Hi, I'm Nell, Loobies Mom. Many of you probably know Lewis as he tells me he has communicated through this site many times. He has asked me to be his advocate and I, of course, agreed with much enthusiasm. It feels very good to be able to do something really constructive. I have raised money, cried, prayed, and hoped beyond hope that everything he tried would work miracles. It's tough being the Mom of an adult child who is sick. When we first found out about his MS, I wanted to sweep him up in my arms and take care of him, find the best of the best, etc. Luckily, he is a very resourceful and independent person and has been an inspiration to me. He has given me the strength and hope to be positive about his choices. So, I will do everything I can to help with whatever he wants. I have certainly learned a great deal through navigating this site. I'm trying to educate myself as best I can. There is so much information, and I will keep reading and learning.
In closing, I just have to mention that my son is such a great person! He is loving, compassionate, bright, successful, funny and loves his family with every fiber of his being. If you have any ideas on how to be a good, no great, patient advocate, I'll take any and all suggestions.
Loobies Mom
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loobiesmom
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cheerleader
- Family Elder
- Posts: 5361
- Joined: Mon Sep 10, 2007 2:00 pm
- Location: southern California
Hi Nell!
Welcome to the gang. I think you're already an amazing advocate. We agree with you that Lew is a special man. Now we know where he gets that big heart from!
It's tough having MS, and it's tough watching someone suffer with MS. I guess the best thing to do is help your loved one feel a bit more in control, encourage them, help them navigate the medical mumbo jumbo, keep their spirits up, but let them complain/grumble/cry without fear of being ignored or "fixed." It sounds as though you are doing all of these. Let us know how we can help you in this journey. Lots of great people here-
best,
AC (the aging cheerleader)
Welcome to the gang. I think you're already an amazing advocate. We agree with you that Lew is a special man. Now we know where he gets that big heart from!
It's tough having MS, and it's tough watching someone suffer with MS. I guess the best thing to do is help your loved one feel a bit more in control, encourage them, help them navigate the medical mumbo jumbo, keep their spirits up, but let them complain/grumble/cry without fear of being ignored or "fixed." It sounds as though you are doing all of these. Let us know how we can help you in this journey. Lots of great people here-
best,
AC (the aging cheerleader)
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Bubba
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Re: Loobies Mom
Just being there for him, and doing what you are doing is awesome! I know he greatly appreciates it. Keep up the great work Mom!loobiesmom wrote: If you have any ideas on how to be a good, no great, patient advocate, I'll take any and all suggestions.
Ditto all that Ms Nell! Glad you are here! Lew is a wonderful person and well liked by all.
I have MS myself and my greatest fear is that my kids will show up with it. I can't stand the thought of that and my hopes for a cure come in no small part form a desire to be free of the worry they will get it.
Lew is investigating the CCSVI model: I already had dopplers and did have the venous reflux so I am hopeful we already have the answer there... Early days though! We'll see!
I have MS myself and my greatest fear is that my kids will show up with it. I can't stand the thought of that and my hopes for a cure come in no small part form a desire to be free of the worry they will get it.
Lew is investigating the CCSVI model: I already had dopplers and did have the venous reflux so I am hopeful we already have the answer there... Early days though! We'll see!
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Artifishual
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Hi Nell,
First let me say that it is not hard to figure out where Lewis gets his character from and i would like to commend you for joining the family here at ThisisMS. Out of all the wonderful people here I would have to say that Lewis is one of my favorites. There have been many dark times that I have had no one to talk to that would understand the things that a younger male goes through with ms, but Lew. He freely shares not only his experiences and knowledge, but also his huge heart. I can honestly say that even though I have not and may never meet Lew in person that he truly is like a brother to me and I value his friendship as so. My week would not be the same without at least one correspondence with Lew. Thank you again for joining and look forward to getting to know you.
Shannon aka arti
First let me say that it is not hard to figure out where Lewis gets his character from and i would like to commend you for joining the family here at ThisisMS. Out of all the wonderful people here I would have to say that Lewis is one of my favorites. There have been many dark times that I have had no one to talk to that would understand the things that a younger male goes through with ms, but Lew. He freely shares not only his experiences and knowledge, but also his huge heart. I can honestly say that even though I have not and may never meet Lew in person that he truly is like a brother to me and I value his friendship as so. My week would not be the same without at least one correspondence with Lew. Thank you again for joining and look forward to getting to know you.
Shannon aka arti
Wow! Loobie's Mom! how cool.
Lew is just an amazing person. I just said the other day he was one of the people on here that made me laugh, cry and keep things in perspective. I think he is an awesome man and you are a very lucky mom!
Cat
Lew is just an amazing person. I just said the other day he was one of the people on here that made me laugh, cry and keep things in perspective. I think he is an awesome man and you are a very lucky mom!
Cat
Holly - Shine On You Crazy Diamond - Pink Floyd
9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Loobie
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- Location: Dayton, Ohio USA
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Please read my Loobies mom disclaimer in the CCSVI, because as anticipated by that disclaimer, you all are making me 
I am grateful to have her helping me out with the CCSVI. I am just wanting to get this going NOW and it's just so hard after a full days work and then maybe a soccer game or swim meet to have the energy to dive in and "keep up". That's what I was feeling like, like the CCSVI stuff was passing me by and I was going to miss out. Well hopefully now she can help out even though she's a senior citizen (just kidding mom ) and I can do what I need for my family and someone can work on it while I'm working. Like if I have to go out to Cali. if we can't get the Ohio State docs to bite someone can make good arrangements. If I did it, I'd get on the phone, book a couple of flights and rooms, cost be damned, because I wouldn't have enough energy to sit and find deals and what not. Well doing stuff like that in this $$ climate is really foolish, but you all know how you do what you've got the energy to do. Not to mention the fact that my lovely bride is now a full time member of the full time employed club and we have even more stuff piling up at home like yard work, yada, yada, yada. So I may even post an attitude of gratitude post and embaress you back mom!
So CCSVI can be my "MOM!!, the meatloaf!!" incident .
I might even post a pic of us together and you all can see why you all think I'm so damn handsome
Ha,Ha! And since her last name is Bonaventura, I think we'll send a big pot of homeade Italian Wedding soup to Zamboni. He'll love it, take a two week vacation over here and we can all get our pinched veins fixed by the man himself!
I am grateful to have her helping me out with the CCSVI. I am just wanting to get this going NOW and it's just so hard after a full days work and then maybe a soccer game or swim meet to have the energy to dive in and "keep up". That's what I was feeling like, like the CCSVI stuff was passing me by and I was going to miss out. Well hopefully now she can help out even though she's a senior citizen (just kidding mom
) and I can do what I need for my family and someone can work on it while I'm working. Like if I have to go out to Cali. if we can't get the Ohio State docs to bite someone can make good arrangements. If I did it, I'd get on the phone, book a couple of flights and rooms, cost be damned, because I wouldn't have enough energy to sit and find deals and what not. Well doing stuff like that in this $$ climate is really foolish, but you all know how you do what you've got the energy to do. Not to mention the fact that my lovely bride is now a full time member of the full time employed club and we have even more stuff piling up at home like yard work, yada, yada, yada. So I may even post an attitude of gratitude post and embaress you back mom!So CCSVI can be my "MOM!!, the meatloaf!!" incident
.I might even post a pic of us together and you all can see why you all think I'm so damn handsome
Ha,Ha! And since her last name is Bonaventura, I think we'll send a big pot of homeade Italian Wedding soup to Zamboni. He'll love it, take a two week vacation over here and we can all get our pinched veins fixed by the man himself!-
loobiesmom
- Newbie
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Thanks
It was so much fun to read all your replies to my introduction! I was so excited to find them posted. Thanks so much.
Loobies Mom Nell
Loobies Mom Nell