tag:blogger.com,1999:blog-10853043.post6230429158599296346..comments2023-10-04T06:54:08.484-07:00Comments on NF2 odyssey: Out and AboutRebeccahttp://www.blogger.com/profile/11258414765006397310noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-10853043.post-80282841777437123062009-10-28T09:00:38.101-07:002009-10-28T09:00:38.101-07:00We are so thrilled that your surgery went so well!...We are so thrilled that your surgery went so well! It is amazing that you are up and moving about so much, but I am not surprised! As long as I've known you, you have always been a strong, positive person and inspiration to all. We wish you all the best!!!!!Laura, Cody and Destinynoreply@blogger.comtag:blogger.com,1999:blog-10853043.post-57661332425260090172009-10-25T14:11:15.198-07:002009-10-25T14:11:15.198-07:00I am glad you were released and are on the mend! F...I am glad you were released and are on the mend! Fantastic!!!<br /><br />Facial function improves with time and use. You have already come a long way! With the face/mouth/throat, I highly recommend Chapstick moisturizing with SPF15 applied liberally and continuously (the stimulation of applying it and then pressing your lips together when it's on improves closure, as does the "sealing effect." And keeping our lips moist helps with dry mouth overall.) You can massage your cheeks and gums when you brush. Manual brushing movements are also great for hands and coordination pathways. When on roids, I drink tons of water, and that helps with everything. (Tapering off roids is another matter, but I would hope that you having a shorter and milder history with them will mean a smooth ride for you.) <br /><br />You can gently apply pressure in circular motions to your mouth and cheek areas, working from center outwards. And there's the old standby of annunciating the vowels and/or entire alphabet to keep things moving and strengthen mouth muscles. Doing shoulder rolls and paying some attention to your neck and shoulder muscles help too--strengthenening swallowing, even. <br /><br />The best way to remain patient is by focusing what IS working mentally and physically, and viewing any and all gains as icing, rather than anticipating limitations. Be receptive to healing, while being mindful of the present moment. ;-)<br /><br />You are doing great! And I am also of the school of finding high quality living in all functional states. Rock on, Beck!Jamiehttp://przybysz.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-10853043.post-53759060911780023312009-10-25T11:53:37.570-07:002009-10-25T11:53:37.570-07:00Hi Becky,
I can't do the climb for LLS but I w...Hi Becky,<br />I can't do the climb for LLS but I will be there to cheer you on. I am so proud to know you and believe me you are such an inspiration to me and to friends going through a rough time right now.Esther Gnoreply@blogger.comtag:blogger.com,1999:blog-10853043.post-66312043809868311372009-10-24T12:27:46.427-07:002009-10-24T12:27:46.427-07:00I know that you don't know who I am but I was ...I know that you don't know who I am but I was talking to my mom and decided to look for other people on here with her disease. I know how hard it is for you to be going through this and how hard it is for your family. I am 21 and have watched and helped my mom with this disease since I was 4. She's had 6 surgeries but only takes them out when they become too much for her or are life threatening.She's had surgery for tumors in her brain, spine, arm, uteris, foot, and leg. <br /><br />She has so many that just in her spinal cord they quit counting them after 40 plus the one in her brain is growing back. She is now completly disabled but still is so happy and hopeful. She does everything possible to help everyone. <br /><br />Good luck to you. If you ever want any info on stuff about NF2 and things we have learned about it let me know. With dealing with it for so many years and there not being many doctors that really are specialized in it. We had to teach every doctor every time what was going on with her. Keep strong and remember that there is a strong support group of family, friends, and other people with the same disease who will help you in any way they can.Anonymoushttps://www.blogger.com/profile/05038664763620919215noreply@blogger.com