ELLIE'S BLOG on Living Well with MS

The beginning of October my husband and my two sons and I piled into our van with my wheelchair on the lift in the rear of the van.  We headed off to Cape Cod to visit my brother and his wife. Then on Saturday drive into Boston for the Red Sox Yankee game at Fenway Park.  This weekend was definitely better because I was taking  Ampyra .

As this was a big week-end for me I rested well a few days before we left to be in my prime. luckily I also had my monthly low dose sol-u-med a few days before we left. That and Provigil which I use if I'm doing long days. I was raring to go.

Unfortunately we were in the head winds of the remnant of the hurricane and it was horrible driving most of the way down.  Luckily we were able to pack the car it in rain reprieve .

As I don't drive I sat in the back as my husband and son's took turns driving. I worked on the navigation with who ever was in back with me. And as long as I I didn't have to read a small sign I was helpful.  Thanks to Ampyra for my improved walking ability we did not have to get out my wheelchair in the rain when we made our restroom stops. I used my walker and then we found a shortcut where I could use my cane. Now to some people this may not seem like a big deal. But believe me anyone in my situation knows it's a big deal. Taking out a wheelchair or even a walker in the rain means you sit in wet clothes no matter what you are wearing.

After 6 hours we arrived at my brother's and left my wheelchair in the car. I used my walker but left it in the garage to dry off and greeted them and walked with nothing.                                                              I was tired but I wasn't totally exhausted and later we went out to an early supper. Of course it was fresh fish at a restaurant overlooking the harbor. Again as it was a reasonable distance and raining my cane was all I needed. By that time I was past exhaustion so bedtime was early and very welcomed.

Here I am with My brother's wife Ann,my brother Bill and Sean going over directions to get to Fenway Park.

Before we went to the game I popped in my wheelchair and we went down to look the ocean. I love the smell of the ocean and to look out to the horizon as well as its motion of waves. I got out of my chair and walked around on a sidewalk overlooking a shallow section with minnow's and a small sandy shoreline. It brought back my childhood, my children's childhood and I could picture my grandnephew's playing there. These memories are special to me as I spent my first 16 years very happily on the ocean all summer.

Soon it was time to head into Boston and Fenway Park. Again I sat in the back so I didn't have to worry about not be able to read signs as my vision isn't the best and also I didn't tire myself out that way.

Luckily we had a pass for parking close to where the entrance to our seats were.  We have to thank my niece Patty who works for the Red Sox who got us the pass as well as our great seats. I was better and we wanted to take advantage of it yet the decision to try to go to a game  was well into the baseball season.

And here we were! Across the street we looked up and saw the sign I hadn't seen for over 40 years

The Red Sox do a great job for the disabled.  We were in the back row at a great location behind home plate. In the back row only a few seats were removed for the wheelchair dependant. That way my family was able to sit with me. I hate being isolated in a section just for wheelchairs. But I loved being in the back row. I felt like I was  part of it but not enclosed in the normal noisy atmosphere. There was also a handicap bathroom just behind us guarded by security to keep it for handicap only.

To prevent fatigue I had brought my glare resistant glasses and earplugs and I did not go around looking at all the booths before the game. I would have liked to have done that but I knew fatigue would be hanging around the corner if the game was long or too noisy etc.

And here I am with my husband Bill,my niece Patty,me, Sean and Brendan my 2 son's.

We are always told that having social support is so important in handling our MS well. Let me tell you from my personal experience it's everything. Anyway Patty gave my men a tour of the park  while I rested and chatted with her boyfriend Chris who took our picture. .

Well it was a 5 hr. long game including overtime. And I think I did very well with handling that MS fatigue until near the end. I had moved from fatigued to exhausted at the time when everybody started yelling louder and louder.  I put in my ear plugs which helped a bit. But by then I was entering the Zombie Zone.  I could not have told you what the final score was or what happened at the end. It seemed that someone said the Yankees won and and then my family took possession of me. My oldest son walking in front clearing the way and my husband on one side and and my other son on the other. We went down the long ramp to leave Fenway then crossed the street into the parking lot and into our Van.

Was it well worth it? Of course-it was wonderful!  I rested on the way back to the Cape as my family dealt with the traffic leaving Fenway. And thanks to Ampyra I could still walk with my cane after a rest.

The next morning I was really tired (which I try to hide well) and after breakfast and chatting we took a ride around Falmouth in my brothers SUV so we could all be together. I brought my walker. And we stopped at the private beach of my brother's.

There I am going down the steps with Brendan as Ann looks on ,brother Bill watching in front and Sean heading for the ocean.

I really wanted to walk down the beach to the ocean. But I didn't know if the sand was firm and and after years of my legs just stopping and not be able to move or losing it and landing down on the ground I hesitated. Thank goodness my brother went down the steps and walked across showing me that it was firm.  I walked down the steps to the ocean with no assistive device at all and stood mesmerized by the ocean and the memories that it brought back.

Listening to the lapping of the waves my brother showed me the sites on the horizon that I was familiar with in my youth.  And as he was a boater for over 20 years where he would sail to.  I swear if it was 10° warmer I would've taken off my shoes rolled up my pants and walked in the water even if I needed three people to help me stay up or move my legs.

I came back as you can see with my son Brendan grabbing my arm and my  son Sean close by and brother also close by to the side. (It was uphill coming back). My husband was busy taking the pictures

This was the first time I had walked on the beach in maybe 15 years. It was very very special. Again I can't emphasize enough the importance of having special people like family there to share it with.

My brother then drove around and showed us all these wonderful little harbors and interesting areas in Falmouth.  Then we drove down to Woods Hole where we got out and walked around a bit. I did really well with my walker. And until I really was slowing down just kept going.

Then my brother went to get his SUV just in time as I couldn't walk further. We did some more sightseeing on the way back of interesting areas which Falmouth is full of.. We stopped at a flower shop as Ann and I decided we wanted to buy some Montauk Daisies which we saw along the countryside.

When we got back I really crashed and slept for an hour maybe two.  Then got up and had a lovely supper, good conversation and crashed into bed early . We were up and left early the next morning.  It was a nice family visit for me.

The next few days at home I was exhausted and then I went into a small relapse but just for a couple of days. However except for one day I was able to keep walking all day. I gradually have gotten better and now feel almost just like I did before.

Using AMPERA has not cured me or repaired my myelin sheaths. But it has enabled me to do more. I am grateful for every single bit of increased activity with manageable fatigue that I can get.  As FDR said unless a person has had a disability and cannot do something he'll  never be able to appreciate  how you feel if you can find a way to be able to do something you very much want to do. 

Be well and have fun ....                                           ellie