Ernie Posted October 20, 2009 Report Share Posted October 20, 2009 Hi everyone,Welcome to the newbies.I have not posted in a few months because I have been busy living my life.My health has improved lately. I have been going out all summer to parks, taking pictures and going on rides.I went to see the number one world researcher on muscle paralysis and he is interested in my case.As some of you remember as was bedbound and wheelchair bound for 7 years. Then I went to rehab for 9 months, then I took a gym class with older people for 9 months and now I am taking private balroom dancing classes with my husband!!!!For 2 years I went to the hospital 5 days a week every week. It was a full time job but it paid. I am glad of the progress I made. I keep my fingers crossed that I will keep on improving or at least stay at the same level.I still have to sleep 12 hours a day, and cannot work but it is better than fainting every single time I stand. I am now able to do some cooking and have some sort of life. I can go out alone and dance for a few minutes, rest and dance again. My legs are getting stronger so I hope that in a few months I will be able to do more. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted October 20, 2009 Report Share Posted October 20, 2009 I'm so glad to hear about the gains that you made! Quote Link to comment Share on other sites More sharing options...
pat57 Posted October 20, 2009 Report Share Posted October 20, 2009 WOOHOO! Quote Link to comment Share on other sites More sharing options...
ana_22 Posted October 21, 2009 Report Share Posted October 21, 2009 EXCELLENT NEWS!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 21, 2009 Report Share Posted October 21, 2009 Ernie-Your post made me smile Hope you keep seeing improvement.Julie Quote Link to comment Share on other sites More sharing options...
Maxine Posted October 21, 2009 Report Share Posted October 21, 2009 Ernie,I'm so happy for you! I've seen you when you were doing pretty bad, and I have seen you paralize. It's so nice to hear you have more of a social life, and you can enjoy a bit of dancing with your husband!Ball Room Dancing---------------How about that!It's also very cool that you have a top researcher in muscle paralysis who is interested in your case.I'm praying that your health reamins stable for you. I have seen some of the horrible times you have been through.BIG HUGMaxine :0) Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted October 21, 2009 Report Share Posted October 21, 2009 Ernie,I'm glad to "see" you again, and even more glad you've been gone! Here's to continued improvement!Amy Quote Link to comment Share on other sites More sharing options...
Brye Posted October 21, 2009 Report Share Posted October 21, 2009 Thanks for sharing. It's so nice to hear that there are those who are doing better after long struggles. Thanks for taking the time to update!!!! It gives so much hope!!Brye Quote Link to comment Share on other sites More sharing options...
shadesofgrey49 Posted October 21, 2009 Report Share Posted October 21, 2009 That's so great! Quote Link to comment Share on other sites More sharing options...
goldicedance Posted October 21, 2009 Report Share Posted October 21, 2009 Mazel tov!Simply fantastic!!! Quote Link to comment Share on other sites More sharing options...
daisy Posted October 21, 2009 Report Share Posted October 21, 2009 That is awesome news!!!! So very happy for you and hope and pray you continue feeling so well Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 21, 2009 Report Share Posted October 21, 2009 Hi Ernie,I was so happy to see you post again after such a long time away. How wonderful that you're doing so well and dancing, even! It gives me hope that someday I'll be able to dance again, too, something I've really missed. I hope to see you post more often now, and please keep us informed on how things are going. Yay for you!Cheers,Jana Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted October 21, 2009 Report Share Posted October 21, 2009 YAY! Quote Link to comment Share on other sites More sharing options...
Ernie Posted October 22, 2009 Author Report Share Posted October 22, 2009 My dear friends,Thanks for being happy with my progress.I will still be busy this fall and winter because a researcher wants me to recruit 40 members of my family to help find the genetic mutation.So I have to do their medical history, hire a nurse to take the blood, send the blood and organise everything else around the research.I will keep you posted on the progress of the research. Quote Link to comment Share on other sites More sharing options...
persephone Posted October 22, 2009 Report Share Posted October 22, 2009 YAY ERNIE! Quote Link to comment Share on other sites More sharing options...
erik Posted October 22, 2009 Report Share Posted October 22, 2009 That is wonderful. What truly amazing effort and progress! I'm sure you will continue to get stronger. That is remarkable. Quote Link to comment Share on other sites More sharing options...
Maxine Posted October 22, 2009 Report Share Posted October 22, 2009 Ernie,Thanks for being in the research, and including your family. This will help all of us who deal with dysautonomia, especially those with genetic mutation.Your a brave person, and you have a kind heart to reach out to others the way you do.Maxine :0) Quote Link to comment Share on other sites More sharing options...
Rachel Posted October 23, 2009 Report Share Posted October 23, 2009 Hi Ernie,Thanks for checking in with us. It's great to hear that you've had such improvements! I hope you continue to improve.Rachel Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted October 23, 2009 Report Share Posted October 23, 2009 Congratulations Ernie!!! Thank you for letting us know how you are doing! It is great to hear great news! You deserve it!Thank you for doing this research study and working again with your family to complete it. Keep us updated on how it goes. I hope that it yields useful information to your family.YAY Ernie!!! Quote Link to comment Share on other sites More sharing options...
Gracefulprincess Posted October 24, 2009 Report Share Posted October 24, 2009 Yeah for Ernie....so happy that you're doing well!!! Quote Link to comment Share on other sites More sharing options...
Maxine Posted October 24, 2009 Report Share Posted October 24, 2009 Hi Ernie----------- What's the name of the top researcher?It will be interesting to see what he finds out.HUGS,Maxine :0) Quote Link to comment Share on other sites More sharing options...
Ernie Posted October 25, 2009 Author Report Share Posted October 25, 2009 Hi,He is a top notch researcher who has already found some other genetic mutation. He has a personality similar to Dr Grubb. He is very human, knowledgeable and compassionate. Everybody loves him.I am very optimistic and enthousiastic about this doctor.Maxime, I will PM you with more info. Quote Link to comment Share on other sites More sharing options...
coloredblood Posted October 25, 2009 Report Share Posted October 25, 2009 GO YOU! That's wonderful. And dancing sounds like so much fun! ~nancy Quote Link to comment Share on other sites More sharing options...
Maxine Posted October 25, 2009 Report Share Posted October 25, 2009 Thanks Ernie--- Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted October 26, 2009 Report Share Posted October 26, 2009 ernie how wonderful!!!!!!!!! Im so very happy to hear that you are improving that is fantastic to make such a come back after how sick you were... Im so glad that you are dancing too how fun!!!!!!!!I wish you much continueing success in dancing, life, and your researcher! many hugs!dizz Quote Link to comment Share on other sites More sharing options...
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