Hello!
Long time no see.
Why not?
Because I just didn't have the energy.
A few months ago just the simple act of showering or dressing for the day was leaving me exhausted. My "afternoon rest time" was more of a coma that would last 4-4 1/2 hours each day. I had just enough energy to bathe daily and try to spend time with people I loved. That's it. And things felt like they were just getting worse from there. I lived in fear of becoming bed bound.
I reached out to my muscular neurologist in a last "Hail Mary" plea. I let her know my fears and how bad things had become. She had one last suggestion that we hadn't tried yet. A new drug being used to treat muscular diseases (*off label) called Amantadine.
I started Amantadine about six weeks ago. The difference was immediate and drastic. I would call it a miracle. It immediately gave me more energy than I'd had in about five years. Not only that, but it helped decrease my vertigo symptoms as well. Something nothing else had been able to do, even Botox.
Then something even more fantastic happened. My "rest time" decreased to an average of two hours. I gained back 14 hours of my life per week. That is so amazing that I can't even express it. That's like all of the Harry Potter movies every week's worth of time.
Also what changed was that energy translated to more muscle strength. Even though it didn't help my muscles directly... having more energy meant I could accomplish more in a day, which often required muscles. Like cleaning, gardening, fixing my hair, putting on makeup. Things that before I had very little energy for I could now do back to back to back. Laundry, cooking, playing with my dog. You get the idea. All requiring muscle strength and stamina. So the more I did, the stronger my muscles became and I had a little more stamina each time.
And now the HUGE news.
Yesterday I did something I haven't done in five years.
I walked my dog around the block using just my cane.
Yup. It felt like I had just climbed Mt. Everest. I was elated.
I called my husband right away and he was just as excited as I was and so proud of me for pushing myself.
So yes, I still have my muscle disease. I haven't been "cured." But I have a huge chunk of my life back. I hope to continue to build on this. I will gently push myself and listen close to my body. I'm still down 30lbs from where I was last year, which is another thing to be proud of. No easy accomplishment. Any of it.
I'm proud that I asked for help. That I communicated what was going on with me to my medical team. That I listened and was always open and willing to try new things. And that I'm fortunate enough to have good medical care! I feel lucky, resilient and determined.
(I received no incentive to write this. Amantadine is also called Gocavori. Here's more information about it if you're curious. I don't have Parkinson's, but it still helps me.)
*"Off-label" means the medication is being used in a manner not specified in the FDA's approved packaging label, or insert. Every prescription drug marketed in the U.S. carries an individual, FDA-approved label. This label is a written report that provides detailed instructions regarding the approved uses and doses, which are based on the results of clinical studies that the drug maker submitted to the FDA
