My Story Battling GBS

This is my story battling GBS

On March 23 ,2014 I suddenly became ill and was diagnosed with Guillain-Barré. While spending a family day driving around the island I began feeling stiffness, pain and tingling in my legs, fingers, and jaw. By noon, I was unable to stand, use my fingers, and eat. I also had difficulty talking. Ui and the kids rushed me to the hospital fearing I had suffered a stroke. After a few days of test including CT scans, MRIs and a spinal tap, I was diagnosed with GBS. Shortly after my diagnosis I was admitted into the ICU and underwent Plasma replacement therapy for 10 days. By this time I had lost most function of my body. I Could not move my legs, hands, face and mouth. About the only thing I could move was my arms and my neck. I was also having respiratory weakness but thank God I was very fortunate because I didn’t require a ventilator and I did not have any numbness. To try and explain my condition best, my illness has reduced me into a 230 pound infant.
This was a very stressful, frightening and chaotic time for Ui and the kids. Ui never left my side and the kids sang with me daily lifting my spirits. I spent about 3 weeks in ICU and was discharged home on April 17. Before discharge I had a feeding tube surgically installed into my stomach to eat because I could not chew, swallow or close my mouth adequately. The most excruciating uncomfortable situation being paralyzed is the inability to scratch any itch on my body and not being able to close my mouth. I had to relearn how to blink, laugh or talk. The most discouraging things are, not being able to grin, smile and show any emotions on my face, sing and play any of my musical instruments.The inability to work to provide for my family. I miss cooking, tinkering around the house with my hands and Barbecuing at Waikiki. I really miss going to church and participating on the Worship Team. Also miss taking a swim at the beach going on walks and to the stores. And I really miss taking shower and giving hugs.
My wife Ui has been my rock, she never hesitated to assume the role of my caregiver. She cares for me 24/7 and learned quickly the meaning of a total assistants caregiver. Through her care for me she has demonstrated the true meaning of unconditional love and being my soul mate. She is also my advocate in seeking any medical and financial assistance. The most humbling experience for me is having to ask and rely on my wife and children to take care of me. Also the out pouring of wisdom and loving support from family, friends, neighbors and Church family.
The past 10 months home recovering has been the most vulnerable, stressful and humbling time our family has ever experienced.We have pulled together to tackle a multitude of medical, financial and emotional obstacles facing our family.
My recovery has been slow. I am now able to close my mouth, swallow and regain chewing. My talking is slurred but improving enough to talk on the phone.The strength in my arms are slowly improving but I am still unable to use my fingers or lift my arms above my head. I’m doing OK typing with my knuckles but I can’t hold a pencil or pick up the ukulele. My legs and feet are still unresponsive so I am unable to stand or walk. I have to be lifted into my wheelchair with a Hoyer lift to get around. I have been battling bouts of depression but singing and watching sermons on the Kalo channel has helped me cope. I also have nerve pains in my legs but I have been managing without medications. I spend my days playing and watching Mickey Mouse Clubhouse with my grandson Paoa, watching cooking shows on Food Network and singing along with my favorite music. I will be seeing a Neurologist for ongoing tests and treatment. I am also seeking ongoing speech, physical and occupational therapy to progress my rehabilitation.
Living through this ordeal has taught me not to take life for granted, especially my loved ones each and every day. This trial has brought our family closer together. and taught us to depend more on each other. Also humbling myself to ask and receive help from people. To be more patient and think before I speak. To be more compassionate and considerate to others.To ask and give forgiveness, especially to forgive myself. To seek and listen for God. To be positive that God has a miraculous plan for my life. To recognize God is present and working in my life.
The most inspiring thing for me now is spending quality time with my 3 grandchildren and watching them grow. To take the time listening and working through stuff with Ui. To spend time talking and building better relationships with family and friends. To spread awareness about my illness.
In closing I hope that this information has shed some light on any worry or fear. May it fill you with encouragement, wisdom and joy! Please do not hesitate to contact, call or visit us. Any contact helps me with my recovery and brings me joy! Please share this information with anyone you come in contact with, even if they are not acquainted with me.
God Bless, Nolan Arasato

My fundraiser website. http://www.gofundme.com/HelpNolan-Arasato