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

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


Mental Health – My Story

By now you have hopefully read all the other mental health blogs I have posted so I am not going to explain the different types and definitions in here. This will just be me… as terrifying as that is for me.

As a person who is diagnosed with MS I can tell you the grief still hits me 5 years later. Of course I grieve the person I used to be, I grieve the person who I always imagined I would be. I have anxiety about being a mom and a wife with all of the unknowns of this terrible disease. Having no control of how my body behaves or how it will behave in the future is the hardest part for me when looking forward and making plans. I LOVE making plans, I like knowing what my schedule looks like for the next few weeks or months. I can plan my rest and chores and doctors appointments in there and perhaps some grown up time with friends and date nights with my husband.

I have anxiety about embarrassing my kids when I go places with them because I cannot control my body’s reaction. I have to use Oak as my brace and balance when out in public. If it’s too hot I leave him home (soon to be remedied by some awesome booties his new trainer told me about) so he is not walking extended periods of time on hot cement. When I don’t have Oak I use a cane, or a walker, and I am always very aware of how that probably makes them feel. It may just be in my head, I don’t want to be 30 something using a cane or a walker… I am not old yet!

I have a pit in my stomach caused by the dread I feel about my future. Will I be at their graduations? Will I be in a wheelchair if I am there?

In the span of 10 months, starting at the end of September in 2015 I was rear-ended 3 times. All three times my youngest son, who was 3 at the time was in the car. My therapist tells me that it’s not just “fight or flight” there’s actually also freeze. This is what I did, and do once I looked back on so many of the accidents I had in my life. I stopped short of a truck that stopped abruptly to avoid hitting a car stopped on the road that first time. I took a breath at my skills of stopping us safely and looked in the rear view mirror just in time to see a sedan NOT stopping as the sped toward my car. My SUV was slammed into the truck in front of me and the only two things that I thought were “but I stopped” and if my kid was ok. I was so concerned for my son that one of the men at the scene actually came around and asked me to please move the other side of my car so that I wouldn’t get run over.

Growing up in southern California in the 80’s seemed like such a dangerous place in the news and community. It most likely started with the abduction of Adam Walsh and then there were so many other missing children after that. A girl was taken from her home during a sleepover with her friends, helicopters flew around my neighborhood with a bullhorn announcing descriptions of missing children (this was pre-amber alert) and milk cartons were plastered with faces of kids who were no where to be found.

We were latchkey kids, my dad worked out of town mostly and my mom worked bankers hours and LA traffic is no ones friend. We were to come straight home, lock the doors and not answer it for anyone. If someone did come to the door we would turn off the TV and hide behind the furniture (because kids don’t realize turning the TV off only secures the idea that someone is home). I remember that our neighbors called the police one time because she was a stay at home mom and felt it was her place to get into our business of being home alone for a few hours. The terror that rose in me when the police came to the door was immeasurable. We refused to answer the door, we turned off all of the lights and we continued to ignore them even after one of the slipped a business card under the door. That was one of the times that my father must have been working locally because I remember he came home, gave the police and the nosy neighbor the what for and congratulated us for not opening the door. I don’t remember her being in our business after that.

When I was four I was cut in the arm by a pocket knife while visiting my aunt in Reno with my brother. I remember being put in the bed of my cousin’s truck because of all the blood and the 4 stitches required in my arm. I even bandaged my doll so we would be the same. About the age of 7, I was clawed in the eye by a cat that was thrown at me, and it required surgery to remove an oil gland from my eyelid, I had to wear a patch on my eye as school started that year. It was humiliating. We had earthquake drills at school to prepare the inevitable occurrence and there were many days we had indoor recess because the Santa Ana winds would blow all the ash from fires our direction.

School told us that if there was ever a fire at home we could not stop for anything, just immediately leave the house, of course as a child this would not work for me, what about my dolls or my favorite books, or clothes. It was so stressful to me that when my uncle accidentally showed up on my birthday one year (he wasn’t a kid guy and I still remember the uncomfortable look on his face when he realized it was my birthday) he said yes and took me to a store to pick out anything I wanted. Blissfully, I picked out a hot pink duffel bag, in my mind this solved one thing that was a constant stress for me. I now had a perfect place to put all of my beloved items in case of a fire, there would be no stopping, it was at the bottom of my bed and one swift move would be over my shoulder and out the door with me.

On my 7th birthday my dad took me to get my ears pierced, I was so excited. He took me to the mall and I selected my little studs and the girl at the shop pulled out this gun contraption. Did you know that these could fail to work properly? I didn’t, I soon found out they could though. The left ear she started with did not go all the way through the first time, the pain was still there but no stud. She did it again, at this point I was terrified but my dad was there and I was going to be brave. Eventually she did get both studs in but I will never forget the fear that day. When my holes closed up about 10 years ago from a lack of wearing earrings often enough I was very worried when I went to get them re-done. Thankfully, that time there was no issue but the anxiety was with me the whole time.

I was a very anxious child, I chewed my nails and worried about things I could not control. My parents did their very best at raising me with their life experience and what they knew. I never told my parents how scared I was or that I slept facing certain directions in my room depending on which way I thought a predator I heard about on the news would come in to steal or murder me. They didn’t know, because I did not tell them, I wanted to be brave and I probably wanted to be their favorite.

I have also been the victim of domestic violence and sexual assault, I have been lied to and cheating on by partners I trusted. I was bullied in school and teased because of my name, I got into fights and got cornered and jumped by girls. I lived in a world where being a girl wasn’t good enough, we weren’t male so therefore we are less. All of these things in my life were internalized, buried deep and how I tried to forget. Even when these things are not at the surface though, they change you, slowly until you forget who you are and who you want to be. You must face them to release its power over you and be healed, healthy and happy.

If you are reading this and don’t feel safe to talk to someone, or are worried about being judged, or are not ready to contact a therapist just know, I am here. I understand and if you want to DM with me, I will be more than happy to listen, read and lend a supporting ear to you.

ACEs – The Link Between Trauma and Chronic Illnesses

I know what some of you are probably thinking but just stick with me here. When I told my therapist I was going to tackle mental health on my blog she asked me if I was going to do a post on ACEs. I had NO IDEA what this was, she gave me a brief overview and I was hooked. When searching the internet about this thing I hadn’t heard of the term before but I knew there were studies relating trauma to chronic illnesses so of course I decided to break it down. There are a lot of people who want the summary and don’t want to do all the internet sleuthing that gives me a sense of control over all the things I cannot actually control, after all, knowledge is power right?

ACE stands for Adverse Childhood Experiences. The breakdown of this includes but is not limited to:

  • Abuse: emotional, physical and sexual
  • Bullying, Violence of or by another child, sibling or adult
  • Homelessness
  • Households with substance abuse, mental illness, domestic abuse, incarceration, parental abandonment, divorce and loss
  • involvement in child welfare system
  • Medical trauma
  • Natural disasters/war
  • Neglect: emotional, physical or both
  • Racism, sexism or any other type of discrimination
  • Violence in the community

Now you are supposed to count up how many of these things happened to you (there are technically 10). Here’s the thing though, trauma is anything that is a perceived threat to a person’s physical survival, overwhelms the ability to cope, causing a lack of power or makes them feel isolated and alone.

Studies have been done regarding the link of childhood trauma and future health issues. Two thirds of people reported at least one traumatic event in their childhood. 40% reported two or more and 12.5% reported more than 4 traumatic events during their childhood. When the researchers looked further they were able to link traumatic childhood experiences to adult diseases including cancer, heart disease, chronic pain, autoimmune diseases, diabetes, bone fractures, depression, obesity, smoking, substance abuse, high blood pressure, and the more trauma experienced the sicker the person was.

When I count mine up, it’s 7, 7 of the 10 experiences I had as a child. Seven is A LOT. That is not even including the things I grew up in Southern California being told that terrified me and kept me in a constant state of anxiety about my safety and well being. It also does not count separations like in the abuse section there are three types listed, am I supposed to count 1 for each type I experienced, I didn’t. Now I wonder if I am inadvertently causing my children adverse experiences because I am sick. Before the guilt spiral starts I am going to move on to more research data.

Oh good, there’s hope. If you are a person who experienced one or more (or many) of these you can work with a mental health professional and there are techniques to work through this. Eye Movement Desensitization & Reprocessing (EMDR) is one of them, it takes about 20 sessions and it desensitizes you to the memories so you are more like viewing it from a third person’s perspective and no longer have an emotional reaction to the memories. Somatic Experiencing, Advanced Integrative Therapy, EFT, Psych-K and Rapid Resolution Therapy (RRT). I actually had a RRT session with my therapist for my standard PTSD and it worked and it was amazing. I noticed a huge difference on the second day after the process. She did warn me that all my Complex PTSD may rise to the surface once it was resolved though.

Standard talk therapy can do more harm by re-traumatizing a person when discussing these childhood events though so you must have a person you trust who can help you address the issues with care in a safe environment.

Here is where removing the stigma comes into play again though. People who feel shame about getting help can get all sorts of illnesses, and autoimmune diseases from the trauma you try to bury deep, very deep down and then it’s not correlated. Lack of good, standard mental health care is an issue in the United States for sure, I can’t speak for other countries but I know how difficult it is to find a person you feel safe with and you can afford to see on a regular basis. My therapist originally didn’t take insurance so I paid for all my session out of pocket. Then she did take insurance but she was technically out of network and the insurance company wanted me to try the 100 people in network first. Uh, what the fuck? No, I had been seeing her for more than two years by that point and I sure as shit was not going to change who I talk to because she already knows all my issues.

ACEs can be worked through and if you are a parent and want to help your child who many be experiencing some of these life events, you can. There’s all sorts of websites that teach you how to make your kid resilient to the traumas. Provide a safe place for them to feel their emotions and discuss what’s bothering them. You may need to work hard at it though, I never told my parents any of my fears because I didn’t want to be a “bother” or seem weak. Kids pick up on more than you know so it takes intent to help, but it can be done.

Essential Guide to Chronic Illness, Trauma and The Nervous System: Keys to Quelling the Volcano