Well, we travelled to Dallas, Texas this past week and it wasn't a pleasure trip by no means. We arrived in Dallas last Sunday and the flight was uneventful. Once we arrived at the hospital where we were to meet the doctor the following day to see if my wife would qualify for the C2N clinical trial for PSP, she began aspirating on her thickened liquids and a few bites of food. They had put us up in a hotel-type room on the top floor of the hospital. I went to their lobby shop and got a few items for myself, and unfortunately I gave in and let my wife have a couple bites of the chicken that was on my salad and a small bite of a cookie. Normally I try to never eat in front of her, but in a 1-room hotel, my only other option was to eat in the bathroom, or the loo as some of you call it. Well, she began grunting and gasping for breath for about 2 hours, so I finally decided to take her down to the lower level of the hospital where their Emergency Room was located. I failed to bring our portable suction machine with us on the trip, as it's rather bulky. So after explaining the situation, they put us in a triage room and I began using their suction machine built into the wall. The ER doctor finally came in and pretended to know what PSP was. He kind a scolded me for letting her have some food (just what I wanted to hear). He ordered a chest x-ray and they hooked her up on oxygen. They also taped an oximeter to her finger, which my wife despises. After about an hour, she managed to get it off her finger. They later attached it to her earlobe. That lasted about 30 minutes. Her O2 wasn't really that bad, usually hovering between 94 and 97. The chest x-ray was taken and didn't reveal anything in her lungs. It was now past midnight and I was ready for us to go back to the room, knowing she would eventually settle down (been there, done that). The young ER doctor wanted to have her admitted for observation, but I refused. I had told him of our important meeting the next morning in regards to the clinical trial. He said we could leave, but it would be against his medical advice. So back to the room we headed!
The next morning, my wife was still really out of it, but was no longer aspirating. We met with the doctor and I could tell from her expressions that she felt my wife was too far gone with this disease. They gave her the mini-mental test, and unfortunately she only scored a 13. They wanted at least 17. And her score on the PSPRS (PSP Rating Scale) was over 60. They wanted it to be under 50. They also wanted her to take 5 steps with a regular walker or cane. We didn't even bother with that one. She was using a weighted walker (U-Step) after the second year of this diagnosis and hasn't been able to use even that for the past couple of years. She moves just fine by us locking arms around each other's waist. So we ended up flying back home that night and she didn't have to endure the rest of the testing (a MRI brain scan and a Lumbar Puncture to remove some spinal fluid for testing). The doctor said she would email the drug maker to see if she could get a "compassionate use" dose, but the doctor was pretty doubtful they would agree to provide it.
I really wish I had better news to report. I was so excited this past month, thinking this could be the cure for her and for the many people around the world that are struggling with PSP. I really feel like someone punched me in the gut. My wife has been going down hill fast these past few weeks. I find myself crying (outside of her view) most of the day. I consider myself a pretty strong guy (6'2" and 210 pounds), but this one is whipping the crud out of me. Like the 1970's song goes, Love Hurts.
Keeping the faith and waiting for God to open the next door .... Ketchupman