Sometimes, someone has to ‘stir the drink’. A caregiver often has to be an advocate in principle and legally. Wednesday, Patti’s doctor and unit charge nurse after reviewing her Neurologist’s missing outpatient recommendation letter of July ’04 that I hand carried back from Patti’s appointment and my multiple “talking point” notes on specific issues made the first significant and aggressive changes in symptom treatment in almost a year.
I had hoped to be invited. I suspected that somehow would be logistically impractical. I was glad that I had learned to leave “talking point” notes. Paperwork fuels bureaucracy. However they did call afterwards and update me on care plan.
Zanaflex for spasticity (manifested primarily in legs) will be doubled as recommended as first stage in possible increases. This has a dual objective in that spasticity is a factor in fading ability to transfer. Progress will be monitored and a dosage increase plan is scheduled if necessary.
Ditropan XL will be started for bladder control overnight. This is first aggressive bladder control in over a year and unique this time in that it is time specific (overnight) in focus. Getting ready for bed and waking up will be accompanied eventually by a toileting program, here again transfer ability is a factor and spasticity control becomes a related aspect.
SEASONALE will replace LoEstrin which was creatively misused to reduce menstrual bleed cycle to 4 X a year. SEASONALE is designed for that purpose. As a male caregiver it took a while for me to figure this one out. <grin> Fortunately a good family friend is a Nurse Practioner specializing in OBGYN and recommended controlling and reducing menstrual bleed cycle once Patti’s eye hand coordination and cognitive problems prevented her participation in her own care.
(Of course now a certain 16 year old is convinced that SEASONALE is the greatest advance in the history of medical science <grin>.)
Individually and interrelated these will attempt to revive Patti’s level of participation in assisting in her own care. Most common side effects at first could be increased drowsiness - only further enhancing Patti’s appreciation of her naps. <grin> That in itself is not a bad thing. Rest is helpful, quality of rest is even better.
MS has a way of grinding you into just being happy you’re not going backwards. While there are no guarantees, doing ‘something’ is important to try.