Saturday, June 10, 2017

Grateful

Today is such a big day.  It is my parents' 50th wedding anniversary.  It is also my daughter's dance recital and the first time she has a real dance solo (Scuttle from The Little Mermaid).  So it has been a very hectic week as she is also in a musical theater camp, so I have gone between camp and dance dress rehearsals, work and physical therapy, all as summer hits, the temperature rises, and I find myself in situations where the air conditioning doesn't seem to be working, and my whole body is numb.  And I go on.  But 7 years ago so much was different - this week would not have been possible.  My daughter is 14.  7 years is half of her life.

The big thing is that 7 years ago today I went on steroids for the last time - it was the last time I had an "attack" - when things get drastically worse all of a sudden - walking becomes impossible - energy is gone - standing may or may not happen - a lot of time is spent "connecting" with the floor.

But then I went on Ampyra which works for only about 30% of the people who try it.  And I felt my balance come back.  And my legs felt stronger.  And I began to be able to stand straighter, and walk further.  Then I got Bioness devices for my legs which help me to walk.  Then I could write again.  Other things work better as well.  I started physical therapy.  I went from only being able to walk 50 feet to walking once around the track in an hour.

Things continue to improve.  I now walk around the track in under 13 minutes.  I keep improving to this day.  I have the energy to make it through this week.  My daughter knew me for 7 years getting worse, and for 7 years improving.

I am grateful.  I am grateful someone asked me if I planned on trying Ampyra.  I am grateful for the physician who jumped through several hoops to get me on Ampyra.  I am grateful to my family and friends who have always supported me.  I am grateful to be here today, watching my daughter dance, doing what seemed impossible, and continuing to move forward, on my journey, with God there along the way, through the bad, the good, and the impossible.

Peace.

Thursday, April 20, 2017

Bam

My stomach didn't feel quite right throughout the night as I tried to sleep in a hotel on a work trip this week.  When I awoke to get ready for the day, not feeling quite right, I went to the bathroom, in front of the sink, to stand.  But instead of standing, my feet slid under me and I landed on the floor.  This really was not how I planned to start the day.  And then I had the realization that I had a fever. Fevers with MS mimic having an MS attack, where all of a sudden, a person can't walk.

There I was, on the floor, in a strange state of wondering what exactly I should do next.  Gone was the strength to pull myself up onto my wheelchair (I use a wheelchair on things like trips, for longer distances, etc.).  When I removed the cushion from my wheelchair to make the seat a bit lower, I still wasn't strong enough to pull up onto it.  My cell phone, in case I wanted to call someone to help, was in the next room, seemingly a world away.  Eventually I dragged myself to a lower chair in the bedroom, rested, pulled onto that chair, rested, took Tylenol, and eventually re-started the day, a day which was slower as I struggled with a stomach bug and keeping my fever under control.

What this reminded me was the uncertainty that MS brings.  While a fever caused me to suddenly be unable to move, that is because I have probable MS and cannot tolerate the heat.  MS itself can cause someone to wake up one day and be unable to move, for no reason, out of the blue with no warning.  I have been very fortunate to not have had an MS attack in almost 7 years, to be getting stronger, to be able to stand up each day.  And now I am fine - the fever is gone.  But this was a stark reminder of the unpredictability of MS, and the need for more research toward either a cure or a vaccine.

The good news is that you can help!  I am raising money, as I have done for quite a few years, through the MS Walk which is held May 6.  You can sponsor me by using this link to donate:
http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=28339

And, on this link, you can see a picture of me running in college!

There are also good things that have happened this year in the search to eliminate MS:
- For me, with Ampyra and physical therapy over the past almost 7 years, I walked under 13 minutes one time around the track.  Yes, I am the only person I know timing myself doing laps around the track using a walker! To put this in perspective, I used to only be able to walk 30-50 feet.  After I started taking Ampyra I walked around the track in an hour.  Gradually I got faster - 40 min, then 30, then 25, then 20, then I wondered if I could walk it in under  15 minutes, and I did.  And now I have walked it in under 13 minutes. 
- At physical therapy I am now walking 2.1mph for 16 minutes in a row.  To put this in perspective, I started 3 years ago walking .5mph for 5 minutes.  Zoom!
- This year I started to be able to color using pencils.  Seems simple. Before Ampyra, I had trouble writing at all.

- The first therapy to slow the course of MS for people with all kinds of MS was recently approved by the FDA.  This treatment is the first treatment to slow a cruel form of MS called Primary Progressive MS, which is a type of MS that gets continually worse from the time it starts (whereas other types of MS have remissions - times when people do not get worse).  This is the biggest breakthrough in years!

As always, thank you so much for your support, which many have given over many years.  I continue to hope that through each and every donation, there will be a day when no one has to hear the words, "You have MS."

Peace.