be seen. The vote was unanimous! The Ohio House of Representatives had passed H.B. 184! The House of Representatives had just voted unanimously their support for MSA.
The next step in making a Bill before a Law is that the Bill will now go before the Ohio Senate and become known as a Senate Bill. It will be given a unique number before being assigned to a committee that handles bills on that topic. To become law in Ohio, a bill must receive three “considerations” in each house of the General Assembly. Introduction of a bill constitutes “first consideration.” It will then be assigned to a committee, just as it was in the House.
This step gives the senators an opportunity to hear from experts and concerned citizens who testify before a committee to express their opinions or make recommendations. They may change the bill with alterations called amendments or choose to take no action at all. If a committee recommends a bill be considered by the entire Senate, the bill is voted upon and reported by the committee. The referral of a bill to a committee constitutes “second consideration.” Once I found that this would be the next step, I immediately put in a call to my friend, Senator Chris Widener. I have known Senator Widener for several years and he has watched the degeneration that MSA has done to me. Chris honored me with a Proclamation from the Senate at my council retirement in December. I will ask him to keep an eye out for the Senate Bill and make sure it doesn’t get stalled or bogged down in committee since he is not on the Heath and Human Services Committee. As with everything in our lives, MSA patients learn that things take time, and if people are not familiar with it, it slows the process even more. There is a time limit for Bills to pass through the steps, or it has to start over. Senator Widener is not one who lets moss grow under his feet and with my persistence; I anticipate that I will be testifying before the committee before long.
Once it comes out of committee and is approved by the Senate, it will become and “Act”. The next step will then be it going before the Governor. I am confident we will make this happen since Governor Kasich has already issued a Proclamation proclaiming March as MSA month in preparation for this.
The next round of positivity was on Wednesday, when Susan, Angelina and I and Doug Brandt of the Dayton Barefoot Runners left for our trip to Kalamazoo, Michigan, specifically Western Michigan University. If you remember, on March 31st, the Dayton Barefoot Runners held a 5 Mile Run for MSA in Fairborn, Ohio.
We were aware of two programs relatively close to our area that were conducting research for MSA. We emailed both universities and asked them to tell us what they were doing in current research for MSA. Once we received both replies, six of us reviewed them and choose Western Michigan University to receive the proceeds from the Run. We had already established a fund, Hope for MSA, so we took the proceeds from the Run and the generous donations from readers like you, and made our journey to Kalamazoo.
MapQuest indicated it was about a 4½ hour drive from here to Kalamazoo. Isn’t that a fun word? Kalamazoo. Matter of fact, we had a couple of towns with fun names on our way. (Susan’s pronunciations are included). Once we got started on our trip and went through towns likePiqua, (Pic-a-wa) and Wapakoneta (Wah-pah-kah-net-a). MapQuest even thought on the way to Kalamazoo, that we should go through some very rural areas. And I mean very rural. Even for Ohio. Some of these towns were so rural; we decided that they had to have food flown in. There was even an area where there was no cell phone signal, and even the sun didn’t shine. No kidding. It was dark and gloomy on a very sunny day.
We arrived in Kalamazoo about 5:00 p.m. and we were all hungry. Doug had found a Mediterranean restaurant on Urban Spoon. One reviewer said “the furnishings are plain and a little shabby; the food is excellent. They’ll treat you like a cherished friend.” We decided to give it a try. We found Shawarma House to be exactly as described. Probably more Middle Eastern the Mediterranean, but the food was excellent. Doug and I tried the House Combo, Susan tried the Shawarmachicken, and Angelina stayed with the old stand by, cheeseburger.
For dessert, Doug enjoyed some baklava while we both tried a home recipe tea instead of coffee. The tea was marvelous! It had black tea, cinnamon, cardamom and sugar. To make it creamy, they add evaporated milk. We drank a cup, asked for a cup to go, and even talked the owner into giving us his recipe since we lived out of state. After dinner, we went back to the hotel, sat and finished our tea with some oatmeal raisin cookies from the front desk. We then said good-night to each other.
It was still early, so Susan and I decided to go visit the pool. I swam some laps, (ultimately too many), while Susan relaxed in the hot tub, keeping an eagle eye on me. When I decided to get out of the pool, I needed Susan’s assistance since all of a sudden my legs felt like rubber and would not move forward or hold me up. She helped me over to the hot tub, where we sat for a little while discussing the trip and what we expected from our visit with Dr. Charles Ide at Western Michigan University the next day.
The rest of the evening was challenging for me since I knew I had spent all my energy over the past two days. It was just a reminder to me that I was not pacing. We had to sit for a while at the tables provided in the pool area because I was then too dizzy to stand. Susan got towels and wetted them from the pool and put them on my neck and we elevated my legs. Once I had gotten a little more strength, we headed up to our room, with Susan stopping by the snack area to pick up a banana for me. Once we got in the room, we found Angelina asleep (bored beyond belief, I believe were her words). Susan stayed with me while I showered and off to bed we went.
Thursday morning we woke to a bright, sunny crisp day. Doug had gotten up early and ran (literally) over to the campus of WMU and met up with a group of runners that meet each Thursday. Then he ran some more with them. They then stopped for coffee and one of the runners was nice enough to drive him back to the hotel.
Once we were all dressed, we headed down to the lobby for a delicious breakfast. Angelina had a waffle, eggs and sausage, Susan had eggs and oatmeal, Doug had some yogurt and I stuck with oatmeal and fruit. We discussed the opportunity we were about to have at the university lab. Excitement was building!
Our hotel was close to Stadium Drive And we knew that was one of the main streets leading to the campus. We followed the directions we had, but, somehow, even with the four of us, we were not successful in locating the building. Finally, Doug gave Dr. Ide a call and gave us clearer directions. And a landmark to look for, a handicapped area of a parking lot that was blocked off due to construction. Presto! We were finally here!
None of us had met Dr. Ide, but there was a gentleman walking from the building in a hurried fashion. It was just like the verse about Santa in the Night Before Christmas, we knew it a minute it must be Saint Nick, or in this case, Dr. Charles Ide. Dr. Ide had tight curly hair, a little long, a graying beard, glasses and the expected corduroy jacket. He fit the picture of a scientist perfectly! He came right over to our vehicle and greeted us in a very friendly manner. He seemed to be almost as excited to meet us as we were to meet him.
He led us to his office and introduced us to his staff as they arrived. We all sat down around the conference table in his office. He started talking about his research and the abstracts he was preparing for the Society for Neuroscience which meets in New Orleans this fall. He started talking about brain cells that are damaged by misfolded protein and how other things with very long words start attacking the immune system and eating away the insulation that allows neurons to function correctly. I was totally lost, but Doug, being a biochemist, jumped over to the seat on the other side of Dr. Ide and started asking questions so he would understand the process.
This was going to be a win-win situation for all of us! Dr. Ide knew the details, Doug understood the chemical parts of the disease, and Susan and I knew the affects it has on the person. Dr. Ide explained that patients that have MSA are born with this particular gene, but it lies dormant unless there is a trigger. He mentioned that there has definitely been a link to pesticides and MSA. He also gave us the name of a drug that is given to breast cancer patients that has been known to trigger MSA.
Dr. Ide and his staff patiently listened as we discussed the symptoms I suffer from and confirmed each and everyone as a symptom he has found with MSA. Things he talked about caused bells to go off in the journey I have had. He mentioned that the cells start to fight against each other causing an autoimmune deficiency. I had heard that before. During all the testing, my doctors thought that my Thymus gland, the gland that creates your immune system was causing my body to attack itself, so they removed it. That’s when I became a member of the “zipper club”.
Dr. Ide spoke of the orthostatic hypotension, the sudden drop in blood pressure, which is the cause of my sudden unconsciousness. He understood when I said that I have a pain in my head, not a headache, but a pain that I can pinpoint with one finger and the numbness and warmth that then branches out across the side of my face. HE UNDERSTOOD WHAT I WAS SAYING!! I can never explain how good that felt. Someone that could say, with exact certainly that they knew what I was experiencing. And that it is not uncommon. I was not a freak.
Susan was sitting to my left, slightly behind me. I could hear her from time to time, take a gasp, then holding her breath. Susan does that. When she becomes upset, she holds her breath. When she cries, she can hold her breath for an amazing amount of time. She should have been a scuba driver. Then she started to speak. Tears were welling up in her eyes. Emotion was overcoming her. She started to speak, then paused to gain composure. She thanked each and everyone in the room for the part they were playing in trying to find a cure for MSA. She confessed that she had always pictured one researcher, sitting in a corner of a dark lab, that would, ever so often, sneak and do some MSA research in between trying to find a cure for something much more well known, like Swine Flu. It was so overwhelming for her, for me and Angelina to know that there is a whole team, a whole lab, in a huge university working on nothing else but to find a cure for this monster of a disease.
Dr. Ide also spoke of Bob and Susan Summers. He had met them a few years ago while in Nashville. He knew Susan had just lost her battle with MSA. He spoke of some combinations of medications that he believes can slow down, or at the very least, help with some of the symptoms of MSA to make the patient more comfortable. He had wanted for Susan Summers to try this medication, but her Neurologist would not approve it for her.
Oh my gosh! We couldn’t believe what we were hearing! He had a medicinal suggestion? We quickly spoke up and told him that we knew that our neurologist, Dr. Jinny Tavee of the Cleveland Clinic would approve. She has been the most supportive doctor we could have ever asked for. She has never said no to anything. She had even prescribed an IVIG, which has not been proven to help MSA patients, but helps with autoimmune deficiencies. She is of the mindset, if you don’t try it, it can’t help. Dr. Ide asked for her contact information and said he would contact her and discuss his theory.
Dr. Ide then asked if we were ready to tour his lab. We thought that would be a good time to make the check presentation to him. We had raised $3,350.00 and had a five foot wide presentation check for the occasion. Doug, Dr. Ide and I posed for photographs. The university’s PR people were there and were also snapping photos for an article that will appear in the university magazine.
His lab was made of two rooms. He showed us the equipment and explained each piece’s function. There was a lab technician busily working on staining tissues for the abstract they had to prepare that had a deadline of that day.
Knowing Dr. Ide and his staff were facing a crucial deadline, we said our good-byes. It was sad to leave. There was so much information I could gain from this man, yet I also knew it was time to go. But I did leave with a feeling that I could contact Dr. Ide at anytime with questions, and he would be gracious enough to answer them.
We walked us out to our vehicle, shook our hands, wished us the best, reminded us to get Dr. Tavee’s contact information to him, and we were on our way.
We drove for a few minutes, and I don’t remember which of us actually said it first, but someone said, “We made the right decision. This was the university we were supposed to come to.” Everyone agreed. We all walked away from Dr. Charles Ide, a little more knowledgeable about MSA, feeling a little more hopeful, a little less hopeless, and with a warm feeling, knowing that there was not only one man, but an entire team of researchers who have dedicated their life toward working to finding a cure for this disease that will surely take my life.
Thank you Dr. Charles Ide and staff. You will never know how much we appreciate what you are doing. Not only for me, but for the whole MSA community!