Jump to content

Recommended Posts

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.

Link to post
Share on other sites

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 HUG

Maxine :0)

Link to post
Share on other sites

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

Link to post
Share on other sites

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

Link to post
Share on other sites

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.

Link to post
Share on other sites

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)

Link to post
Share on other sites

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!!! :rolleyes:

Link to post
Share on other sites

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.

Link to post
Share on other sites

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

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...