First I would like to rave about Dr. Dayalu again in this new blog -
We honestly could not ask for a better Neurologist to follow Brad's care. We are very fortunate to have him. He has a special place in his heart for Huntington's Disease patients and their caregivers.
He has set my mind at ease several times over concerns I have with Brad's condition. I could not imagine having Brad under anyone but, Dr. Dayalu's, care.
A lot has changed since Brad's diagnosis (2014). As I was going through his medical records the other day, this letter (in this blogs photos) stopped me for a brief moment. I remember how much paperwork and documentation was required for the disability process and what a fight is was. We kept thinking how wrong it is to have to FIGHT for disability when your diagnosis is terminal. But that is behind us and Brad is now "labeled" in the system as, "disabled". Not disabled from a work related accident or the like. Not from age related back issues or some type of disorder. He is disabled from a monster of a disease that is taking away his abilities to function. And yes, a terminal one at that. I have had some time to cope since the confirmation of his disease, but I still ask myself "why?" every single day. Why does such a disease even exist? Although some things don't make sense to me; like why bad things happen to wonderful people, but some do make sense. Why Brad and I met that evening in 1997 and why we couldn't stay apart makes complete sense to me now. He deserves the best care possible while he battles this disease and I was the chosen one. The chosen one to spend years of building beautiful memories with him. To share my two sons with who he treats as if they were his own offspring and was given the opportunity to experience what fatherhood is like without the risk of passing on a mutated gene to them. It warms my heart to see his face light up when he mentions their names and how he speaks of them with such pride. As hard as it is on us to watch Brad change, nothing can ever change the Brad we know and love. The Brad that is in our hearts.
As we carry on with preparation for our future, Brad has been keeping busy with the renovations on our home. Some walls have been knocked down, new flooring is being installed throughout, and we now have a nice wide sidewalk. It is a good thing for him to keep busy/active. It is not good for him to stay sedentary in his recliner. He continues to stay positive and his spirits are very good. I have noticed that he gets tired easier now. Too many calculations, measurements, and other thought processes wipe him out. I've noticed other changes in him as well. Changes are to be expected. Progression is to be expected. And every time a change or a sign of progression occurs, it feels like a backhand to the face. But, of course we carry on. We are in no rush on the home renovation and he can work at his own pace and he has a lot of helpers that have his back. I reminded him a few times of this when I felt that he was overdoing it. I just wish I saw him chilling in his hammock more often as summer is almost over.
In the end, we can prepare as much as we can, but we do know that we have no control over what is to come. We will deal with it day by day. As for now, we live our lives with as much enjoyment as possible. We have a senior in high school this new school year. Both of our boys are prime examples that with support, love, and determination, you can beat certain challenges and fears. They make me very proud. It's the bond that we have that holds us all together. We will "carry on" with a smile full of hope, love, enthusiasm, and of course, determination. 💙😎