When You’re Doing it Right and Someone Else is Stupid

As if a giant sign out of no where, when I was trying to find something lighthearted to blog about after my last one this thing happened.

The setup: my youngest son is in the second grade, there are only four handicap spots at his school. Since mid-way through first grade I have had him come to the car at the pickup loop so I don’t have to be there an hour early to get a spot. This means I rarely use a spot any more. I have posted numerous times on the parent Facebook group for the school about my service dog because I know the kids will tell the parents and the parents usually have questions, because I “look normal”.

Today, I had to park (an hour early) to go in an buy raffle tickets for a Halloween Bash they are doing at the school. I do not use a handicap placard because my disability will only get worse and there is no cure, therefore, my license plate sports the international symbol for disability, smack dab in the middle of the numbers. In addition to that, the back of my SUV has a sticker that says “Service Dog on Board”. I am the only parent at this particular school who uses a service dog on the property.

When I got back to my car, after most of the cars had left, there was a post it note on my driver side window; “Where is your Handicap Plackard??” Grammar and spelling aside, my brain might be shrinking but I am not that stupid yet, I was enraged. I immediately felt my blood pressure rise and had to take a beat.

I am the biggest fucking advocate for those of us with disabilities, I talk to the principals at both of my kids schools about needing more spaces for us. During events I ask about the possibility of blocking off some regular spots for more of us so we can all park. We are a weird little group, those of us who are disabled. I get seriously pissed off when people park in the disability spots without the appropriate tags, but I check the license plate first and placard second.

Is this person someone with a disability and just an ignorant asshat, or are they a normal person feeling the need to make them-self feel superior. Either way, they only succeeded at pissing me of, publicly shaming them on Facebook, and now here and now everyone knows they can’t spell and they don’t have all the information they need to actually make a difference.

Would this same person put this note on the car of one of the disabled veterans that park at this school? They don’t have the handy little wheelchair on a plate or a placard, they get the dignified DV on their plate. It commands respect and I would be livid if I witnessed this happen to them.

How dare you make me justify my disability in a public forum because you leave a cowardly note on my car. You have no clue what I go through everyday just to live, let alone participate with people socially or be there for my kids. I am bombarded with questions every single time I leave my house with my service dog. I expect it, I do not enjoy it, it adds stress and anxiety to my life but I answer the polite questions nicely, the not so polite ones get curt answers.

I have not had to justify my disability to anyone since I was in Europe last year at the Louvre when some lady (with a tour group) tried to tell me I could not use the elevator because it’s only for the disabled. “I AM disabled” I responded loud enough to get the point across.

So once again, I feel that my multiple sclerosis is not enough for the mass public. When my legs stop working and feel like jelly, when one leg doesn’t remember what to do and just kind of drags along. When I have pain in every nerve in my body because I over heated from outside temp or being surrounded by too many people.

You know what though, my MS is enough, my life is harder than any “normal” person can even comprehend. So to you, cowardly note leaver, fuck off. I did everything right and you are a bully.

Multiple Sclerosis Anniversary

Exactly 5 years ago today I got my official MS diagnosis. It feels like so much longer but since it can take over a decade for a MS diagnosis I guess that’s why.

MS sucks, it sucks super hard, for me anyway. Every person’s MS shows up with different symptoms and/or severity.

From 2016 through 2017 my brain volume measured the same. From 2017 to 2018 it decreased in volume compared to other women my age with MS by 11%. From 2018 to 2019 it decreased another 16%.

My “norm” went from the 91st percentile in brain volume compared to other woman with MS in my age group to 64th percentile in 3 years.

While the scans show no new lesions it cannot measure my symptoms or disability. My EDSS score has been 4.5 since a study I did for a neurophysical therapist in 2016. The only way it increases is if I go to a wheelchair.

I see posts about people being “warriors” and envy them. I wonder how they can stay so positive and hopeful. What’s the secret? Is their MS not as sucky as mine or am I just weak?

People have asked my opinion about Selma Blair and her bringing light to this disease. At first I was super pissed about it. Good for her, she has money and unlimited resources and probably doesn’t have to worry about working to survive.

The treatment she chose to under go is not something available to those of us with the same disease because insurance only covers it for most as a last resort or not at all.

Here’s what I do know, I can’t move to Europe where stem cells are approved form of treatment. I cannot afford to do it on my own, especially since I only got a 15 month break from some of my symptoms not even all.

I know my boys need a mom, I know that my experience may help one person to feel understood and less alone. I don’t know what the future holds or what it will look like.

I hold some semblance of hope that treatments will get better before it’s too late. Someone out there hold an idea on how to fix our brains, they just may not know it yet.

The Incredible Shrinking Brain

Like Alzheimer’s, Multiple Sclerosis is a neurodegenerative disease.

Neurodegeneration is the progressive loss of structure or function of neurons, including death of neurons. Many neurodegenerative diseases – including amyotrophic lateral sclerosis, Parkinson’s disease, Alzheimer’s disease, and Huntington’s disease – occur as a result of neurodegenerative processes. Such diseases are incurable, resulting in progressive degeneration and/or death of neuron cells.  As research progresses, many similarities appear that relate these diseases to one another on a sub-cellular level.

First, everyone needs to know that starting at the age of 40, your brain will shrink about 5% every 10 years. This is a normal part of the aging process, just like wrinkles in you skin, gray in your hair our brains show signs of aging. Once a person reaches the age of 60 the atrophy becomes a little quicker.

People with neurodegenerative diseases will experience more atrophy at a faster rate. Atrophy of the brain happens with neuron cell death, and the connections between those neurons.

High Dose Biotin (300mg) has been shown in several studies to help slow down atrophy in MS brains. This B vitamin is considered safe to take at high doses because your body does not store this and just gets rid of any extra. The recommended daily dose is 30mcg for normal, healthy people. It is thought that high dose biotin can help repair the damaged myelin around the damaged neurons. Studies are happening around the world for Primary Progressive and Secondary Progressive Multiple Sclerosis and how high dose biotin can possibly slow the progression of the disease and assist with pain, energy, vision and partial paralysis.

In Alzheimer’s patients, low hippocampal volume is the marker before any other symptoms show. In MS patients the atrophy does not stick to one particular area of the brain. Since brain atrophy causes diminished communication between neurons, and myelin break down does the same it’s not really surprising that atrophy is increased in those with MS and causes more disability progression.

A paper published this year regarding a study of healthy individuals and MS patients looked at the lateral ventricular volume and white matter volume in similar age groups. The study showed that in people with MS showed that of the groups, 30-69 year old patients had increased lateral ventricular volume compared to “healthy” people. In addition, MS patients showed decrease in white matter volume for groups between the ages of 20-59 years of age.

Excitingly, there is software now that can automatically takes these measurements during the annual MRIs most of us MS patients get. At my local MS Center they use NeuroQuant software and the report is automatically saved on the disc with images when I leave with it the same day. NeuroSTREAM is just one of the other options, there are a couple others and with new technology advances I am excited to see what comes next.

I personally, have the last 4 years of my measurement reports and I keep them in my bullet journal I use to track symptoms, activities, and daily health stats like temp, blood pressure and others.

Not everyone is going to want to have this information and will just let their healthcare professionals give them the information they feel is valid, and that is completely okay. Personally, I love the information, I like having it ready and it gives me time to process the information and form educational questions that I feel are valid.

 

 

Need to Know: High-dose Biotin Protocol

High-Dose Biotin May Be an Effective Treatment for Progressive MS

https://www.mstrust.org.uk/a-z/md1003-biotin

https://www.mstrust.org.uk/news/news-about-ms/high-dose-biotin-withdrawn-european-licensing

https://www.healthline.com/health/brain-atrophy

https://www.ncbi.nlm.nih.gov/m/pubmed/31074192/

Brain Atrophy in MS Patients May Soon Be More Easily and Routinely Examined