Hello all, It has been some time since you heard from us but things have been busy. In the late summer we spent a couple of days at one of Craigs favorite venues- the MN state fair. This is something we have done as a family every year and the kids were very happy to get Craig out there. We went up to the family cabin a couple of times and even got in a quick boat ride. Then it was time for Rachel and Joe to head back to UND. Next Craig, his brother John, sister-in-law Marcelle and I took Kim up to UW Madison. We got her all set up and settled. We hired a full time care attendant for Craig so I could return to work. Her name is Patty and she is a gift from above. She is so good with Craig and provides him with such excellent care I feel comfortable and I can focus at work. Patty has taken Craig to his appts, to the movies and even on a boat ride on the St. Croix. They have a daily exercise routine; go for daily walks and she helps with cleaning and things at home. My house has never looked better. She is finding ways to make Craigs days have meaning. We are so blessed that our neighbor Suzy connected us with Patty. Craig and I also went back to Madison for parent’s weekend to visit with our sweet Kim. We spent a few glorious hours on the terrace eating ice cream and visiting. Last weekend Marcelle and I went up to UND to visit Rachel, Joe and our niece Maggie while Craigs brother stayed with him. Rachel ran her 4th half marathon and you can see by the picture she had good motivation. Craigs buddies have been out to watch Vikings games or The Price is Right with him. He seems to enjoy listening to them banter with each other. His cop buddies have been over helping with the yard and other things. Family and friends have helped us make some modifications in the home that were needed. Earlier this week Craigs friend Don Chinourd from the St. Paul Police Dept took him out to a blind where Don was bow hunting. Craig seemed to enjoy it and Don has plans to take him out again. All of you know that anything hunting related is so important to Craig. His hunting partners John Gallagher and John Froehle did the annual trip to Canada without Craig this year. It was the first time in 30 years Craig wasnt able to go. I could see it in their eyes that is was very difficult to go without him, but Craig wanted them to go. They stopped in Grand Forks to see Rachel and Joe on the way home- something Craig always did when he went. It was very sweet that they continued this tradition. Also this week Chief Tom Smith and Assistant Chief Bill Martinez from SPPD came out to see Craig. Craig and Chief Smith started in St. Paul together and Craig appreciated their visit. Craig had his 4th EMG in August and although it wasnt conclusive the doctor said it is as close as you can get and he made the diagnosis of ALS-FTD. Or Amyotrophic lateral sclerosis (Lou Gehrig’s disease) and frontal temporal dementia. One is a degenerative spinal disease and the other a degenerative neurologic disease. The ALS is what is impacting his speech and swallowing. It is also starting to affect his limbs and he has much difficulty with his left arm and leg. His walking is severely impacted and slow and we use a wheelchair for any long distances. He needs help with much of his daily cares. His neurological issues are evident but the good thing is he is still in there and understands us. His memory has been spared thus far. Anyone that has spent any time realizes even though he cant communicate he is in there listening and participating the best he can. We had so hoped that our trip to Florida could find us an answer. It did, in a way, with finding out about his herniation of the disc in his neck. The chiropractors have alleviated that pain. However, while the neurosurgeon and his neurologist are certain that the herniation is causing him issues his EMG is showing changes and many of his symptoms cannot be attributed to the disc issue. Putting Craig under anesthesia would be a great risk to his cognitive level and we just dont want to risk that. We have tried everything we can and we were lucky to have been able to explore options such as the treatment in Florida, thanks to all of your support. We have no regrets, we searched everywhere for help and treatment. We of course are devastated that his condition does not have a cure. The help and support from family, friends and SPPD has been unbelievable. Someone is checking in on us all the time. Things are changing each week but we are taking things one day at a time. This is very difficult for all of us. The kids are hurting but they are also so strong. They love their Dad so much and they know he loves them. We have been lucky in many ways having the life we have lived. We are slowly learning to adjust to this new life. We are all very thankful for every moment we have together. We ask for continued prayers for strength and comfort. We ask that you all enjoy your families and friends each and every day.
Posted on: Sun, 05 Oct 2014 03:24:13 +0000
Trending Topics
Recently Viewed Topics
© 2015