As much as I love to discuss and write about multiple sclerosis, I always feel underprepared and unhelpful when someone tells me that they just got diagnosed with MS or think that they have MS based on their symptoms. In the split second that follows someone saying those words, my emotions and thoughts zip around, wanting to be encouraging (without lying), helpful (without offering too much advice) and informative (without overwhelming anyone).
Since I find myself in this situation more and more frequently, I put some effort into putting together two articles to help us MS veterans ease the way for our newly-initiated MSer friends. There is also an opportunity to leave some comments of your own, either recalling the most helpful and supportive thing that anyone said to you right after your diagnosis or the thing that you wish someone would have said to you during that time.
Read the full articles:
As someone who is newly diagnosed, please, please, please,
Do Not Use the phrase,
“It could be worse, you could be dying.”
because let me tell you, most hours then, and most days now, I would much rather by dying than living with MS. At least dying has an end, MS offers no such “best before” date.
I actually have found MS to be ‘not a big deal’. When first diagnosed, I almost fell out of my chair, but my doc told me, “You told me you’ve been having symptoms for four years, what difference does the diagnosis make?”
Good point. Interferon is a miracle drug for me and the daily MS hassles are so minor in the great scheme of things that if I was confronted with a new MS person, I would just say, “Get on Rebif and you’ll probably live as normal a life as someone with a little arthritis.”
Now, for those who refuse therapy, I think it turns out different, my doctor says she can tell instantly when walking into a gathering of MS patients who is on interferon and who isn’t, mainly by the wheelchairs and walkers.
This is the best site on MS-information .
You gave me the answer to my osteoprosis – problem. I knew it had to be a link to my MS.. Thank you!
I have been diagnosed with MS since Jan. 1999 and have been on every known therapy to slow the disease progression. However, unlike the vast majority of MSers, each therapy eventually put me in the hospital… With the right Neuro and patience, we will overcome this snowflake dis-ease!
As members of this exclusive club, we can be both the greatest asset and the greatest burden for the newly diagnosed.
We can offer so much encouragement, advice, support, and positivity.
We can also be the harbingers of doom, naysayers of sound medical research, and spouts of extremist rhetoric and negativity.
As in all situations in life, perhaps the best way to talk to the newly diagnosed – is to listen. Then, and only after listening, offer your opinion, advice, story and experiences if asked.
Welcome to the club!
It’s odd–we don’t know what to say to new MS sufferers, yet we don’t like what others say to us. Perhaps we could remember that “deer-in-the-headlights” feeling that we get when confronted by a newly-diagnosed sufferer, and use that memory to generate more compassion towards non-sufferers, rather than label them “stupid”. They have no better idea what to say than we do.
When confronted with a newly-diagnosed sufferer we could see ourselves in the role of caregiver or minister. We could consider asking the other person how they feel; or we could consider simply being with that person in silence for a moment, witnessing that person’s suffering, rather than being in a hurry to say something that can never be unsaid.
When confronted with a non-sufferer, we could proactively educate that person; instead of saying “I have MS” and allowing their ignorance a chance to act, we could take just a few more seconds and explain that we suffer from an unpredictable, progressive neurological disease before naming it.
I’ve found it very important to think of myself as an MS “sufferer”: facing it head on, taking ownership of it, is indispensable to healing. Also, it doesn’t hurt for non-sufferers to be reminded that even though it’s not cancer, and it’s probably not fatal, it’s still devastating.
I was diagnosed with MS in 2000. Since then I have lost a husband (from a car accident) and seen many people I love suffer, some die from cancer. Also a in-law family person died from ALS. I feel real lousy about 70% of the time. But I always think things could be worst. You have to put your stuff into perspective. I would tell someone that was diagnosed with MS to wait and see how it goes. A positive out look can go a long way.
People can be so unkind and definitely insensitive. Since being officially diagnosed three years ago, I constantly hear the following:
“But you look SO good”
Makes me want to ask them how bad I looked before.
“You would never know you have a disease”
Try living with optic neuritis, tremor and heat intolerance, then come back and talk to me.
“It could be worse”
Yes, it could be worse, especially if I had to deal with someone like you on a daily basis.
“How do you manage, knowing you might end up in a wheelchair someday”
Makes it easy for me compared to wondering how you manage being so rude and insensitive.
The point is, people are just plain rude. They are also unedcated and uninformed. I’ve learned to be rude right back to them. It embarrasses them and makes them feel like crap, sort of what they were doing to me!
Dana Vigilante, Nutley, NJ
I really love Dana Vigilante’s comments about what to say to newly diagnosed people. Dana was my lifeline when I was newly diagnosed. I called an MS Support Center and asked if they had anyone in my age group (35-40), that I could speak to regarding my new and very scary diagnosis. They put me in touch with Dana Vigilante. She called me that very night, while she was in San Francisco at a speaking engagement. She spent two hours talking me off of my emotional ledge. I think more people need to use a support group from the very beginning. Speaking to another person with this disease will better help you prepare what to say to other people, including co-workers, family and others. Dana Vigilante ws detrimental in helping me cope. She also gave me her personal phone number which I have used on several occasions. She has basically become my MS Lifeline. We have since become very good friends and I strongly recommend all newly diagnosed patients to reach out to their nearest MS group/office and ask them to put you in touch with someone else who has the disease.
OMG!!! I just came onto this site and saw the post by Dana Vigilante and another after that. Dana is truly a lifeline to me as well. I was diagnosed in 2008 and moved from PA to Nutley this past December. The MS Society gave me Dana’s Vigilante’s number and I called her that day. I wasn’t sure what to expect. I’m 38 and I was looking for someone relatively young and definitely hip. I absolutely love her. The thing about Dana is this – she takes away everything that you think a person with MS should look like and she makes dealing with this disease a whole lot easier. MS hasn’t put the brakes on her life. She’s an extremely funny, successful woman. She’s 42 and although she, at times, has visual problems, travels extensively, works full-time and owns a baking business in NYC! She had my husband and i to her home for dinner when we first moved here and it was such a nice night. She lives in a home that one can only describe as “comfortable”. She made us feel so at home. She is an extraordinary host/chef and her home is absolutely beautiful. She also drives a little red convertible. taking away any fears of what a person with MS looks like. At least, she did for me. She is honest about the scary things the happen with the disease, but she also has an incredibly supportive boyfriend, whom we also met, that totally adores her. It helps to have someone in your life who is going to be there through the good and bad. My husband is my hero. We both felt “not so alone” in a new state, with a scary illness once we met Dana. I strongly suggest anyone newly diagnosed contact the MS Society and ask for Dana’s contact info.
Can anyone provide me with Dana Vigilante’s phone number, or the MS Center that can provide it? Thank you!
I don’t want to leave her personal cell number on this site, but you can get in touch with her by email dvigilante1@optimum.net
I told her would you be getting in touch
She was just in Carmel, CA for afew days, but she is home now and you can definitely reach out to her (P/S: Even when she’s away, she has her blackberry and cell with her, and she will definitely take the time to talk you off of any emotional ledg eyou might be on. Dana is an ansolute lifesaver. You are going to love her 
Good luck!
Cat
From a husband’s point of view….My wife wrote the above post afew months ago. And I wanted to add my own thoughts – Saying that Dana Vigilante is a lifesaver would be an understatement. When my wife was diagnosed, we were both scared out of our minds. My first thought was – she’s going to die or end up in a wheelchair. Honestly, when we got in touch with Dana and she invited us to her home, it was like someone turned the lights back on for both of us. Cat was going through such a horrible time both physically and emotionally, and I was at my wits end for not being able to do anything for her. Dana is probably the kindest, warmest and genuine person I have ever come in contact with. When my wife and I were lucky enough to spend the night visiting with her and her boyfriend, Matt, we walked away feeling as if everything was definitely going to be alright. Dana did for us what no so-called “MS Specialists” had the compassion or time to do, which is just tell us that altough this disease sucks, everything is going to be alright. In addition, Dana is absolutely hysterical. She sees the humor in everything and its true that having someone through this whole thing is important. Her boyfriend completely adores her and he was such a great person to talk things over with on a “guy level”. If you’ve been diagnosed, please don’t freak out. I know that its easier said then done. But don’t, just get in touch with Dana Vigilante. She will definitely walk you through it.
The MS Society told me that Dana Vigilante is going to be starting a Women’s only Support Group this coming Fall. I cannot wait!! You can leave your number with them and they will let Dana know that you want to attend. The woman said it is going to be monthly. But no, it won’t be at Dana’s house (someone here said it was beautiful and comfortable and it made me want to hope it was going to be there, lol), because she has too many stairs for some women to go up. I think that based on what people here said, this will be a nice group.
I would love to attend her group. Someone else told me about her as well. She sounds like a great source of encouragement.
I love talking to Dana Vigilante! I got her number two years ago from someone who attends the MS Support Group that she (at the time) belonged to in Nutley. Dana is now an executive pastry chef at a 5 star restaurant. She left the hospice field because she was burnt. Her boyfriend is a great guy. My husband spent time talking with him when I first met Dana. And yes, we’ve been to her home as well, (and yes, it is more beautiful than you can imagine). But as stated here, she is incredibly down to earth and hysterically goofy (in a great way). She just goes on with her life in spite of having MS. Her boyfriend is a special crime investigator, about 6′5 and the most intimidating guy you’ve probably ever seen, but he is Dana’s biggest fan, (and a complete teddy bear), which is so important when dealing with an illness. He is just as funny and good-hearted as Dana is. They are very active in their church, as well as volunteering for the homeless. Not too many young couples do these things today. Dana is so reachable. She has been available for me so often, I’ve lost count. She’s even come to get MRI’s and sat in the room with me!!! She is definitely an angel. Don’t feel uncomfortable reaching out to her. After five minutes, you’ll feel like you’ve found a new best friend!! If you get invited to her home for dinner, you are extremely lucky, she is a phenomenal cook. My husband is still talking about it!
Love, Love, Love Dana Vigilante!!! I met her at the Nutley MS Support group last year as well. I didn’t even want to go to the support group. I’d just been diagnosed, because I had gone to the doctor for migranes. I didn’t even want to think about what people with MS looked like. My husband dragged me to my first meeting. Oh Lord!!! Dana Vigilante is a glamour girl to the extreme. She looks like a model, not someone who has MS! Picture this – sh’es about 5-9, really, short, dark, cropped hair (completely gorgeous), gorgeous smile, great make-up, Christian Louboutin 5′ heels, a $2500.00 Marc Jacobs bag, a red convertible and a sense of humor you wouldn’t believe. THe Face of MS????? Take a look at her. I fell in love the second I met her. And Matt??? My goodness, that boy adores her to pieces. And the size of him? My hubby said he wouldn’t want to walk down a dark alley and encounter him, but he is a sweetheart and just a great person, as well. So don’t be afraid of being diagnosed! Meeting Dana was awesome. I just love her.
Dana Vigilante is an incredibly kind, lovely and funny person. She is a positive face of MS. If you saw her, you would never know she has MS. I love speaking with her, and I also heard her speak at a forum in San Francisco last year, which was incredibly inspiring. My husband has reached out to her boyfriend Matthew, for some information, and we both love him, as well. People say that Matt is huge and a bit intimidating, but he is an actual teddy bear. Yes, he’s about 6′5, but he is an undercover agent as well as an Ironman competitor, too. He is a great person to speak to, as he was just starting to date Dana when she told him she had MS, and that was 7 years ago, and he is still with her (and it is true, he completely adores her)! But who wouldn’t. I loved hearing her speak in SF. I hope she speaks someplace in NJ soon!!!!!!
I love Dana! I’ve been to the yoga class she attends and I am just wondering – does anyone know what perfume she wears? I know it is a stupid question, but she smells great.
You’re too funny, but I know what you mean by asking what perfume she wears. I only found out because I asked her. She smells incredible. She told me she wears Scent of Peace, by Bond no. 9, as well as Necterine Blossom and Honey, by Jo Malone. I asked my husband for the Scent of Peace for Christmas and he almost died when he found out the small bottle is $210.00!!!!! He got me the Jo Malone, which was 120.00. Both are at Saks, but be prepared to spend. I love Dana Vigilante, she is just an incredibly “good’ person and a great support to those of us who have MS.
Dana is starting the support group in October. I called the MS Center and they had her call me. Her and Matt are leaving for Italy for three weeks and will be back in the middle of September. She was really nice over the phone. One of the nurses at St. Barnabas gave me her info. I’m looking forward to meeting her, she sounds like a really nice person.
I’m going to join Dana’s group as well. My sister met her afew months ago at a “Class-Act Italian American Women” dinner. Thats’ a group that Dana started last year. Its for successful Italian women who have class! My sister is a physician in NYC and she joined and loves Dana. Dana was telling her about her MS, and my sister told her that I have MS, so that’s how we started talking. I really like Dana. Besides being such a great person, she is also way beyond intelligent. She did just leave for Italy, but I know she’ll be calling everyone about the October meeting when she gets back. Oh yeah, my sister ordered a cake from her and had to go to her home to pick it up and she said her home is beyond gorgeous. She said everything is white and calm. Would love to see it! Love her!!!!!!
Dana Vigilante spoke at a Women’s Entrepenurial Expo last year in California. I loved her. Her story is awesome. She was in the medical sales field forever, then when she turned 40, she went back to school to become a pastry chef. She left a six figure job to start her own cake business. A corporate baking company bought it from her seven months later after one of the CEO’s had her desserts at a gallery showing in Soho. All while she had MS!!! She has MS but you would never know it, as someone else said here – she is a glamour girl to the max. I loved meeting her because she made me feel alot better about my own diagnosis. When she’s up on stage talking, it can be a little intimidating because she’s absolutely gorgeous. She is a great dresser, and very, very smart. But then when she sits down and talks to you, you realize she is completely nice. She is also very funny in a Cameron Diaz way. Her boyfriend Matt was with her and he is just as nice as she. And Dana isn’t a size 2, which I loved even more!!!! She gives hope to all of us about our disease, and about the possibility of landing a completely hot guy!! I think she is going to be speaking someplace on the West coast this fall. Someone said she is, but I’m not sure. But I do love her and I loved meeting with her. She’s a great face of MS.
My husband and I also had the pleasure of meeting both Dana Vigilante and her Matthew at a fundraiser in NY last month. I was diagnosed 6 months ago at 40, which was a total blow to my entire family as well as myself. Meeting Dana was such a great experience. She is completely unaware of her ability to draw people to her. She is on top of all of the latest MS treatments and trials. She obviously takes exceptionally great care of herself, as she looks stunning. She had on a gorgeous sapphire silk dress that was one shoulder. And yes, she’s not a size 2. She’s “plus-size” which makes her even more gorgeous. (My husband jokingly asked me why I don’t wear dresses like hers. I told him if he looked like Matt, I would wear a dress as a gorgeous as Dana’s)! lol. She and Matthew were probably the most popular guests here, as everyone was drawn to her. She is just “nice”. She’s not a snob, she’s not rude or stuck-up. She’s just a really exceptionally nice woman. Matthew is just as nice. And when he speaks about her, you can tell that he is absolutely over the moon about her. We absolutely loved spending time with the two of them, as I felt alot better about my own diagnosis after seeing that Dana has a full life, and apparently is very successful at keeping her symptoms at bay. And yes, she does smell great!! And I love her haircut!!! I’ve been dying to cut mine all off, I think she gave me the inspiration to do so. I still have my 80″s hair!! She made me want to go home and give myself a total make-over, lol. She is incredibly chic and classy. We just really loved spending time with them. We live in Rockland County, but I would make the ride to see her or join her support group. She’s just a really positive person and when you spend enough time with her, it kind of rubs off on you! She is always smiling too, which is really nice. She just makes you feel better about yourself. And thats honestly what most of us need the most!!!
I have a great memory of Dana and Matt. It was three years ago at the 3 day breast cancer walk in San Francisco. Dana flew out to be on our team. The day of the finish it was freezing, pouring and just a miserable day, but Dana kept us all going with her incredibly upbeat personality. Matt was (supposedly) in Virginia for work, but Dana wasn’t disappointed in the least. As we made out way to the finish line, there was Matt, with a dozen roses, a blanket and a cup of hot cocoa, waiting for the light of his life to cross the line. He had taken the red-eye out, just to meet Dana as she crossed the finish line. These are two truly wonderful people.
Lovely Dana Vigilante is just a sweetie and an advocate for those of us who have this sucky disease. I met her in San Francisco as well and just fell in love with everything about her. I love her outlook and her attitude toward MS. Her attitude is infectious, to say the least. You can’t walk away from meeting her and NOT feel better about anything that’s going on in your life. She is truly a wonderful person. We had breakfast the morning that she spoke at the convention. It was nice to spend time alone with her, speaking about my fears about MS. She just knows what to say, and she’s been through every scary symptom that I was telling her about (I’m glad to know I’m not the only one who gets a tremor or twitches). She told me to take magnesium for the twitches and it has worked wonderfully. I really loved speaking with her and I’m glad I got the opportunity to. She should write a book about MS! When I was first diagnosed, I went to Barnes & Noble and the books on MS were horrible (all from London, most outdated). No one has written a book about being able to live a ful life with MS. Dana would be the perfect person to do it. I didn’t get to meet Matt, but I heard an awful lot of great things about him at the convention. I also saw him, but I didn’t want to introduce myself, as he was speaking with a group of people. I can see why he is in love with Dana. Who isn’t???
Dana Vigilante is absolutely lovely. And what an advocate this woman has turned out to be. She is the type of person that you want with you when you go for tests, get results, etc… She is an enormous source of humor, encouragement and strength at difficult times. I have always adored her, as has my husband. We even had her and Matthew to dinner when they were out here not too long ago. Dana said something that had an enormous impact on the entire group she spoke to here in San Francisco last year – “You don’t get MS until you GET MS”, and boy is that the truth. But she is just a really great source to talk to. Can we clone her so that we can have her out here in SF as well??
I went to dana vigilantes house last month for a small ms group that she had. omg!!! her home is sooooo sweet!!!!! but i can understand why she can’t have all meetings here. she lives in nutley, in a brand-new, just built eco-green building, so there isn’t an elevator (what do these things go for each, about a million bucks)?. it’s only a two story building, but there are alot of stairs. and she lives on the top floor in the corner unit which just reminded me of being in soho or someplace like that. there’s lots of huge windows and light and her entire home is white. and calm, and just so peaceful. i’d like to go on vacation there!! sh’es got a fantastic roof deck and we all sat up there and it was so nice. such a nice night and nice thing that she did for us all. and dana is just a peach. good gosh, i love her. she is such a great friend to have. and she is so nice. she’s always there when you need her. and lord knows, i’ve needed her assurance over the months. she just has this calm assurance and faith that is infectious. i just think she’s great. alas, matty wasn’t there, he was on assignment someplace. we missed him!
Dana Vigilante is such a sweetie. When I was diagnosed the MS Center at St. Barnabas gave me her phone number and she was available to chat with me even though she and Matt were at a dinner someplace. She was just so nice on the phone and she answered all of my scary questions. She called me the next day and we met for lunch and went over my plan of care and my therapy options. She’s definitely on top of her game. And ya knowwhat? Meeting her made my diagnosis alot easier because you would never know she has MS. She is really nice and beautiful inside and out. Sh’es just got a really great personality. i met matt too. He stopped by our lunch because Dana had forgotten her blackberry and he dropped it off. OKAY~~That man is gorgeous! And he is so nice! Dana is completely lucky and so is he. Dana and me are going to be meeting again after I start my Copaxone. Yuch ! I really liked her alot.
Casey – Nice to see your post here!!! I agree! I was at the MS group at dana vigilante’s house on the 11th. I am fortunate enough to be able to climb stairs. there were about 10 others here as well and someone suggested to dana that she have the ms yoga class at her home,a s she has that entire huge living room area with the bamboo floor/radiant heat . that would be the perfect place to hold the class for at least 12 people. and the perfect environment. i agree, her home is very zen-like and peaceful. i think it’s not only that the home itself is gorgeous, but dana has a definite flair for interior design. i couldn’t believe it when she told me she did all of the designing. i hope she moves forward with having the yoga class. i like meeting with her. i always forget i have ms when i’m with her.
Dana held at yoga class at her house last week and I went to it. It was great and her place is the perfect space for it. The yoga instructor was really great too. It was “gentle” yoga, which is great for MS patients. I really enjoyed it. There were about 16 people there and afterward, we all sat around chatting for afew hours. Her home has definitely got great space and great energy. Very zen like and peaceful. I love her bathroom, lol!!! it was really nice of her to open her home for all of us.
Dana Vigilante is such a lifeline!!! i also got her name when I was diagnosed. And she met me the next morning. This woman is a complete bombshell! She went over all of her symptoms with me and I just adore her as well as everyone else here does. SHe defiitely has symptoms but you can’t see them. I felt so much better after I met her because she really relaxed me. She’s been a great friend for the past two years and she came to my wedding this past May, where I got to meet Matt (who seems to have his own little fan club here as well). He is a great dude and together, they are both such a nice couple. very attractive together and completely in love with each other. She’s a good person to talk to about MS. Love you, Miss Dana!!!!!
I’d never met Dana Vigilante before this past Christmas Eve. I just did a google of her and this site came up. She is so nice! I started dating someone over the summer. He and Dana are very good friends, but I had never met her. We had dinner with my family on Xmas Eve, but my boyfriend wanted to go to Dana’s for coffee and to visit her, so we did. I’m Irish, and have never been around alot of Itlalians before for a holiday, but I just loved meeting her. When we got to her house, she had about 40 people there. Italians love to eat, lol. She was so warm and nice to me, because I felt a little out of place, but I fell in love with her and her family! I want to be a part of this clan
They had a ton of food still out and about 10 desserts. Everyone was talking at once, laughing, making tons of noise. I loved being with them. My boyfriend was always talking about ‘dana, this’ or dana, that, and now I can see why. Even after dessert was over around 1am, Dana bought the food out again in case anyone was hungry. And the men ate again!! I loved being around all of them and I can’t tell that Dana has MS. And Matt was there. I had seen pictures of him, but he is nothing like his pic. He looks like Sam Elliot in the movie Mask. He has a biker look (and build) to him. He has long hair, very, very good looking. And very, very funny. THey get along great. They keep laughing all the time. When we were leaving to go home, I had to go into Dana’s room where our coats were. SHe has the hugest bed I ever saw! And her bedroom and her whole house is so pretty. I liked her alot and now I can see why my boyfriend is always talking about her. She is a very nice person and she and her whole family made me feel right at home.
I know the Vigilante family for over 30 years. THey are, without a doubt, some of the best people in the world. The kindness and generosity and willingness to just “give back” make them incredibly kind people. Mr. Vig was great, too. Taken away entirely too soon.
My husband and I were on a three week Italy trip this past summer and Matthew and Dana were on the trip as well. My husband has MS as well and although not really handicapped, required a little help getting on and off our tour bus, up stairs, etc… Matt was so gracious and nice to us. He helped us whenever my husband needed it. He and Dana are really such a nice couple. And they absolutely love being with each other. As all of us were exhausted by the end of dinner each night (which usually ended around midnight), Dana and Matt would be sitting at an outdoor cafe, or fountain for another two or three hours, on their own, just talking and laughing. We had our 15 year old daughter with us on the trip and by the end of it, she said she wanted to be just like Dana Vigilante when she grows up. They really are such lovely people.
I know Dana and Matt and they are really genuine people. But one thing to clarify, Matt is not an undercover investigator. He is on the F.B.I HRT (Hostage Rescue Team). I know this because he does Fast-Rope training with my husband every quarter. He is to be commended. He’s a great man and Dana is an incredibly great person. She is an outstanding advocate and friend to those afflicted with MS (my sister).
Ohhhhh…….I love, love, love this woman!!! dana vigilante is such a doll! I was diagnosed this past summer and given her contact number by dr. f at the ms center. She is just a really calming person and really informative about therapies, symptom management, etc… When I called her she was at the gilroy garlic festival out in california but she called me later that night and talked to me for over an hour. we met afew weeks later when she came home and i just adore her. i LOVE that haircut as well. She came with me to my first appointment when i had to go over therapies. i’m now on avanex and it is a piece of cake. the side effects have been, thankfully, very minimal. dana has become my new best friend.
Gail S., 44
Cresskill, NJ
Dana Vigilante (”Vigi”), is the bomb! I’m not sure how she knew it, but she was so far ahead of the information on the MS Pill, about two years before anyone knew it was in the works. She could’ve led the course on it. Now its finally out and I am taking it, although I started through a clinical trial. This woman is absolutely the most knowledgable person that I know. She can tell you anything that you need to know about MS, and it is obvious that she’s the kind of person who can make calls to make things happen. I love hearing her speak and I love that she is so good to people and really takes the time to help us during our sucky times.
I heard Dana Vigilante speak at an MS Educational conference in Connecticut last week. This woman really is pretty incredible. I’m not sure what else to say. I was diagnosed last month and my mother and husband dragged me to this, but I snapped out of my pity-party after I met Ms. Vigilante, when she was done speaking. She has MS, but she is definitely such a healthy, normal looking person. I think alot of it has to do with her attitude and her outlook. She’s a really positive person and she just imparts that when she speaks. There were several other speakers there as well, but Ms. Vigilante really was the best, and I think it’s because it is easy to relate to her. She has the best smile I’ve ever seen and she is just so nice. She took alot of time to chat with people after the meeting, and her boyfriend Matt was there and he was so patient and kind and he met with all of us too. He obviously really loves Dana, as he goes to all of the speaking engagements and totally supports her. When she was on stage speaking, when she was through, a huge picture of her and Matt came up on a screen behind her, and she thanked him. He is definitely intimidatingly huge, but he is a very, very nice person. Meeting Dana changed my entire outlook of MS in a positive way. I’m over the pity and ready to take on whatever comes my way. Thank you, Dana V.
Sharon T, 33
Darien, CT
I think that the thing about Dana Vigilante is that meeting her really gives an unsurmountable assurance. This is a woman who was diagnosed, yet still lives a completely full and exciting life. Now, I’m not saying she has NO symptoms, because she has told me that she does. But she makes living with this disease alot easier. Her outlook is excellent, at all times (I have never seen her upset), and her abilility to be one of the kindest people I’ve ever met is so incredible. She does have an excellent support system, with her wonderful partner of several years, Matt. And that is extremely important as well. I do agree that Dana is an exceptionally great FACE OF MS
Can’t believe the awesome following dana vigilante has, and rightfully so! love her to bits!!! also heard her speak last year and again this past winter in san fran and she hits the nail on the head on so many levels of ms. and she’s just a regular person when you sit down to talk with her (okay, albeit an extremely gorgeous, intelligent, successful regular person, lol), but she is also someone who does alot of volunteer work and helps others out, including the homeless and other organizations, so she is definitley not a snob or stuck-up. she’s just a wonderful person. my husband and matt met at the convention too. yeah, matt’s a pretty huge guy, but also very nice and down to earth too. i thought he was the security at the forum, lol. my husband is over six ft and matt towered over him. wouldnt want him on our bad side, lol. he is very low key, just stands to the side and gives dana the opprtunity to meet everyone. you can tell that he absolutely loves her. i love hearing her speak about ms.
dana vigilante reminds me of kim kardasian (face), halle barry (hair), but also of demi moore in the movie “ghost”. i really love hearing her speak about ms.
cynthia rudim
Please stop using this site to post stupid nonsense about Dana Vigilante. It’s for REAL patients.
As someone who has posted regarding Dana on this site, I apologize to you, KEC. We’ve all been able to benefit from her. Sorry to have caused you so much anger!
Joanne –
No need for you to apologize! This site is well monitored by a moderator and if he/she thought any of the content was inappropriate it would have been deleted by now!!! No one has the right to tell us not to discuss someone who has been so vital to all of us “REAL” patients during our diagnosis!!!!! If we want to discuss Dana Vigilante, we will! She’s our little superhero!! If no one else is interested in hearing about what we have to say, then they can go to another MS blog.
KEC……. As a REAL PATIENT, I can tell you…. Dana Vigilante literally saved my life when I was diagnosed with Multiple Sclerosis. If you have any doubt of that, please feel free to contact myself, my husband or any of my four children for confirmation.
Lori
Amen to that!!! Dana’s an awesome person! I live in Westchester and got her name from a friend who lives in NJ. She’s going to be speaking at our MS Group next week. She’s a really great person to get in touch with to discuss ANY part of MS.
I am in agreement as well!!! I think the most important thing in getting diagnosed with MS (or any other disease), is having someone who actually has the disease, to talk to. My doctor could’ve talked to me until he (or I), was blue in the face, but it didn’t matter because he had no idea what I was going through. The staff at St. Barnabas put me in touch with Dana and as someone else said here, it was like the sun came back out for me. And it was important for me to see someone who was active and happy, even though she has MS. I think online forums are an excellent way for all of us REAL PATIENTS to communicate and share our experiences. And I think everyone should know that excellent advocates, like Dana Vigilante are out there. Online forums are not for everyone, so if you aren’t comfortable in this particular forum – find another.
Good thoughts, Greely! Ditto your comments! I love the fact that we A) Have this forum to talk about things, and B) Have Dana Vigilante to get us through the sucky things. I had footdrop for the past six weeks and was confined to pretty much staying in for the whole time. Dana checked in with me weekly and even made dinner for me and my family and sent it over with Matt (who my kids have fallen in love with after he spent an hour shooting hoops with them in the rain). Okay ladies….. Little Miss Vigi is an incredibly great cook as well as everything else! She’s having yoga at her house again starting next Monday, but with my foot just coming back around, I don’t think I can make the stairs . I’m going to miss it! Keep the faith ladies,
No yoga class this week at danas’ because she is has a really bad cold. I spoke to her last night and she sounded awful. She said she was planning on getting back on track with the classes starting next Wednesday. Can’t wait to see her again, she’s like chicken soup – good for the soul!
Good to see you in here, Greel!
Meghan
no yoga yet
but, its because dana and matt have headed down to mississippi to volunteer with the floods and the people in trouble. thats our girl!!!! always doing good. i was talking to grigg the other night and he filled me in and told me to let everyone know that they’ll be down there for about another two weeks, but classes will definitley resume as soon as she gets back.
I was diagnosed with ms six weeks ago. Exactly fiv eweeks and six days ago, i had the best pleasure of meeting with dana vigilante. all of the posts here are on the money, and then some. i absolutely would be a complete train wreck if i hadn’t reached out to her. she is an incredibly inspiring source of knowledge and support. she made the time to really listen to what i was so afraid of, and she didn’t laugh, she just really reassured me that things would be okay. ive had myoclonus for the past two weeks and it freaked me and my husband out, but after hearing dana’s story about when she had it, i feel so much more relaxed at night, and i think that has actually slowed the myoclonus down a bit. dana should be commended for all she has done. this blog is a definite tribute to her and so well-deserved.
thank you, dana – i love you!
Jess, 31, Oak Ridge, NJ
Dana Vigilante met me at the MRI center the morning I was having THREE, yes THREE (thoracic, brain, spine) MRI’s, with and without dye afew weeks ago. It took over fours hours (just being in the tunnel). Dana sat with me the entire time. She talked me throughout the entire thing. It was a trying experience, to say the least, as I had never been in the tunnel before, nevermind for almost four hours. Dana is a blessing. Nice, funny, smart, and the equivalant of Valium.
Dana is just so “sparkly” and shiny
Everything about her is shiny, lol. Her smile, her eyes. And she is always smiling and reassuring. She just adds this calmness. She is very calming, very reassuring and very educated as to all of the tests.
When I was all done, the techs were saying that they wish she could go into the room with every patient and walk them through their MRI’s.
The patients like myself, that are fortunate to have someone like Dana are truly fortunate. Advocates should be mandatory for ALL patients with any type of illness. It is an absolute miracle that I was blessed with my advocate.
And the best part…after the hectic day we had, Dana and I went out for dinner. She drove her little sportscar, with the roof down. Loved being with her and forgetting my problems during dinner. And people are right…she just has such a positive attitude that she actually draws really nice people to her.
As Humphrey Bogart once said….I think this is the beginnning of a beautiful friendship”
i live in northerm nj and was wondering if anyone could give me any input on either st barnabas or holy name’s ms ctr. i am undecided of which one to make an appointmnet at. thank you for any suggestions.
Thanks for the update on Dana, Loris. Her cell has been going to voicemail for the past two weeks, but I just got an update myself from Twitter. Dana and Matt were down in tornado town helping out and were headed back to jersey when they heard about the disaster in joplin, so they are there volunteering. lets wish them both a safe journey and prayers. they are such great people.
I live in northern nj and i was wondering if anyone could tell me if there is a better ms facility to go to? right now i am between making an appt at st barnabas or at holy name. any suggestions?
Dana’s the best when it comes to figuring out what the best treatment option is. My physician was in such a rush to get me on Copaxone after he diagosed me (I guess the rep for this drug gave the best lunches). Before I filled the prescription, I had looked it up on the internet and knew it was not for me. I told him so and he seemed annoyed and in too much of a rush to talk about other meds. I met with dana afew nights later (I was referred to her by a friend in NYC who has a husband with MS), and she explained the pro’s and con’s of ALL of the therapies out there and I decided to go with Avonex. A decision I DO NOT regret. It’s amazing that Dana took the time to do what my physician apparently was too busy to do – EDUCATE ME ON MY CHOICES! I would strongly agree that Dana is an exceptional person. Very kind and extremely compassionate. I am not surprised to learn that she is in Joplin helping out. God will definitely watch over this angel! Please don’t let your physician rush you into a certain therapy for MS. Take your time and hash out all of the therapies, do your research and remember YOU, as the patient need to feel comfortable with the decision – not your physician!
I’m on the fence between Copaxone and Avonax. I told my doctor I wanted to think about it for afew weeks. I’ve had symptoms for so many years, I don’t think afew weeks is going to kill me. It’s hard to weigh all of the pro’s and con’s though. Very confusing
Does anyone know the status of the MS Yoga group schedule., or if, Dana Vigilante is havingone any time at her house again? I haven’t gone to either, but I live in Bergen County and would like to join one. Pam said Dana is in San Francisco until the 19th, but if anyone know’s of anything coming up can you please email me and I will email you back? Thank you.
p/s – I can go upstairs, so if Dana is having one in July or Aug, I would like to go . I heard alot of very nice things about her at our last support group.
Yoga classes are starting soon at different NJ counties throughout NJ through the MS Society. I think they are free, but my husband and I went to one last year, and they were kind of hinting for donations. As far as Danas’ class, she’s definitely having Fall classes in her home again, but not doing any summer. She sent an email, they’re taking some time off and renting a houseboat in Seattle for awhile. She’s definitely resuming classes in Sept. I’ll keep you posted. She’s zapped, and I can’t blame her.
Gree – I ran into Dana last night at the benefit. I haven’t seen her since last yoga class, she looks absolutely amazing! She said yoga classes are starting again at her home on the 15th. She took the summer off to travel, relax, and volunteer. Said she’s really looking forward to starting the group again. Told me that theres going to be one in NYC too. I was so happy to see her, she had lost touch with everyone for afew months but happy she’s back. Have to run, gotta walk the dog before it starts pouring again. p/s – Gree, did you get the board of ed email?
I went to yoga class on Wednesday night at Dana’s. Great crowd and I was so happy to see her again. I hadn’t seen her since the end of Spring, but I did know that she and Matt took alot of time off. I liked the instructor, she was very gentle. I’m gong to continue the classes. I also liked that we all stayed afterward and talked. I really missed Dana over the summer, shes’ really an asset to someone who has MS. But I do know she really needed to take time off, from everything. She’s the ultimate provider for everyone and obviously the glue that holds many of us together. And Lis, your’e right, she does look great (but she always did, to me). She cut off all of her gorgeous hair again! But it looks awesome either way. She really has her symptoms under control. She went completely vegan over the summer, which is how she lost all the weight, she is also doing the whole macrobiotic thing. She told me to get The Kind Life book, by Alician Silverstone, so I just ordered it from Amazon. Dana’s just got some really good balance. I really like being in her home. Its a nice place to have the class, instead of the God-awful gym we used to have it in. Her home is very calm, and I love the floor. Well, I also love the desserts afterward, lol. She deserves lots of love and light. I’ll see you next class if you are coming. Peace!
Loving all of the Dana light going on in this forum!!! Went to her home last night for the guided imagery session. Awesome! Best part is the chatting afterward and the incredible spread she puts out. How does she does it all? Love her home, her energy and her balance as well. Really has a dynamic way of putting forth her light to others, like me, who don’t always feel like smiling She was even sweet enough to burn the imagery CD for all of us. She works, volunteers, and really gives forth. Love that about her. I’m def going to the next yoga class. Gree, get the CD as well as The Kind Life book and any books you can get on macrobiotics. I can tell you that’s why Dana looks so good. She just really turned the tables on her MS. She’s a beautiful soul. Definitely a key asset to my family and me
Dana gave me her copy of The Kind Life. I then went out and got my own copy as well as Gorgeously Green and The Macrobiotic book, all at her recommendation. My life has changed completely. I feel a ton better, lost weight, my skin stopped breaking out and my MS symptoms are so much under control. She also told me about coconut oil, aske her about it, too much to write her. Love her and everything about her. She’s my family and mine anchor. Sweet and nice.
Dana -
You have been an inspiration to many people. Not only with your helping us withMS, but in your volunteer work, your charity, your ability to give love,, strength, guidance, when needed. Your ability to know when someone needs help without them having to ask. You have been a lifesaver, and this is the only way I know how to say thank you, on a day when I have so much to be thankful for. You have literally saved my life. I hope to someday share your love of life, unwavering faith, and amazing ability to always see the glass as half full, the sun through the stormy clouds, and the good in every person who is blessed enough to meet you. You are truly an amazing human being. God has bessed us with you and without you, I would not be here today. You pulled me back from the brink, literally. And for that, I am truly grateful, in a way that i will never be able to repay you for. You are a beacon of lighted hope in the worst of storms. Thank you, Dana Vigilante
Was so bummed when I heard the yoga classes weren’t resuming at Dana’s until Spring!! We hadn’t even seen her or heard from her but just ran into her Wednesday at the library annual book sale donation day. She looks great, as usual and she is definitely resuming the classes this coming month (whoop-hooo)! She’s also going to be renting space someplace because she said the classes are getting too big. She may even start having them in the park if weather, and town allow. She is going to e sending out an email when she knows for sure. It was really nice seeing her. She was traveling a lot last fall and didn’t really have a whole lot of free time. I got to see Matt too, as he was bringing tons of donated books in. Definitely nice to see her again! Now let’s bring on the classes, lol!
I’m glad to hear Dana is doing well, as I hadn’t seen or heard from her in over a year, but did know she was doing a lot of volunteering and going into a new venture. I’m excited about her yoga class. I attended two last year, I. Not really well enough to be doing it, but it was nice being in the company of so many nice women and to be honest, who doesn’t love the desserts and chat afterward? Lol. Dana is a nice person to talk to. I was diagnosed three years ago at 21 so it was Avery hard time for me. I don’t think Dana is ever in a bad mood, lol. I love her house. She’s really smart on al, of the therapies too. Lily, Vernon, NJ