We have become more familiar with terms such as COVID brain fog, Alzheimer’s, autoimmune diseases and other brain disorders, especially since the pandemic. A neurologist is a medical doctor with specialized training in diagnosing, treating, and managing disorders of the brain and nervous system including, but not limited to, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), concussion, epilepsy, migraine, multiple sclerosis, Parkinson’s disease, and stroke. Most of us aren’t doctors. But we all are dealing with something and, at some point, acting as a caretaker to someone.
When we returned to work following the pandemic shutdown, my first in-person presentation was to a group of men, the non-smiling stern grandfather type. I called the presentation “Have Fun”. It sure seemed like an odd title right in the middle of the pandemic. I have since presented it a couple of times and it’s all about getting to know yourself – at any age. I start by asking who was bored all alone at home? If you answered, you were – you should see my presentation! The feedback I received at the first presentation and the subsequent ones was, that I made some great points. Self care, having fun, and knowing what you need are very basic things we should know. So why do we struggle with ourselves so much? That’s a long answer. But for now, let’s focus on taking care of our mental health.
My latest project at work is moderating a new initiative, The Alzheimer’s Association Book Club and Support Group, for my region. My library team and I have partnered with the Alzheimer’s Association and AARP for over ten years to bring support services to older adults in our communities. We have come to realize there is a real need in our communities for information and support. Libraries have reminisce programs, Memory Cafe’s, caretaker kits, and more. When the idea came up to broaden what we were doing, I jumped on it. Taking on new initiatives takes a lot of time, patience and teamwork. But serving the community, helping people, it’s why we are there. Here’s hoping 2023 allows time to form partnerships with local organizations that will come together for the betterment of all by resource sharing and support.
A few weeks ago another opportunity, a more personal one, came in the mail. MS Focus, the Multiple Sclerosis Foundation, sent out a mailing with information to my best friend’s home, Marcus’ home. On the back, there was information about their support groups and seeking interested people in leading. He contacted them about finding out more information. And a few weeks later, we have been vetted to begin an online support group for MS. Our group “We Are More: MS Support Group” will be listed on the MS Focus and Multiple Sclerosis‘ websites as an Illinois Support Group, the only one at this time. And since we’ll be on ZOOM, anyone (from anywhere) can join us. Not only am I excited to reach more people, help them get information and hear their stories. I am extremely proud of Marcus for his consistent encouraging and positive words.
Marcus was diagnosed with Secondary Progressive Multiple Sclerosis in 2015. One of the difficult things with any health condition is the diagnosis. Once you know what you have, once you can name it, you can research it, find proper medical treatments and homeopathic care. MS, like many other conditions, can be frustrating and difficult because it’s hard to diagnose. I read that MS can be difficult to diagnose, especially if you don’t fit the typical criteria. When I met Marcus, he was already in a wheelchair. But his infectious smile had me wrapped up in him since he said hello. Our friendship started when a mutual friend asked if he could come volunteer with us at our library functions. I was intrigued about why and how this light-hearted, funny, positive man was in a wheelchair. I spent the next six months combing through his medical records, researching doctors and MS. A wonderful book by Dr. T. Jock Murray Multiple Sclerosis: A Guide for the Newly Diagnosed really helped us understand more. I bought us each a copy to study and discuss. Marcus probably had MS years prior to his diagnosis and was on several medications that made living with MS even more complicated and painful. He finally found a wonderful doctor through Northwestern Hospital and became part of a case study with Ocrevus. Over the years he has dealt with the death of close family members, difficult everyday life experiences and then COVID hit him and the family hard. Before I met him, his struggle was different because he wasn’t sure what he was facing. Today, he knows what to expect and prays for the day he’ll walk again. Daily he gets out of bed and encourages others to live a faithful and positive life.
I have learned many things from Marcus and our relationship has strengthened my beliefs and values.
- You have to be your own health advocate. If you are unable, find a close confidant who is able and willing to do so. A second ear at doctors’ appointments is so important, especially if you have something that affects your brain or concentration. Bring a list of questions, a list of medications and surgeries/procedures and write down what the doctor says and recommends. Ask more questions.
- You have to do the research to understand your diagnosis, medications, therapies and more. Learn all you can.
- Lean into your faith, whatever you believe. You will need a higher power to pull you through the bad days and the stressful moments of living with a disease.
- Learn who you can trust. You don’t have to eliminate people from your life. But you don’t need to add extra stress to it either. And when you live with a lifelong disease, the last thing you need is to worry about basic life needs and safety.
- Encourage yourself. Encourage others. One helps the other.
- Know you are not alone. Even if you have a rare disease, you are never alone. Reach out to others in similar circumstances. Don’t isolate.
- Everyone is allowed a bad day. Don’t be so hard on yourself. Baby steps forward are better than no steps. On the days you can’t speak or are in so much pain you could cry – raise your arms over your head, sit by a window with sunshine, stand and breathe, or take a walk. When times are tough, we say “you do what you can”.
The Alzheimer’s Association has wonderful brain health information including the simple “10 Ways to Love Your Brain“. One of the simplest thing I have learned in my research on brain health is that our brain needs challenges, but they can be as simple or difficult as we want them to be. Though we resist change, it keeps your brain healthy. What you put in your mouth is just as important as what you put in your brain. Repetition gives us comfort, but it’s not stimulating. Eat in a different chair, brush your teeth with your other hand, take a different route home, read, do a puzzle, learn a new language, listen to different music, play a new game, etc.
Taking care of you means waking up each morning with a fresh start, doing what you can, and soaking in all life’s opportunities thrown your way. Come out of your comfort zone and pay attention to what is right before you. You are a gift. You have gifts to share. Take care of your body, your mind, your soul.
~I’m here to help
Tina
Resources:
We Are More: MS Support Group. Meeting on Zoom. If interested, email us: wearemorems@gmail.com.
The Alzheimer’s Association. Retrieved from https://www.alz.org/
Dementia Friendly America. Retrieved from https://www.dfamerica.org/
Multiple Sclerosis Society. Retrieved from https://www.nationalmssociety.org/
Multiple Sclerosis Foundation. Retrieved from https://msfocus.org/Home.aspx
Northwestern Medicine Multiple Sclerosis and Clinical Neuroimmunology Program. Retrieved from https://www.nm.org/conditions-and-care-areas/neurosciences/multiple-sclerosis-and-clinical-neuroimmunology-program