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Be Me Blog
February 2016
Using The Power of the Mind Overcoming Dis-Ease
This is a story about courage, perseverance, fear, sadness, inspiration and much more. I knew my mom was a special lady, but didn't know just how strong and determined she was. I'm not sure she had ever been tested this much to know the depths of these traits. When the sh?!*t hits the fan, how would you react?
In the summer and fall of 2014, my Mom, Jill, had been ill off and on. Didn't seem too out of the ordinary based on the roles she was juggling and wearing herself out (giving much of her time caring for others as her own health was being compromised). In the fall of 2014, she felt more tired and as she was recovering from a heavy cold, her voice seemed different. Jill has always had laryngitis whenever she got sick or worn down, but this was different. Her voice became slurred and the speech was slow, with a deeper tone. She started going to various doctors. There was no signs of a stroke. As her speech continued to deteriorate, her mother (my grandmother, who my Aunt and Mom were caring for) passed away. Without much time to grieve, we were going to multiple doctors including neurologists, ear nose and throat doctors and practitioners learning about their approaches. We ruled certain things out, but there was still was a lot unknown. She would get some relief with Acupuncture and Chinese Herbs along with one western medicine for Myasthenia Gravis.
This time last year we could still understand her slowed speech. While still going for various opinions without answers, speech therapy was put on hold until we had a diagnosis. Early May, one of the testing showed a cancerous nodule on one of her lungs. The doctor indicated by removing it, this may be a ticket to her speech based on the possibility of Lambert–Eaton Myasthenic Syndrome. So, she underwent lung surgery and it was removed successfully. However, to our dismay it didn’t help the speech and at this point she was mainly writing to communicate. In some opinions, they are thankful through these various tests that they found and removed the nodule. In my personal opinion, I believe with time and ways we were working on getting her well, the nodule would have shrunk and gone away. But….the fear of the unknown rushed the decision.
Over a decade ago, I began my own journey of health and wellness overcoming an auto-immune disease. After being highly medicated and told I’d be on medication for the rest of my life, my GI doctor recommended to have part of my colon removed. Thankfully, those suggestions were an inspiration to my awakening to ‘alternative’ health care. After many months of weaning off medication and not agreeing to the surgery, I took matters in my own hands. I began to learn about so many ways we can heal the body, remember there is a divine purpose and continue to have gratitude. Sometimes easier said than done. There are times I get sad thinking of my Mom suffering, but I let it go knowing this is her journey. She is riding this wave like a champ, experiencing and learning what she is supposed to.
Thankfully, as a family, we are all working together to support each other in many ways. Mom, Dad, my sisters and their families, her twin sister and others close to her are having a relationship in a different way- not necessarily good or bad, but just different. Along with Mom, we are all experiencing interesting and profound new things in life that have presented themselves under these circumstances. My sister’s and their families live out of town, so facetime is invaluable. We’re learning additional video chat ways so they can see each other and my Mom can still type to communicate with them or else she writes on her ‘board’ and holds it up to the camera. In an Ipad application, she types words and the application speaks them out. So if, for example, we are in the car together, we can still carry on a conversation. Without the Ipad, she also uses a Boogie Board to write and erase with a touch of a button. (the kids love it!) She misses being able to speak with her grandchildren, nieces and nephews. They all have been amazing in making her feel loved and included. It’s not easy for some people to know how to communicate with her and direct questions and conversation to those of us with her. Our best advice is to speak to her not around her. Give her time to write and respond. It’s hard when the conversations move quickly and she’s unable to participate.
Mom has seen top neurological specialists in the Tampa Bay Area, as well as the Mayo Clinic in Minnesota. The neurologist in Tampa suggested to get her affairs together with no hope and little direction. They said there was a 5% chance of her turning this condition around. With that, dazed and confused, my parents and I walked out of there hand and hand saying, “We will be that 5%.” The Mayo Clinic diagnosed it as a motor neuron disease called Pseudobulbar Palsy said to, “Enjoy and live life.” I was dumbfounded. Still no direction was offered from these highly regarded doctors. Although we choose not to identify my Mom with a specific title/diagnosis so she doesn't 'own' it, it has helped to release some fear, provide us direction on certain modalities to explore and ways to explain to practitioners.
This experience made me more confident in what I'm doing today with Kapok Pilates and Wellness exposing people to many ways of healing and living well while strengthening our own body and mind. We can make a major impact and contribution on our own health and wellness by being aware of our minds and ways to use this incredible tool. I was more determined and confident to continue down the ‘alternative’ approaches we were already doing.
At this point, she stopped taking the western medicine but stayed on the Chinese Herbs and Acupuncture with Bob Linde of Acupuncture and Herbal Therapies and ear acupuncture with Patrick Purdue, Acupuncture Physician of Purdue and Nielsen Wellness Center. My parents attend gong meditation with Travis Lacey, guided meditation with Shifu Orlando and crystal bowls meditation with Alex Nadeau at Kapok Pilates and Wellness. This is something they had never done before. Mom also listens to weekly inspirational calls from Alison J Kay.
Mom has regular treatments of Reiki and Energy Healing from Dr. Alison J Kay. She receives Cranial Sacral Therapy and Energy Healing from Elasa Tiernan of solTERRA. These ladies have not only done unquantified ways to maintain Mom’s health, but have given us hope in priceless ways and raising her awareness and vibration. This “voodoo stuff” to some people is hokey pokey, but her special wellness team is doing everything they can to get her in balance for the motor neurons to function again.
Thankfully she is determined! The energy work helps to clear blockages, balance, raise her vibration (vibrating high is a good thing, remember the Beach Boys….Good Vibrations) and more on a deeper level. During her sessions, she sees colors and sometimes has visions. Mom is trusting her intuition more than ever and making decisions in her highest good, instead of putting others before herself all the time. She is working with Dr. Julie Hunt of Mayer Chiropractic, who specializes in Orthospinology, Upper Cervical Care. Mom has done an extensive amount of testing at St. Pete Health and Wellness with Dr. Cole where he put together a protocol of nutrients and supplements to build the cells and overall wellness for the motor neurons to function optimally. My parents also worked with Sharon Kistler, a Life Coach, helping to find better ways to communicate and live together during this change.
The tongue has many responsibilities we don’t realize and take for granted. It is very challenging to get food from the front of the mouth to the back without the function of the tongue, therefore, swallowing saliva and food is very hard and timely. She carries a hand towel to help control the saliva. Simply drinking from a cup or a straw without the tongue is almost impossible. On a positive note, Mom continues to do things she enjoys such as traveling to visit her grandchildren, cook (especially since she is on a specific Paleo diet making sure she keeps weight on), garden, play tennis and exercise and spend time with family and friends.
My Mom is continuing to try new approaches but also takes time to be in the moment as the observer. This experience has certainly touched our lives in many ways and reminds us to be grateful. She's learned to use the chakras, the energy centers of the body, and as she visualizes symbols, colors, uses stones and crystals to support the body. She is beginning to add more sounds. I do Reiki on my Mom and Dad. My two sisters live out of town but keep her spirits lifted (and sometimes visa versa!) and continually supports her in creative, positive, amazing and powerful ways. Her twin sister, Judy, and soul sister, Sharyn, give her massages in their incredibly healing way. My Dad has been unbelievably supportive during the hardest challenge in his life (and they have three girls!). We all call the home phone to hear her on the phone message. Sometimes speaking to her twin sister, my Aunt, enables me to ‘feel her voice’.
We all have a life purpose and our experiences, young or old, are teaching us lessons and also inspiring and helping others. I share this, with my mom's permission, so if you or someone you know, is faced with the unknown, don't give up. Dig deep. Believe! I have a passion, more than ever, about what more is out there and my personal belief system on how powerful and amazing our body and mind are. I've learned more to trust my intuition, that gut feeling, and be more open to receive guidance and pay attention to the signs.
I'm so proud of Mom for being strong and determined, without ‘fighting’ this but accepting where she is today. She is ready, open and willing to sing loudly. We've had an amazing amount of support from family and friends which helps in tremendous ways that words can't express, unquantifiable. We are becoming more involved with a non-profit organization, Embracing Life Through Love which supports people and families of motor neuron disease.
I write for a few reasons: If you or someone you know has a story or symptoms to this and we can help each other, please share. Keep believing. With the power of her mind, determination and support of her family and wellness team, we are confident she will tell speak her story. She has already inspired others! We also want to reiterate the importance of surrounding yourself with positive influences. In reality, we are energy.
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