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Do  you LIKE me?

Jul 24, 2012 - 19 comments

Dear forum family,

  MedHelp has given me permission to  post this in my journal and I hope many of you will see this and want to help.

I have submitted an entry to MAYO clinic for their social media workshop – it should be illuminating to see the medical side of this communication tool.  MAYO Clinic is offering scholarships for three patient/caregivers to participate alongside medical personnel in their upcoming Social Media Conference.  It appears I am the only Multiple Sclerosis patient advocate who has applied and I would appreciate your taking a few minutes to support my efforts. They are also weighing comments, so feel free to add a few words there as well, either about my essay or the importance of social media to you.

If you can help., go to this link and select either the LIKE and/or the TWEET on the ESSAY page.  These are located directly below the essay.

Please share this with your contacts, and feel free to post on your FB page, if you have one - I need all the LIKES or TWEETS I can gather.   This part of the process ends on August 3, so please do this immediately if you can.

Thanks, Laura
aka Lulu

Around the World with MS

Jun 14, 2012 - 0 comments

In my dreams this would be  a trip to circumvent the globe but in reality I am talking about Disney World -   You know that place in the sun and heat, where people from all over the world come to entertain themselves with cartoon characters, French fries served with every meal, and a day that is too long for even the most fit and conditioned tourist.

Recently I went around the World with my family, including the young grandchildren.  My husband and I had been at Disney’s Hollywood park last July for one day, using a final day on a multi-day ticket from many years ago.  I have never been so miserable in my life – my MS was really protesting being subjected to the heat and humidity.   I swore if I ever went to the World again, I would find a way to be smarter about navigating the obstacles and heat.

How could I resist going to the Kingdom with the not quite 2, 4 and 7 year olds and experience all the Magic through their eyes?  I did my research and came up with a few tips that made our five days in the various parks of the Disney dynasty bearable, and I offer them to you for your use.

If you are taking an airplane  to Orlando and don’t have a first class ticket (I didn’t win the lottery and was flying coach with the family),  be sure to call the airline and request bulkhead seating because of your disability.  Unless someone with a fused leg (one that can’t bend) comes along and bumps you, you will have a seat with great leg room and able to stretch so any spasms or cramps can hopefully be controlled. There is no extra charge for this seat and is simple to ask for; the same goes with aisle seats.  It seems all the airlines are charging extra for aisle and window seats, but don’t pay that extra amount until you talk to the airline representative and ask for accommodations.  Even for a short flight, having this room makes a difference for my legs.

Take along your handicapped parking placard if you have one; the accessible parking at all of the Disney parks eliminates the need to ride the trams from the parking lot, cutting the amount of time you stand in line in the heat.  That is especially important with the summer heat and standing in line on scorching hot asphalt parking lots.

The first thing you should do at the park once you are inside the turnstiles is arrange your wheelchair or scooter rental.  In true Disney fantasy form, they don’t call these scooters, but Electric Convenience Vehicles (ECV).  I rented a manual wheelchair and it was $12 a day, but they are discounted for additional days, so please be sure to ask and rent for the total number of days you will need and not by the daily rate.  This is a manual wheelchair, so be sure you have a strong person in your party who can push you for the day(s) and maneuver through the crowds.  Our adult daughter took on this task, but if she weren’t there I would have perhaps rented a scooter, which  is significantly more costly.  There are also private companies in Orlando who will deliver a scooter to you, for a fee of course.  A quick look on  Google will give you all the details.   Note: there is only a limited number of chairs and ECVs available through the Mouse’s concessions and on busy days they can run out of rentals.

After you have rented your wheels for the day, the next stop should be the Guest Relations Office.  Just because you have a wheelchair, it doesn’t automatically grant you additional services, special consideration,  or assistance in the World.  A Guest Relations  representative will talk to you about your limitations and create a special Guest Assistance Card particular to your needs.  My card for this trip had different waivers that the Disney cast members were very helpful with; the most important one to me was “provide a shaded wait area if available,” since the temperatures were unseasonably warm and in the low 90’s.  Too bad it didn’t also include “immediate access to any restroom in the park,” but those lines weren’t too long to negotiate.

The next stamps were ‘guests can use an alternate attraction entrance where available” and “guests may enter attractions through the standard wheelchair entrance.” Both of those entrances were at the Fastpass entrances and bypassed all the lines, the heat and the excessive wait times.  Several made entrance into the ride or show easier to navigate as well.

At each stop I was able to show  the  Guest Assistance Card to the Cast Member, which is Disney’s name for all of their park workers,  and my entire group was granted almost immediate access.  This card cut down on the time I spent in the heat and allowed us to have a wonderful time traveling around the World. There were a few rides such as Space Mountain  - roller coaster types have always made me ill  – that I did not want to ride and my youngest granddaughter was too  small to tag along.  The ride attendants allowed the others in my group to use my pass while the youngest and I waited for them to be finished.

Early on our son told me that is was about time something good came of my MS and that this was my own little rainbow.  He also told his girls that I had the golden ticket, like Charlie and the Chocolate factory. Rainbow or golden ticket, it was one powerful piece of paper that made five days in the world manageable.

There is no way I can say enough good things about how the Walt Disney World staff facilitates the traveler who needs a little extra magic to have a great time.  I cannot suggest strongly enough if you are going to travel the World,  to plan ahead for your travel, rentals and special accommodations.  I suspect that many of the other parks across this country have similar programs, but I don’t have personal experience to relay.  Spend a little time with Google and you should be able to find the answers online.  Regardless of your destination and with some forethought, it can be a great adventure. Don’t  let your MS stop you from seeing the World.

Relenting and Renting

Jun 07, 2012 - 8 comments

Never do I want to be constrained to a wheelchair.  Yes, I know, neither do you.  None of us do, but living with Multiple Sclerosis, it is a possibility that isn’t hard to imagine.  I took a trial run at it last week and came away with a renewed appreciation of being ambulatory.  It was vacation week, and I had agreed to go to Orlando and the Mouse World with our son and his family.  The thinking was being late in May, the weather would still be reasonable.  So much for our thinking – there was some flaw in the plan, because Mother Nature cranked up the thermostat and we had temperatures in the 90’s every day.

Heat sensitivity  is a fairly common problem for people with MS, and I am no exception; the warmer my core temperature becomes, the less cooperative are my legs.  Keep me in that  type of  stifling heat Florida was experiencing and I quickly resemble Quasimodo and his walking gait  - step, lean,  drag, shuffle.  Repeat.   The hotter I am, the scarier the MonSter in me looks.  

We planned on five days in the assorted parks and thought we had developed a reasonable game plan.  However we didn’t take into account the unusual early season crowds and did I happen to mention the heat?  The money was already spent for the tickets, the granddaughters were being cooperative and so excited to be in the Kingdom that I had no choice but to forge on.  The answer to getting through the finals days was something I had already thought of but had hoped to avoid –I relented and rented.  A mere $12 a day and anyone can rent a  wheelchair for getting around the parks.  There is even a multi-day discount so I put down my plastic and paid $20 for my own wheels for the final two days of our trip.

Except for an occasional push down a hallway at a hospital, I’ve not been confined to a wheelchair, and especially not in the midst of an excited, hot, sweaty crowd, all juggling for their own spot in line or place on the curb.  My adult children and husband traded off turns pushing, but my daughter did the yeoman’s share of the work and she got the workout with the stop and go, up and down aerobic nature of wheelchair pushing.  The height of the chair handles appear to be made for people who are less than 70 inches in stature.  My family is tall, and each one of them had to stoop slightly to push the handles.  

I’ve joked many times with my husband since my diagnosis with MS that I need to work out more so I can be prepared to haul my own a$s  around in a wheelchair, and I learned that is no longer a joke;  I could barely budge the wheels with my own arm strength. I’ve also talked about the need to lose weight, so it wouldn’t be such a chore for others to wheel me and this trip made the importance of that more evident than ever.   But mainly, just like I am sure everyone with MS desires, it was a good reminder that I want to be in control, and there is no way I can do that when someone else is doing the pushing.  It didn’t take me long to declare to my family that if there is ever a need for a full time chair, it will have to be an electric one that I can propel on my own.  I will make them take responsibility for that choice and blame it on the fact that they are horrible pushers and each one of them clipped more than one person in the heels as we made our way through the crowds despite my warnings that they were too close or too fast or too,  too,  too whatever.  This was from my family who regularly gripe about the seniors in the grocery story hitting into them with their food buggies.  

People who regularly use a wheelchair talk about the view from that height and I can tell you it isn’t pretty.  In a large, sun baked crowd, it is even worse.  I could see eye-to-eye with my 7 year old granddaughter, but the body parts I saw on most everyone else was something you would hope to avoid.  If the sun didn’t bake my eyes, some of the views certainly threatened to blind me. Goodness, do these people not know what they look like below the neck  and especially the belt line?

It was a humbling experience to set aside my pride, take a seat, and be dependent on others to get me through the 10 hour days of amusement. While the others went off to tackle the thrill rides, I sat in my wheelchair, entertaining my 18-month old granddaughter in her stroller and couldn’t help but feel a tad bit sorry for us both that we were left behind, even though I have never been one for dips and spins and turns in an amusement park. But we made the best of it - we had our laughs, danced a bit to the music, and made our own fun.   Like everything else with MS, perspective factors in a major way as to how to deal with the daily differences.  Being in a chair, albeit voluntarily and for a few short days, gave me  new perspective and renewed motivation to not relent to my MS.  

on leaving the nest........

Jan 29, 2012 - 1 comments

Something I wrote to Ojibajo when she stopped through to say to she was moving on ...  I want to capture my response to her for others to understand that there is a constant turnover of people here, but the stories remain much the same.  

When I look at the names here, there are very few of the same people who embraced me and helped me figure out this MiSerable disease back in 2008.  Most of those people have gone on with their lives, in whatever form that might be.

I like to think that our forum is somewhat like a nest and there are so many peeps being hatched.  Then they become fledglings and learn to fly solo, occasionally returning back here to touch base, give us an update or ask a question and then leave again.  Unlike those mama birds, though, we never push anyone out of our nest.  Then there are the few who never leave, staying here for a variety of reasons.

It would be wonderful if everyone stuck around here forever, but it doesn't work that way.  From what I have observed, it takes about a year after dx to get comfortable living with this constant companion, making peace with having a chronic disease, and getting on with living for today instead of worrying about tomorrow.

You've been given the tools -  the knowledge of MS and how to get answers, the encouragement to be your own medical advocate, and the strength to assemble your own personal support system. I know you will use them all wisely as you move on from here.

But please remember to stop through and let us know how you are doing, Ok?