1/21/16

For those of you who may have checked this blog site and wondered where we are and what we have been doing here's an update.  I (Karen) flew home in December to spend the holidays with my family and to see how Dad was doing as he had recently had a number of health issues.  He was doing better the first week I was there but that didn't last.  We ended up taking Dad to Upstate University Hospital in Syracuse (about 1 1/2 hr. away) to find out what was wrong the morning he woke up and couldn't walk.  We suspected lyme disease (as he's had it many times) and thought we'd find better resources in a bigger city with a teaching hospital.  The ER experience was....memorable.  Wonderful people and staff but there was no room.  Dad had a bed in the hallway along with many others waiting to be seen by doctors.  We had seen our fair share of ER "excitement" during our 10 hour stay there including a man who staggered in through the ER doors holding his side proclaiming "I've been shot!"  He obviously received immediate treatment.
The neurological floor is where Dad stayed and went through 100 tests - including CT scans, MRIs, and a spinal tap.  He was finally diagnosed with inclusion body myositis, a rare muscle disease,  by Dr. Young, a neurologist who specializes in muscles.  In order to confirm that diagnosis he'd have to have a muscle biopsy.  There's no treatment for inclusion body myositis so he decided why bother with the painful biopsy.  He'd had enough testing at that point and we made arrangements to find a rehab center in Ithaca to continue the physical therapy he was receiving at Syracuse.  He was working on balance and walking with a walker.  Through the whole ordeal Dad was an exceptional patient, albeit a bit humorous/sarcastic at times.  Who would come back from each test and say, "Well, that was fun." He had more needles poked into his arm in those 10 days than he's had all year.
During those 10 days Mom and I stayed at the hospital from 7 am to 8 pm each day, preparing our meals mostly from the cooler in the back of the car.  Each evening we drove 20 minutes to our friends, Brian and Deb's, to stay in their guest room.  I don't know what we would have done without them.  What a wonderful feeling to arrive at their house each evening, sit back and relax, have a warm meal or muffins or freshly baked cookies with a glass of wine, visit, and especially get some sleep!
A rehab room was found in Ithaca at Cayuga Ridge nursing home where Dad stayed for a week.  Two wonderful therapists worked with him on walking, maintaining balance, and exercising a couple of times each day.  It took a little finagling but we got him released on Martin Luther King Jr. Day which is also Mom's birthday.  We pulled out of the place with Dad proclaiming "Free at last!  Free at last!  Thank God Almighty, free at last!"  Fitting.  A celebration for many reasons that evening.
Back at home I had put up a handrail down the hallway, installed a raised toilet seat with grab rails, changed the hard-to-pull bathroom faucet, lowered the bed, added another grab rail in the shower and some other accommodations.  Mom and I found a loveseat recliner and got rid of the old couch to make their small home more walker-friendly.  My brother installed a garage door opener so no more manually lifting the door.  Dad is getting around rather well with the walker (even used just his walking stick our neighbor Bruce made for him years ago), doing exercises to try to maintain or build muscle strength, and working to put some weight back on.
And Jerry!  He's been in Stuart, FL on Persephone awaiting my return.  Luckily, there are a number of friends on the water and on land that have kept him busy and entertained best they could.  Thanks Dale and Roni, Tani and Jamel, Aunt Susan and Ken, and of course Donna and Jerry who spent Christmas anchored next to Persephone.  Jerry had to defrost the refrigerator recently to throw out the food that he didn't eat because he had so many dinners at friends' places!  Our friends Bob and Susan Church from Fulton, NY arrived to go for a day sailwith Jerry there in Stuart.  Bob brought along his whole family - sisters, brother-in-laws, kids - 14 in all.  A grand time was had by all.
If all goes well, and Dad's progress continues, I will fly to FL on Feb. 2nd.  Not sure what our plans will be upon my return.  I'll try to keep you posted.