Our holiday energy hangover is subsiding. Our house is in full swing – Henry is playing travel basketball this year and LOVES it. Our weeks are filled with games and practices, the more the better as far as he’s concerned! He is also sleeping past 5am, related – I think so!! Liberty has us traveling to gymnastics meets near and far. While at a meet in Maryland, she competed on bars for the first time this season and got her kip (its the skill she’s been working so hard towards) – she did so well throughout the meet she qualified for states! Addison picked up a Lyrical dance class to add to her schedule and is enjoying the expressive dance style. I enjoy going to work for a break! Brad is working from home most days (technology is great) and we are grateful to have a space that works for him and the company of Howie!
The stomach bug made its rounds through our house. You know when you are grateful to have only ALS, after you have had the stomach bug. We didn’t know Brad could feel worse outside of ALS but when he recovered from the stomach bug his baseline didn’t feel so bad. This sounds crazy I know buts is perspective.
So January is new beginnings… We made the choice to try out a new neurologist. Only the best care we can access is acceptable, this is quality of life for my main squeeze. After some research, meetings and a clinic visit – we have changed our care to Jefferson Hospital. Dr. R is a compassionate man that puts himself in the patients and caregivers shoes. He spent over 2 hours with us on an initial meeting. His approach, commitment to the disease and sweet manner won us over! The diagnosis does not change, however he feels there is a lot of life to preserve and many therapies to manage Brad’s symptoms. As he did the physical exam, at one point he took brads socks off to check foot reflexes – we discussed symptoms and he shared how there team can offer therapies. When the exam was over, he put Brad’s socks back on – he is the only doctor to ever do this while continuing to guide us through his thoughts! The following week we experienced an ALS clinic and were really impressed. 4 teams of doctors spoke with us, examined Brad and made recommendations. We are applying for a grant for a home health aid to come to the house. Additionally Brads shortness of breath has been addressed with a trilogy (fancy cpap) machine. We were trained in set up, care and how to wear it. The first night, Brad could sleep on his back without shortness of breath and these crazy continuous yawns – think of like a sneezing streak only in yawns and his entire body cramping. This is a wonderful improvement and will take time to get used too.
We are in the process of assessing our house and if we can continue to live on two floors. With a generous gift, we have an account for “home modifications”. At the end of December a member of the ALS chapter came out and did a review of our home, providing recommendations that may be helpful. Our Bathroom is our next change, we just need to make the best decision if we should be doing this upstairs or downstairs and all that goes along with it! There are so many options we are researching, we only want to make one change and not repeatedly. It will take time but we are sure to arrive to a best plan soon.
Today marks one year this diagnosis was delivered to Brad. Alone. Who came home to share with me. Once we found the strength we shared with our families. Its been a year of complete fear, change, loss of control and blessings. Oddly we stand stronger today as we navigate this journey together. We have learned we don’t need much, this crisis makes us realize what to value and how to put our best energy and effort towards that alone. Everyday I turn it over to God to please guide each of us to/through the next step…