California, USA
When were you diagnosed with MS? October 2010
What type of MS do you have? Primary-Progressive MS (PPMS)
#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?
When I was diagnosed, I was finally content to know I had something that wasn't cancer. At the time, there were no treatments for Primary Progressive MS (PPMS), so I started researching alternative treatments. I tried several things, before finding the one's that I liked. I tried the Walhs Protocol. It was hard. I used Low-level laser (light) therapy (LLLT) which is a fast-growing technology used to treat a multitude of conditions that require stimulation of healing, relief of pain, inflammation, and restoration of function. I stuck to this prior to Covid. I also used High Dose Biotin which took away my MS hugs and I'm still committed to Intermittent Fasting. But despite my efforts, the disease is still breaking down my body and I can only walk around my place with a cane. I'm working with the Cionic Neural Sleeve for my right leg which has spasticity and I am also looking at a new therapy by Dr. Folake Taylor who also has PPMS.
#2: What MS symptoms do you have and how do you manage them on a daily basis?
I experience bladder problems, so I eat pumpkin seeds to provide support. In addition to that, I also wear briefs or pads daily. I really wish I could purchase and use Sativex for my spasticity, but unfortunately, it's not available in the US. To manage my health, I take vitamin supplements such as B12 and D with K2. I also include POM juice and beet gummies in my diet. In the past, I used to juice greens with specific vegetables weekly. But since I'm now residing in an assistive living place, I can no longer do that. To stay active, I utilize a 2-motor elliptical vibration machine. However, fatigue still remains my most challenging symptom. At this time, I've had to switch from a walker to a cane for mobility.
#3: Who/What has been your most important support system?
My greatest source of support was my partner of almost 19 years. Although, my partner took sick last winter and passed away in May, I still have the loving support of my children, my mother, my sister, and my new friends where I live. I've joined about four MS websites and I've also joined a support group in each city that I have lived in. My circle of support and I, all participated in WALK MS for the first five years, after my diagnosis. These were certainly fun times spent with good company.
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
I started out with a cane and moved to a rollator/walker. Then I moved on to a specialized rollator that I could lay my arms on, but now, I'm back to a cane and a transport chair.
#5: How do you stay positive and motivated in your daily life? What do you do for self-care?
My faith and my friends help me stay positive. I also started a journal this year, since, I had to take early retirement. I focus on self-care daily. Especially since I started reading books about MS and nutrition.
#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?
My advice to someone newly diagnosed would be to learn as much as you can about your type of MS and start advocating for yourself when talking to your neurologist. Keep a log of what you experience, what treatments you try, and why, and keep abreast of what new therapies, devices, drugs, and diets are available. There are more Youtube videos out now specifically for the MS community to help us stay active and exercise too. Lastly, get on a gluten-free diet!
#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?
Although I don't have a specific mission or business, I make it a point to raise awareness about Multiple Sclerosis.
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