November is always super hectic, filled with lots of birthday celebrations and Thanksgiving. Things start to amp up this time of year for us normally. This disease is so hard to plan for, we just don’t know what is to come and it can be very frustrating. One consistent symptom is fatigue. We all have an energy bank and when its empty, there is simply no more to give. ALS zaps your physical energy and it is hard to refill the tank but your mind is always energized. Don’t worry our house is totally calm, the kids (and Howie) never need a thing and we seem to be able to find this balance with NO challenge, totally effortless – JUST KIDDING!!!!!!
Our PENN Clinic visit was pretty routine, we were able to get a medicine for Brad that helps with cramping and twitching. Never mind, arm, neck and body cramps – has your tongue ever cramped? With the blood clot this summer, the original cramping medicine had to be stopped so we are happy to have this now. We always leave feeling like we have to figure out our next steps. Following the appointment we were able to meet up with Brad’s friend Chris for lunch. It was so nice to have this time with him, Brad always laughs a lot with Chris – its hard not too he’s very entertaining and we were able to tour his new condo in center city, absolutely breathtaking views and a terrific diversion!
We are continuing in-home infusions (cycle 2) and upped our seating game with a few Lazy Boys, super comfortable and always occupied. There is a lot of technology we are learning about to help prolong independence. Will this disease progress to Brad’s legs? Will it plateau? Will he lose his ability to talk? What is next? A friend shared some resources that included technology info that is helpful (included in the previous post helpful resources) – so we have a new fancy bed that can be controlled by eye gaze if we need that in the future. Its amazing to learn what is available and Brad loves technology so this is a WIN. The installation of hardwood floors in the remainder of our first floor is complete too – great if we need a wheelchair in the future.
With birthday season came a visit from Amy’s college roommates – who our kids now refer to as the unit “The Roommates”. It was a great source of support and the timing was perfect, when Amy gets overwhelmed it is hard to make a decision – they knocked everything off of the to do list AND managed a night out with a classy dinner and some spectacular dancing into the wee hours of the morning! We hope they can return again.
Life continues as we are on this journey, our kids are going through kid things – we had some rough spots in November – a reminder that normal life goes on. It fires us up as parents, it takes energy, these are our kids and they have so very much to handle.
Thanksgiving was a wonderful celebration filled with a week of family and friend gatherings plus Brad’s birthday. Brad’s 2nd infusion cycle was complete and the picc line removed the day before Thanksgiving – Amy says praise God! We loved having out of town and in town family with us. Our friends are constantly circling us and we are so grateful to have had so much time together during this week, this is what Thanksgiving is about for our family.
Following Thanksgiving, Amy came down with shingles – this is no good. Brad was scheduled to have a Port/Central Line installed, thankfully his sister Whitney could take him to PENN for this procedure. Despite not being able to go under anesthesia (he has shortness of breath when he lays down on his back) they did a local but Brad felt like the Doctor was doing handstands on his chest to insert the port. After recovering, the port is much more comfortable and only accessed during treatment. The line does not need to be flushed daily, which takes one item off of our daily list. Brad’s skin continues to be hyper sensitive and itchy. Can you imagine not be able to scratch your itch? Or always scratching someone else’s!