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As I continue to chat with friends and other MS patients in my communities I’m keenly aware of how different so many of our stories are living with this disease. However, when it comes to phone chats or online discussions about our overall patient care (including healthcare, insurance, and meds), I find our stories become particularly diverse and sometimes appalling. I’ve noticed such varying degrees in our patient care (or lack thereof) I chose to include this as part of my topic for this month. The good news is people are talking, sharing, and the various MS organizations are listening, taking notice in order to make a difference. The bad news is things like this take time and patient care isn’t a “one size fits all” scenario. Change cannot happen overnight, but I do see the light at the end of the tunnel.

The importance of community

It’s important we take care of ourselves first, but part of this self-care involves reaching out to others. Whether it be via phone call, social media groups, or other platforms online. Remember to be responsible when sharing news, articles, and reports with others. I feel it’s of great importance we help others in need of guidance as best we can – all it takes is a moment. When in doubt, offer names of additional contacts, MS organizations or relevant resources with the most up to date, reputable information possible. Remember, you never know what is going on in someone else’s life where you just might be able to offer some support without even trying!

Rural versus urban living with MS

Just as the phrase says in the real estate business, “location, location, location!” If you live in a largely populated city, you’re much more likely to have access to reputable doctors, hospitals, transportation, therapy, and support groups. However helpful these benefits may be in regards to where you live, this does not always guarantee a perfect fit for you and your healthcare needs, especially if you don’t know what it is you truly need. If you reside in a more rural area or small town, this is not always the case. Too many people must rely on the nearest “doc in the box,” clinic or hospital. In fact, accessibility, care, assistance, and proper information is a big problem for those living in rural areas. Transportation issues and needs are multifaceted. Are you disabled? If you have a reliable vehicle, can you drive yourself, or do you require an aide or driver? If you do find a specialist outside your town, do you have available funds or time needed to travel to another city? Do you have a reliable cellphone or computer with Wi-Fi access? Do you have support from anyone near you? All of these issues can create more stress to the patient than they deserve.

Functional, Integrative Medicine

First and foremost, I consider myself lucky to live in a large city with medical care considered to be top notch and quite well known. I’ve been a patient at the MS Clinic at University of Texas Southwestern. This facility is known for its clinical care, research, and education. As of last year, I was having severe difficulties dealing with the side effects of yet another DMT, so one of the nurses invited me to consider trying out their patient program called “Total Life Care.” Without hesitation I agreed and set an appointment for my first appointment. This program meets four times a year and its intention is to improve the patient experience by fully bringing the patient into the picture as a person who is involved in the goals and decisions for improving living life with MS. Each appointment in this quarterly program is somewhat lengthy because it might include several hourly appointment/meetings with members of the multidisciplinary team such as, but not limited to:

• Physician’s Assistant or RN
• Research Staff
• Social Workers
• Dietician/Nutritionist
• Physical Therapists 
• Mindfulness/Spirituality Counsel
• Sleep Hygiene Counsel

My first appointment lasted approximately five hours, but it was worth it! You are listened to intently by all staff members. You aren’t judged, scolded, or talked down to. You’ll be able to discuss various accomplishments, successes, bad habits, and goals to address, then before leaving each staff member session, you’ll be requested to set a goal(s) with realistic plans as to how to accomplish your goal(s) by your next appointment. This is the basic routine every three months. I’ve certainly slipped up on some of my goals, but it’s ok. The point is to be true to yourself and try, try again!

During the past few months, I’ve discovered other friends with physicians who have also made changes in their MS practice which follow a similar type of format as TLC. I’ve also noticed more physicians and MS Clinics around the country following suit as they too are integrating conventional medicine with tools for wellness, holistic and functionality. I find this program to be a fantastic, honorable way to give patients a way to learn and play a more active role in their own self-care. This program has also shown to improve overall patient experience and satisfaction, compliance with appointments, meds and other lifestyle changes as they continue to navigate living life with MS. I now deal with issues relevant to secondary progressive MS, yet I remain optimistic as I continue to address symptom management as best as possible while implementing additional tools for self-care and lifestyle adjustments per Total Life Care. 

For further information on this topic see:

• Diana Logan, APN and Eliot Frohman UTSW, Total Life Care 
• Dr. Gazda, M.D., Destiny Epicenter
• The Breseden Protocol: Functional and Naturopathic Medicine
• Dr. Mitzi Joi Williams: Life Wellness