miracle drug? the 'walking, talking and thinking' pill

A few montha ago my ms Dr. had me start on a new drug - '4AP'.  The full name is 4-Aminopyridine and it is a compounded drug.  What is compounding?  From the website of where I get my 4AP, National Pharmacy Specialties,
               Compounding combines an ageless art with the latest medical knowledge and state-of-the-art technology, allowing specially trained professionals to prepare customized medications to meet each patient’s specific needs. Compounding is fundamental to the profession of pharmacy and was a standard means of providing prescription medications before drugs began to be produced in mass quantities by pharmaceutical manufacturers. The demand for professional compounding has increased as healthcare professionals and patients realize that the limited number of strengths and dosage forms that are commercially available do not meet the needs of many patients, and that these patients often have a better response to a customized dosage form that is "just what the doctor ordered".

4AP also comes in a FDA approved commercial form, Ampyra, though it's price tag reflects it's commercial status.

4AP is a potassium channel blocker that is prescrbed to improve walking and other motor activities.  I, personally, have not noticed a huge improvement in my walking, but have noticed better stamina and minute improvements with my walkinging - noticely helping to keep my my toes from dragging in a manner common to ms called 'foot drop'.  What's surprising is that the first thing anyone noticed with me after I started taking it was an improvement in my speach and cognition (thinking).

Refusing a chair

When I first was getting diagnosed with MS in 2006, just after starting my first job after college, I was perhaps too open with what I was going through.  I'll probably never forget the reaction of one of my co-workers when I announced the diagnosis, 'Oh, I'm sorry you'll be in a wheel chair.'  My grandmother had MS, SHE wasn't in a wheel chair except when we toured Washington, D.C. - WHAT?!  No way am I going to need a 'chair'!!

And then, I decided to have my sweet baby boy in 2010 and everything fell apart with my hips and I went from using my cane outside the house and not at all inside to needed a walker everywhere.  I got a powerchair because I couldn't move anything with the walker (laundry, dishes, etc.) and had a baby on the way and would need it for him.

So, I learned how to drive in my new wheels without completely killing all of the walls, woodwork and furnature - and they all still bare the scars og my learning curve.  Then Cody was born, and I quickly learned I should keep a rag not only on my shoulder, but my chair too.

And he started to try and help me 'drive'

And I depended almost completely on the chair, not leaving the house too often and using a walker, Cody's stroller or somebody's (usually my husband's) arm and my cane to get around.  I was fortunate enough to have some great in-home physical and occupational therapists (PT and OT) come out to the house right after Cody was born too, to get me so that I could start living life more normally again and leave the house.  They typically worked with home bound elderly patients and coming out to work with me and the new baby seemed to bring them a lot of joy.

Last winter, as I wrote about some in my 'Muscle loss and gain' post, I drove the half hour into town and went to regular PT along with some aquatherapy and got a little stronger.  Just going in to town three days a week was therapeutic and strength building in itself!

I make it a point to not include any of my assistive devices in any photos, because I don't want the 'stuff' to be a part of me... and I guess having the assistive devices in photos permantly attaches them to me - in my mind.  But, the thought process that led to this post, I can use the devices to assist me while I need them, but I don't need to integrate them into myself like I have the last couple of years.  Problem is, yes, I'm free walking in the house and even a small amount outside more, but trying to walk one place and have the chair to help (assist) me to move whatever back gets complicated, i.e. to take a full basket of laundry down to the laundry room I need my chair, but I can walk back to the bed room carrying the empty basket, but I need the chair again to get the next full load down to the laundry room again.  So I end up in the chair and not using my legs like I should.

I firmly believe that the more you use an assistive device, the more you relie on it.  I know I am able bodied, but have, in my opinion, used my chair too much and have started to go to that first.  I don't want to be there.  I want to be able to go catch a horse, saddle him (or her) and ride out for a ride like I used to do (several hours) and still be able to dismount and untack my horse.  I *should have* gotten my walker to go out to take pictures of the new water hydrant...

...and the cats and horses.

But, I was already in my chair to take scraps to the cats and went out my front door, rather than the garage where I keep my walker.  Perhaps, I should do like someone (my mother?) suggested and just start using my wheeled walker inside too and mostly abandon my chair. 

One positive, all the horses are very 'chair boke' and Cherokee and his 'brother from a different mother', Patrick, followed me around the pasture when I went in to see what needs to be done this spring.  (wish I had the funds for a wagon and team harness and to get the two of them broke together - they're inseperable in the pasture!)

It was really nice to see that Cherokee, my painted pony I've been putting the most miles on, worked with me loose in the pasture, from my chair, just like he had a lead on and went with me everywhere and would come when he stopped and stood somewhere until I realized he wasn't with me and called him.  Gotta love my goofy little painted pony!

UPDATE: 12/5/12
     I went without my chair for nearly a week leading up to and over Thanksgiving.  I was able to do it, but the stress of not having my chair was, surprisingly, not just physically straining but also mentally, as I couldn't 'just go get' anything - including my son, who's now 2 and into everything.  I've gotten used to having to rely on people more often, though it's still not easy, but then you go for the holidays and add into the loss of independance the loss of your own time schedule, because, and rightly so, you have to wait for people to come assist you.  I think the next post on this will be 'accepting the chair', or something like that, as I sort things out a little better in my head.  Really, what's so bad about conserving energy to do what needs to be done or specific exercises, rather than walking across the room with no aids?



 

Starting....

Ever start a project, activity or, get on a horse and stay to yourself, "What WAS I thinking?!"  Well, horses; there's only been a couple in my life where I got on and litterally prayed that things would turn out okay.  Activities; there's been a few... portaging a canoe in the Boundry Waters in MN I distincly remember thinking to myself I was stupid, several roller coasters of course had their moments of 'NO, no, no, no, NO!', taking off at a dead run on a fast horse... who was faster than you thought it was, and there was the time I hopped in a family friend's fuel injected sprint car you could start with a push of a button and my ever fun family started rolling it with me in it.  Projects; on a regular basis.  Things ALWAYS seem simpler in your head!

My latest project: painting my bedroom set that consists of a dresser, mirror and 2 night stands my parents baught for me before I started high school at an auction, a full bed my mom found in the attic of a place she lived LONG before me, but looks amazingly like it goes with my other furnature, and a book case that doesn't 'belong'.  I painted the book case to learn the ins and outs of painting furnature (did I mention that this is my first time?).  Not a problem, so I started on the dresser.

Here's what things looked like before, I think it was tan with gold trim before we got it in it's white color.

SO, because of it's beat up nature, and the fact Mom painted the bed brown when she had it, I decided to repaint them all... with a blue/green piping the bed used to be - tra le de la da! (insert the 'WHAT am I thinking?!')

Looks good, right?  Now, this is after my dear (poor? lol) husband interviened to get the paint on more evenly because my first TWO coats weren't looking so hot.

Then... this morning I started the piping...

 

Doesn't look horrid from a distance, but then you look closer and wonder what someone with poor dexarity was thinking! 

Taking pictues helps, gives me some hope.  But still going to wait until my PH (poor husband) gets home before doing more so there's less to undo if we scrap the idea.