Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Good luck tomorrow David. Maybe you, Steve and I can get a group discount for the swallow boot camp in Seattle! I'll be darned if I don't have pneumonia again for the third time since November.
I also do the exercise you mention, Steve, laying on the back and raising the head to see the toes. They told me to do it for a minute at a time. After a year doing it many times a week, I'm up to 30 seconds for 10 times. I think that's about the hardest exercise I remember. I also lift the head straight up while laying on my back. That ones not so bad now the core is built back somewhat.
I also added a whole bunch of neck exercises to get rid of the neck brace and avoid a halo. So far so good. I've managed to build enough support with the little muscles even though my rhomboids and sternocleidomastoid muscles have completely corded out.
It must all be working because I have just a little neck discomfort at times. I've moved out my special neck stretches to once a month from twice a week a year ago. Overall with all the muscle issues I've gone from 3 or 4 hrs a week down to 2 hrs a month. I have not taken any pain meds or meds period for 54 weeks. A new record.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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