On Wednesday, June 7, was my third trip to Chicago in the last few weeks. My cousin Terry and residential staff Pearla completed the threesome. Dr. Lubenow’s office denied our request for a telehealth appointment.
A round trip to Chicago and back tires out able-bodied people. Being in a wheelchair with high tone and spasticity gives an unpleasant meaning to road trips. Michigan roads are notoriously in poor condition. Chicago roads are even worse.
We met with Dr. Lubenow and his PA. We reported it was difficult to assess the effectiveness of the catheter trial a couple of weeks ago (see my previous post for details) because of the toll the round-trip took on my body. We decided to test the Prialt through the intrathecal pump.
This will be the process. Sometime in the next week or two, a nurse will come to Hope Network and fill the pump with baclofen and Prialt. Dr. Lubenow said these medications mix well with each other. I will start with a low-dose of Prialt and be assessed by my physical therapist twice per week for up to four weeks.
They will increase the dosage of the Prialt (a non-addicting pain reliever) incrementally until I have a positive response. If I have no response, then the doctor would prescribe a different pain reliever to try through the pump. I can communicate progress or lack of progress through Dr. Vandenberg at Mary Free Bed. This means I don’t have to run back-and-forth to Chicago! I will have to schedule a follow up dr. Lubenow in three months.
All of this could have been discussed virtually, but at least we have a plan in motion.
We stopped in Saint Joseph on the return trip where Terry generously treated us for lunch. The overall trip was not as hard on me as the previous one. I tried a few maneuvers with the wheelchair such as raising the armrest to allow my arm to dangle down the side. I also kept my legs raised straight ahead of me through most of the drive. All of this seemed to help keep the pain and tightness more manageable.
It’s surreal this is finally happening. I could really use a breakthrough here. There have been many disappointments the past four years. The tone and spasticity is painful and holding back my recovery. I’m excited but also tempering expectations. Keep your fingers crossed for me and I will continue to update everybody.
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