Have you ever walked into a room and forgot why?
Or went to the store and forget the one thing you went in there for?
Or forgot someone's name?
It happens to all of us.
It's frustrating for anyone, and it's usually dismissed as getting older, or as my friends like to joke, C.R.S, better known as Can't Remember Squat. Okay, okay, it's not “squat” but let's keep this rated PG.
It's annoying when these things happen, but when you have a neurodegenerative disease, what most people think of as a minor annoyance is an every day battle and it is evidence that the progression of your disease has advanced.
After taking Levaquin in 2006, I was diagnosed with the progressive form of Neurosarcoidosis, a neurodegenerative disease. I didn't find out until years later that a class of antibiotics called fluoroquinolones are linked to neurodegenerative disorders. Suddenly it made sense why my cognitive and motor function is in decline. Had I been warned of this risk, I never would have taken it. Sadly, the FDA has chosen to not warn doctors or patients of this risk. It was through a Freedom of Information request that the FDA report ever saw the light of day, and I'm glad it did so others can be warned.
Neurodegenerative disease describes the progressive loss of structure or function of neurons including death of neurons. Neurons don't typically reproduce or replace themselves so when they become damaged, or they die, they can't be replaced. The progressive form of Neurosarcoidosis is incurable and debilitating. There will come a time when I am no longer able to take care of myself.
That is a scary thought.
A lumbar puncture found elevated protein levels and elevated lymphocytes. A brain MRI found space-taking lesions. A biopsy of brain tissue showed granulomas- the tell-tale indication of Neurosarcoidosis.
Granulomas affect the way an organ functions. In the brain, they cause seizures, chronic meningitis, memory and motor impairment, and many other debilitating symptoms. It is extremely hard to treat.
It is amazing to me how things have changed. I used to have a near-photographic memory. I used to be able to look at something, or read something, and remember it.
Now that this disease is progressing and the memory loss is increasing, it has made things hard.
I've had to make allowances in my life to accommodate my new normal. My short term memory is very poor. I am losing a lot of my long term memory as well. I have no recollection of anything prior to around 13 years old. Age 13 to 28 are spotty. I see pictures and I can't place where the photo was taken. Most of the time I can't put a name to the person in the photo with me. This is especially distressing when it is a relative that I have known my whole life. When I look at photos, it feels like I am watching someone else's life.
- To help remember names, I use mnemonic devices. For example, we had an electrician come to replace the fuse box. His name is Richard. He was wearing a hoodie and it was made from a heavy material that looked like it had a wool blend. I am allergic to wool. Wool makes me itchy. So I remembered his name as RICHard because his hoodie looked ITCHy.
- In my phone, I assign photos to caller ID and I also put how I know the person next to their name, even family.
- My house is littered with Post-It notes. My memory has gotten so poor that I have had to leave a Post-It in the bathroom to remind me to brush my teeth, brush my hair, etc. As this progresses more I will have to leave Post-Its reminding me how to do those tasks. Using a white board and my Boogie Board have also been helpful.
- My medication is divided into colored containers. A Post-It reminds me which medications I need to take at certain intervals.
- I keep my purse near the front door. My keys are attached to the purse. You can't leave without your keys so anything I need to take with me, I put near my purse and keys. I also have a Post-It note next to the door as a secondary reminder.
- I find that keeping lots of short lists is less overwhelming than having fewer long lists.
- Repetition doesn't always help me remember something, but it does allow me to be less frustrated by the situation.
- Setting alarms on phone.
- My neurologist says that laughing activates different parts of the brain. I don't know how much this is true, but who doesn't like to laugh? I am lucky to be surrounded by people who make me laugh every day and I love watching funny videos on YouTube.
- I keep journals documenting every day the most mundane things, like what the weather is like, what I have for dinner, that I saw a bird in the bird house in the backyard, that I saw my elderly neighbor take his daily walk.
- I use the microwave as much as possible. If I use the stove, I make sure someone is home with me so I don't forget to turn it off.
I am 44 years old and relatively young. My mind and body will will continue betray me until it steals my breath.
Since the FDA themselves won't warn doctors and patients of the risk for neurodegenerative disease, it's up to all of us.
It is too late for me, but it isn't for you.
Quinolone Vigilance Foundation