Welcome

Hi everyone!  Kevin and I thought it might be a good idea to create an online "space" for folks to stop by and get updates on what is happening in our household.  Nothing fancy here, just posting news so that we don't inadvertently leave anyone out of the loop.  Please continue to text or email if that is what you prefer.

For some background, Kevin first started experiencing weakness in his right hand in March of 2019.  Gradually weakness and other symptoms progressed until he was diagnosed with ALS in December 2019.  Over Christmas break we began to have conversations with the kids, essentially telling them that:

1. Dad has a motor neuron disease called ALS. This is why his his hands/arms are not working.
2. The doctors cannot make his arms better and eventually the disease will also other muscles in his body, including his ability to walk, but there is a lot we don't know about how or when that will happen.
3. Dad has retired from work.
4. We will be remodeling the first floor of our home to accommodate a first-floor accessible bathroom and bedroom.
5. Some people might be upset when they hear about or talk about Dad's disease, and that is ok. If you have any questions come to us and we will try to answer them.

We are keeping the tone positive; there is a lot that we don't know about the disease's progression and we don't find it helpful to speculate too much about the timeline at this point.  However, we are being very open about the effects of this disease on our life right now.  For example, this week we ordered a lift chair and Kevin has proclaimed it his "new favorite spot."  The kids are aware that Kevin does not feel comfortable enough with his reaction time to drive on the highway, and that he naps frequently.  These sorts of changes are becoming our "new normal" and are part of daily conversation.

We recently had a very encouraging appointment with a neurologist at the Cincinnati ALS Clinic. I've copied and pasted Kevin's email about it below. The medication that he mentions is already beginning to help him sleep a little better, and we have instructions on how to play with the dosage to maximize its effectiveness over the next few weeks.

From Kevin:
"I had my first visit with Dr. Neel at the UC Health ALS clinic as a second opinion and consultation regarding my ALS diagnosis in early December. I really like this guy. Here's a link to an interview with him and "Pinky" Dressman the Cincinnati area ALS Association care services coordinator. I've already talked to Pinky several times and she is awesome. She acts a dual role, being the ALS Association care coordinator, as well as a licensed social worker at the ALS Clinic on Dr. Neel's team. It was she that broke the logjam to my getting in to see Dr. Neel!

https://www.uchealth.com/articles/dr-robert-neel-explains-als-on-wvxu/

Our appointment was for 4pm, but we had to wait about 1.5 hours before he showed up! At first, I was pretty put off but kept an open mind. Shortly after he introduced himself, and apologized profusely for the wait, his medical assistant (as well as pretty much everyone else in the building) had to leave for the evening. Before going she assured us she would call first thing the next morning with followup instructions, appointment schedules, etc... that Dr. Neel would prescribe. Dr. Neel then took the next hour to do a full exam as though I was his first patient of the day. No hurry, very patient and thorough, extremely knowledgeable and easy to talk to. His primary goal was "to get to know us" (his words). He'd looked over my other Neuro's notes and diagnostics but repeated some exam items and performed some more that the other doc hadn't done. By the end, he had the best news we've had yet.

He spoke like a doc that's been treating and researching ALS exclusively for many years. He said I am "upper motor neuron dominant" (UMN) ALS. He indicated that I'm in very early stages and that my muscles are still quite strong, but that I have a high degree of spasticity. That means my muscles are tightening on me involuntarily which causes me to walk, speak, and move awkwardly as well as feeling generally weak. So first off, the UMN ALS generally has the best prognosis of any of the other forms (generally categorized by onset of symptoms). This means my first prognosis seems not just off, but way off according to Dr. Neel. Secondly, the spasticity can be treated with a simple medication that should free up my muscles and give me some movement back and help with my sleep. He talked about setting up appointments with occupational/physical therapists to help with exercise routines to help with my shoulder and keep range of motion and strength as long as possible. He talked about speech therapists and pulmonary specialists to get a jump on communication and breathing issues before they become a problem. He names all these folks by first name as they're all on his team! They've been doing this for quite some time! He also (because of my computer and technical background) wants me to consult with people about technology assistive devices and therapies that he says could help me continue to be productive using computers both now and as I progress through the loss of my hands. He really did make it feel like he is tailoring a treatment plan unique to my unique set of ALS symptoms and not just a this-is-what-all-ALS-patients-do.

By the end, neither I nor Jane had any more more questions. Nor did we remember the 1.5 hour wait. We know he was late because he was being just as awesome with his other new patients before us. He even asked us if our parking was validated before he went to go input the prescription for the meds to treat the spasticity. We left and felt like the last ones leaving the building (except for Dr. Neel) well after 6pm. We got home, ate a little dinner, and the prescription was waiting at the drug store. I really like this guy."