Went to MS luncheon, speaker, Wendy Booker

[jujuminx]

I went to one of those luncheons that TEVA/SS sponsors at a local mexican restaurant today.  There were probably about 50 of us there with various states of  MS progression. Maybe 4-5 people in wheelchairs, 3-4 in walkers, 5-6 with canes and the rest of us walked unassisted.

One of the first things I was asked by the other guests when I sat down at one of four tables was when was I dx and what if any dmd's was I on?  One lady said, "Oh, you are recently dx, that explains why you are still so perky."  Yikes, I thought maybe I had made a mistake coming.  But once the speaker, Wendy Booker (a woman who was dx with rrms about 14 yrs ago when she was in her mid 40's) started, I felt a lot better.

Just a few of the things that struck me was that she said you have to pick your neurologist like you pick your spouse. You have to love them and it is a relationship that hopefully will last a lifetime.  If you can't talk or ask them anything, find someone else!

She also said we have to have a passion about something to keep us going through this chonic illness journey. The first year is hell she said, a pity party of sorts for many who are adjusting to letting go of their past and looking at a uncertain future. This phase, she says makes many people immobile and often gets them in a "I can't" mentality.  She went through this after her dx but since then has taken up mountain climbing and has run a marathon. You can read about her story on the MS society web site and she also has a web page that is her name .net

She was incredibly inspiring and discussed how MS effects everyone differently and although she looks great and can obviously move her body well, she still suffers from all the usual MS sx, like ON, numbness, chronic fatigue, frequent falling, limb weakness, etc. She wants all of us to keep moving no matter how MS is effecting us.

It was the right message for me at the right time. It reaffirmed some of what I am doing and was reassuring that some of my feelings this first year after dx are completely normal. ABC apparently filmed her journey to the top of mount Everest and she was on a late night talk show recently (sorry, can't remember the name) telling her story.

Just thought I would share, hope you all are doing well.

Julie

[jujuminx]

Yes, Wendy said now that she has visited the North Pole, her next goal is to go to the South Pole.

I totally agree w all you said Lulu.  Pick a goal, whatever it is, the metaphorical Everest and push to get there.

Julie

[Lulu54]

We know that for almost all of us the MS doesn't stop - it may be slowed, especially with the use of drug therapies, but it doesn't stop.  We also know that we can only know if someone has benign MS once  we reach the autopsy table.

I am one of the biggest proponents of picking goals - the metaphorical Everest - and pushing as hard as you can to get there.  Unfortunately all too often we run out of motivation, inspiration and especially the financial means to pursue them. Wendy Booker is fortunate that she ran out of none of these before making her final goal.   Did she happen to mention what her next goal will be?

Ultimately we can waste a lot of time worrying about where this MiSerable disease will take us, or we can get on with living and keep climbing.

best,
Lulu

[johnniebear]

She is a great speaker-  you can watch some of her video's  she has on Youtube.


thanks

Johnniebear

[HVAC]

I hate that concept if you are still up and going you have "Benign MS". I have had MS for 46 years. I have permanent double vision, vertigo,left side weakness, hearing deficit, and cognitive issues. For most of my life I knew I had something wrong with my brain but since nothing could be done about it I was pushed to solider on. I have worked construction climbing three story ladders and having to carry what a man could for 12 or more hours a day.

My MS it getting worse in the last few years and since I have a Progressive form not much can be done. Mine has gotten progressively worse in the last year. I have taken up horse back riding now that I can no longer ride a bike. When I am out with Polly people think I am training her. They are shocked when I tell them no she is my service dog. Now more and more she is my eyes.

My therapist told me an interesting story. She is on a conference call with many Doctors and Therapists who use hypnotherapy and positive suggestion. One practitioner had a patient who after using these techniques had become limber and strong again. The woman went for her MS check up. The MS Specialist looked at her current MRI and said there is no way with this lesion load you are up an moving this well. The next day the woman lost mobility.

I am not a pollyanna. I do believe a positive out look and not giving into this disease goes further than you think. When I was first diagnosed I was totally depressed waiting for everything bad MS symptom to come at once. Then I realized hey I am the same person I was the day before my diagnosis.

I have to adjust. I do not have the stamina I had. I get tired very quickly. I have adopted a positive out look and am going to live every positive moment for all it is worth.

Right now my gut has shut down. I look like I am pregnant and able to eat little. This has been going on for weeks. My vision is bad. I am still out and going. If you met me on the street you would not know I am sick. I have two choices lie around and be miserable or distract myself.

Yes all of us are different with different disease courses. Wendy is saying make the most of what you have. The trick is constantly adapting. That is what life and aging is about. Some people have to adapt sooner than others. There are children whose bodies betray them.

Wendy tells a great story of running the Boston Marathon. She did it with her friend with cancer. Neither knew how hard it would be. Wendy was giving up. A big Irish cop says "Lady I have not been standing here freezing my -ss off all day for you to just give up".

Wendy does have issues with MS. She did do something nearly impossible. With Marathoning, Mountain climbing and MS it is taking it one step at a time and not looking to the end and getting overwhelmed.

I am equally impressed by those with MS I have met who have every limitation imaginable and keep living their lives. Most of us fall somewhere in between and I am impressed by all who do what they need to do on a daily basis.

Alex

[twopack]

Had a nice post going and the puter rebooted itself with no warning.  Grrrrr.  Must be telling me to go to bed.  I'll try to recreate tomorrow.

Glad you got to go and hear what you needed to Julie.  These dinners are a great starting place to learn and meet others sharing the journey.  Some days we need inspiration.  Some days we need hugs.

Mary

[jujuminx]

Wendy said other MS people have said that she must have "benign" MS but she says that she struggles all the time with sx including having a relapse on Mt Everest.

What she said and I have heard from others who have done execeptionally well w their MS is that you HAVE to remain positive and you HAVE to believe that what you are doing to take care of yourself matters and makes a difference.

She opened up her presentation by saying MS today "is not your grandmothers MS of decades ago". She BELIEVES that the copaxone she is on has helped keep her mobile and disability free.

And in spite of the 30 below temps on Mt Everest, she took her shots daily.  The med was always kepted on her body (she had 7 layers on and the med was in the second layer from her body). Her body heat kept it from freezing. Nothing was going to keep her from taking her meds.

Julie

[jujuminx]

lol Alex.  A lot of us here, want to be YOU when we grow up!

As high energy as Wendy was she said one of the hardest things for her to adjust to was that no matter how much she trained for anything, fast and MS just don't go together. She has had to embrace her slower speed. Push your self but know when to let up too.

Hang in there copenoxa, the first year is a bumpy ride but as Wendy said, and as I have learned, this disease will change your life in wonderful ways that you cannot even imagine.

Julie

[Lulu54]

She is certainly a great motivational speaker - Shared Solutions has a large number of them who make these inspirational talks about not giving in to MS.

We've kicked it around here before, that many of these people may well fall into the "benign" category and don't face the progression that most people with active MS will face.  It would be wonderful if we could all be like her and literally climb mountains and run marathons - instead we need to pick our symbolic Everest and don't surrender.

I've also met her early in my travels and had the same reaction, but can't imagine ever dreaming of conquering Everest.  LOL

best, Lulu

[copenoxa]

Thanks for posting--I am newly diagnosed and hadn't heard of her (yet)  Sounds inspiring :)

[HVAC]

I am so glad for your experience. I am glad you were touched by the Great Lady.

I saw her on CBS Sunday morning long before my diagnosis. She was at a luncheon for our local NMSS chapter last year. I walked in and the President of the chapter took me over to meet her. It was like my husband a cyclist meeting Lance Armstrong. She emailed me and I still have it on my fridge. She is my all time hero. She is so funny talking about her adventures. If anyone gets to hear her in person do it.

I am glad she finally finished her quest to climb all the top peaks on every continent. It took her several tries to do Everest. The work she does for the widows and orphans of Sherpas ( the guides) is amazing. The families are outcast as unlucky if a Sherpa is killed. As well as the inner city kids in Boston and how those kids are raising money for the Sherpa families. Like Lance, Wendy effects so many lives she comes in contact with not only those with MS.

I want to be Wendy Booker when I grow up.

Alex