John’s last appointment at the ALS clinic was in Feb. His breathing is somewhere around 38%. He seems to test all over the charts with different blows, so it is hard to say for sure. It has become very difficult for John to speak. Some days are better than others, but he often has to use his computer to communicate. He is still using the bi-pap machine only at night for breathing, which is good. He has very little use of his arms and legs, but he does still go on the computer every day. He has a great set-up on his computer that allows him to go on internet, control the T.V. and lights, and even answer the phone. It’s hard to believe that it’s been three years already, but it has.
The above slideshow consists of some pictures taken at the Nickelback concert that John attended with Sabrina and some other friends and family members. Everyone had a good time. The other pictures are from a party at Steph and John’s house with Kip and Shannon, who have become good friends. The party was in “the loft” and it was tricky getting John and Kip up there, but was worth it. You can see the pictures bigger and in greater detail by clicking here.
As for John’s health, here’s an update from Stephanie:
“At his last appointment his breathing was down to 47%. The doctor put in orders for him to go on bi-pap during the night and occasionally during the day. He also wants John to start using the feeding tube because he feels that John is using too much time and energy to eat meals. A nurse will be coming out to show us how to use the feeding tube (again). He also visited the Courage Center and they have ordered him a computer that will talk for him. If the ALS loan pool has the forehead dot attachments, he will use the computer with the dot. If not, he will use a mouse for now. The nurses at Courage Center are hoping that John will be able to get eye gaze in the future for using the computer.”
As always, John continues to enjoy life and has a supreme sense of humor.
I just wanted to share this photo that Amy Vleck sent me that was taken on the recent hunting trip that from John, Bob and Dan had last weekend. Looks like it was a pretty successful expedition! And they had fun, too, I’m told.
Last Saturday, September 27, some of John’s family and friends participated in The Walk To Defeat ALS. It was a very nice day and was fun to spend time together while also calling attention to and raising money for an important cause. At the end, they made an announcement that they made $350,000 on our walk alone. They said that combined with the money made from other walks that were done at other locations in Minnesota this year, they more than met their goal for this year. The volunteers were amazing. It was just a really well done event.
I’ve put together a little slideshow with photos taken by myself, my husband and Nancy or Terry Nielsen. I hope you enjoy. (You can pause it by putting your cursor over the photo and a control panel will pop up for you to pause or go back if you want to look at another photo more closely.)
(I intended to update this more regularly and I will try to be better at doing that. You can subscribe to this feed so that you get a notification when the page is updated by clicking on the little link at the top that says “RSS Feed”. If you need any help with that, ask me and I will be happy to help.)
John is using a wheelchair more frequently now. He should have his custom made one within the month. Right now he is using a motorized one that they received on loan from the ALS association. It really can cruise and supposedly the custom one will be even better. Things are happening around the Vleck house to prepare for John’s growing needs. A sidewalk is being made from the driveway around the side of the house to the walk out family room/den on the lower level. The lower level will be remodeled to accommodate John’s wheelchair needs. Steph and John’s new bedroom will be on this level. A room has already been converted into a closet/dressing room. I will try to get some pictures of this from Steph and John to post on the Photos pages. It is a really awesome closet/dressing room. They will be converting the bathroom downstairs to make it accessible to John in his wheelchair, including a “roll in” shower. Things are happening rather quickly with regards to the remodel.
John had his most recent appointment at the ALS clinic on June 26th. His appointments, at this time, are every three months. At his appointment, they said his breathing capacity is at 77%. When it is at 50%, they will have Bipap, a breathing apparatus that helps people get more air into their lungs. John is still doing well with swallowing and maintaining weight, but they would like to put in a feeding tube (g-tube) by the end of the summer because they want to do it before he needs breathing help. At this time, physically, his greatest challenge and deterioration is with his hands. He has increasing difficulty in using them.
He is still working at Medtronic full time. The plan seems to be that he will possibly cut down to 32 hours a week with complete retirement coming sometime in October or November.
I added some photos to the photo pages of some of the things that they have done so far this summer. Mainly they are of a weekend trip they took to Grand Rios in Brooklyn Park in mid-May and the weekend of Memorial Day when they went camping. They were fun family times with Steph’s extended family. I encourage anyone who has other photos of John with friends and family to please email me with them. My email link is in the sidebar.
Some of the things coming up:
John’s 41st birthday, August 3rd
August 8th, 9th and 10th, John and Steph will be going on their yearly camping trip with friends and family at the Apple River where there is always good times and tubing. This year Kip and Shannon will be joining the group for the weekend.
August 18th, Stephanie and John will celebrate their 19th wedding anniversary.
August 29-September 1st John and Steph will be going to Nancy and Terry Nielsen’s cabin with family and friends for the Labor Day weekend.
Through all the challenges John faces, he manages to keep his sense of humor. If you were to ask anyone who spends anytime with him on a regular basis, what is the most amazing thing about John’s way of dealing with ALS, they would say his sense of humor. Just about everything is funny to John. John is hilarious. It is an inspiration to be around him and Steph.
