Navigating my HD Journey: A Recent Update

 

Hey guys,

I've been debating whether to write this blog because it's still fresh, concluding just in February. But I think it's important to lay it all out for you. 

Every year, I have this big annual checkup with my whole squad of Huntington’s disease specialists and neurologists at Kaiser. It's always a bit nerve-wracking because it’s tons of tests, and after four hours, I’m exhausted. The experience is really hard but it’s an important benchmark to track how I’m doing and how the disease is progressing and what medical support I will need for the upcoming year. 

This chapter of the story began in Spring/Summer of 2023. It was rough. I dropped weight, got and stayed sick, and couldn't sleep. Sleeping issues are especially unusual for me, I could snooze through anything since I was a kid. My sister-in-law even started voicing concern, wondering if it was my HD or something else. So, in August 2023, I went to my HD specialists, and found that yes, some of it was my HD, and some was just plain stress. They wanted me to try meds to fix everything – sleep, weight, movement, focus. I told them I would like to try all natural solutions before moving to prescription ones. 

I've never been big on pharmaceutical medications, except for the 2 ½ year trial I participated in that I’ll tell you about soon. Since the beginning I’ve had my mind set on keeping off them for as long as possible. Eating clean, taking my vitamins, consistently going to the chiropractor, me and my husband don’t even use over-the-counter meds. Not perfect, but we really believe in a natural-first approach.

Fast forward to my annual appointment in February 2024, I went into the appointment feeling positive all things considered. In 2023, I had developed swallowing issues and some additional involuntary movements and twitches. But, on the plus side, I was working with a speech pathologist and was seeing promising results. I also gained back some weight and was getting better sleep. Unfortunately, the doctors were insistent on prescription medication this year due to the increase of symptoms. Thankfully, it came with the promise that I could get off them if they weren’t helpful and the assurance that they would be easier to come off without withdrawal symptoms. The doctors also dropped the bomb that I shouldn't be driving anymore. That one hit me hard since I've always loved hitting the road. But, they said I could get back behind the wheel if I took the meds and retook the test and passed. With that incentive, of course I said yes to the meds.

I took that medicine for three weeks, and let me tell you, it was rough. I was depressed, crying daily instead of my usual upbeat self, and feeling like a total zombie, couldn't string two thoughts together. I am off those meds now and thankful to have it in the rear view mirror. 

That leads me to where I’m at today, the next steps I’m taking. We were recommended a top-notch holistic neurologist a few years ago, but since he was not covered by insurance we put off the appointment at the time. For my 40th birthday this March my family and friends got me the best gift and set up and contributed to a GoFundMe for the neurologist costs. My appointment with the holistic neurologist is next week and I’m so thankful and full of gratitude.

Just wanted to share all this with you so you're in the loop on what's been going on lately. Hopefully, it sheds some light and gives you a little hope, too.