Meet - Phil See

Washington, USA

When were you diagnosed with MS? October 2002

What type of MS do you have? Relapsing-Remitting MS (RRMS)

#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?

At first, I was skeptical about the diagnosis. Especially since there was no prior occurrence of it in my family. However, even after seeking second and third opinions from two different medical centers and consulting with two other neurologists, the diagnosis remained the same.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

At the present, the only symptom I have now is numbness in my left hand, and it's barely noticeable.

#3: Who/What has been your most important support system?

My most important sources of support are my wife, longtime friends, and the awesome MS Center at Swedish Medical Center in Seattle. The Center generously allows me to utilize one of their rooms and provides parking spaces for the free "Get Back Your Music (GBYM)" one-on-one group neuroplasticity-invoking, jam sessions that I conduct. Through these sessions, musicians with neurological impairments are able to regain lost musical dexterity.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

NO.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

My belief in the potential of Neuroplasticity, an inherent capability in all human beings, keeps me optimistic. Witnessing it at work, improving the muscle dexterity and the quality of life in muscians keeps me motivated to keep the GBYM jam sessions going. I engage in self-care by playing musical instruments, as well as participating in activities that involve brain exercises such as puzzles, and maintaining an active lifestyle.

Watch the video below. It's a comprehensive video interview that shares my whole story, I also shared it with 220 clinical representatives from 60 different countries during a Worldwide MS Meeting held in Stockholm in 2019. The 28-minute video also features a clip from on of our GBYM sessions. You can access it via this link: https://www.youtube.com/watch?v=R0DdqSUzuiA.

#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?

When it comes to a neuro (nerve) ailment or a diease that compromises one's motor function in your limbs, and in my case, my left hand. I advise not giving up on your passions. Whether that passion was playing an instrument, skiing, tennis, jogging, walking, or whatever. If MS took that from you, take it back by relentlessly not giving up. Throw willpower, persistence, and repetition at it and your brain will eventually reroute/rewire the affected nerve pathways to an undamaged area and make that ability return. I am proof of this.

#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?

My Get Back Your Music program is a unique program that combines elements of physical therapy and music therapy together. My job is to facilitate these jam sessions designed to compel participants, (using their original instrument of choice), into trying to get back their lost musical ability. This is achieved by setting small attainable goals that will recondition their brain and invoke their natural Neuroplasticity process. I am also proof that it can be done. A composer of note with progressive MS heard my story and it compelled him to try to play the piano again, and that's what inspired me to start my free program.

Follow me on my socials:

https://www.instagram.com/get_back_your_music_/

https://twitter.com/GetBackYerMusic

https://www.facebook.com/GetBackYourMusic

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Meet - Derlene McPhail

Scotland, United Kingdom

When were you diagnosed with MS? February 2022

What type of MS do you have? Relapsing-Remitting MS (RRMS)

#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?

Before my MS journey began, I worked for 15 years within the community as a healthcare support worker. My job involved working with patients who were living with MS. I remember the first time I heard the words Multiple Sclerosis. I had no idea what it was or how it affected patients. Over the years, I always had compassion for the difficulties these individuals faced and aimed to gain an understanding of the illness. Come 2020, I began experiencing neck pain, and I was diagnosed with spinal lesions, with no known cause. Fast forward to February 2022, I was studying as a first-year nursing student, I had just returned from a holiday and was preparing to start a nursing placement in the hospitals. Over the course of a few days, I gradually began to lose sensation in my legs and torso until eventually, I lost all sensation from my chest down. I spent the next 2 weeks going through several tests. On February 14th, it was confirmed that I had been diagnosed with Multiple Sclerosis.

For me this didn’t come as a big shock, I knew I fit the criteria for MS. I chose to accept my diagnosis fairly quickly, as I knew this acceptance was the only way, I was going to be able to face it more positively. I made a decision then that it would not hold me back or define me. I completed an online placement while I was undergoing testing, and within a week of diagnosis, I started another nursing placement. Since then, I have continued my studies and I am now through my second year of nursing.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

During my relapse, I experienced a loss of sensation from the chest down, but fortunately, I regained most of my sensation back. However, I still have occasional sensory loss in my fingers and legs. Pain can be one of my most common issues. I know stress is a common trigger for MS, so I try to prioritize managing it in my life. I've opted to use a DMT called Kesimpta, which has been effective so far, but I don't see it as a magic fix. I believe it takes more than just a DMT. I also live a life of sobriety, and try to maintain a healthy diet and regularly keep fit. I took part in my first 10k MS walk which gave me motivation knowing, I could help others in the same position as me. I am far from being in perfect health. But I continue every day to make small changes and there’s always room for improvement.

#3: Who/What has been your most important support system?

My family and partner have been my biggest support. They are always there when I need reassurance and support on my more difficult days.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

At the moment, I manage daily activities independently without any assistance.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

I try to enjoy the little things in life. I try not to lose myself in all the "what could be’s" in life and just appreciate how things are! My job gives me purpose and keeps me motivated. I find physical exercise helps to keep my mood more positive and also keeps me feeling better.

#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?

Years of working with MS patients and now being diagnosed has made me realize how little people know about MS. It has also made me realize how important it is to spread awareness. Although a diagnosis of MS can be difficult, It has shown me that no matter how tough life gets there’s always the option to see the positive, stay strong, and never give up on your dreams.

#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. Follow me on IG: @delsober

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Meet - Rose Flaherty

Florida, USA

When were you diagnosed with MS? December 2015

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?

Back in 2014, I began experiencing instances where my knee would randomly give out, and I noticed that my gait was off. I decided to see an orthopedic doctor about it, who referred me to a neurosurgeon. The neurosurgeon then sent me to a neurologist, who ordered an MRI scan. After that, I went to an MS neurologist who specializes in treating Multiple Sclerosis. They ran more tests and confirmed that I had Primary Progressive Multiple Sclerosis (PPMS), which unfortunately has no cure. At the time, there were no affordable medications available other than off-label options. It was earth-shattering, to say the least. At first, I was in denial about my diagnosis, but as time passed, that was the wrong assumption as my MS continued to progress. Nowadays, I have to rely on a walker and scooter for my daily activities of living.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

I have almost no mobility left, and on top of that, I suffer from spasms in both my legs and feet. Earlier this year, I received a diagnosis of peripheral neuropathy. As a result, my feet and toes tend to swell up and turn red. I also experience a burning sensation, as well as pins and needles. It's not fun to deal with at all.

#3: Who/What has been your most important support system?

I got divorced two years before being diagnosed. Since then, I have had to rely on my family - specifically, my two older kids and my sister. I consider them all to be a great blessing in my life.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

Currently, I use canes, my walker, and a scooter.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

I've had to make a lot of changes to my lifestyle, and in coping with these changes, I mostly turn to prayer. Between my prayers, my family, and my special friends I push through.

#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?

Never give up !! When u need help seek it and be your own advocate.

#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?

Advocating for people with disabilities is my mission. Living with MS has taught me just how much we take for granted in our lives every day.

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