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.

The horse; pet or livestock?

I've been sitting on this title for a long time, intending to go get a bunch of research to post with this - but I think it's time for me to just write it... as my opinion.

With all of the banter over the horse processing plants that were closed in 2007, and that many horsemen (myself included) are working to get opened back up, if only through signing petitions, sending letters and trying to educate people about what's happened with horses still being slaughtered - but being shipped to Canada and Mexico for it.  I've still have slaughter waiting for a topic, but we'll stick to pet or livestock right now.

So, a web search of what they are officially classified as brings up all sorts of things, including the slaughter controversy, and is part of why I've had this title to write on for a long time but haven't moved forward on it.  I *believe* the USDA still has them classified as livestock, but definitely not a food animal like cattle, but then California recently, to my understanding, took that title off and have their horses 'unclassified' - it's all a jumble, with a lot of emotion tied into it.

Personally, I cannot NOT classify horses as livestock - they're large and live outside, not to mention that they use large animal veterinarians (NOT the 'pet vets' you find in the middle of the city) and you can't keep them in the city limits of them vast majority of towns.  I've never heard of anyone 'potty' training them like you do a cat to use a litter box (well, you don't really *train* a cat, but they prefer a box) or a dog to go outside and even the miniature horses aren't small enough to fit in a cage or terainium like birds, hamsters, and lizzards, etc.  BUT, I also believe that livestock can be pets.  With the way my own horses are treated, I'd say they are pets... or, more accurately, companion animals.  I've also seen 4H kids with their show livestock, be it sheep, chickens or a 1000 pound steer, treating them like pets - caring for an animal, and maybe spoiling them a little, isn't what determines how they are categorized.  Bottom line, in my mind, is that livestock have a job either feeding us or working for us.  In which case, many dogs would be considered livestock as well with all the hearding, gaurd and service dogs out there.  My daughter also shows rabbits in 4H and has to do a quality assurance training every year because rabbits and chickens are considered livestock with 4H, to my knowledge - due to the fact that many people breed and sell them for meat, like cattle.

Chicken legs...

I KNEW there was a reason I usually wear jeans! 

 

This past Labor Day weekend, I had a good friend invite me AND my two kids to go boating with her, so, I wore shorts. 

Let me tell you, those are some skinny, pasty white calf muscles I have. 

I'll leave you (and me for future reference) with some calf building exercises I'm going to start doing.
Best calf muscle building exercises

Wish MS were terminal?

I did - a LONG time ago.  I'd just started running into my 'new normal' of walking with a cane and not really cantering, had just lost my first job after graduating because of the MS diagnosis, had my mother and mother-in-law take my daughter (then my only child) for the summer 'so it'd be easier on me', plus the heavy feeling of that this would always be how it was going to be - hard to live with.  Well, I just saw this story on the 'We're Not Drunk We Have MS' Face Book community page;

MS sufferer rode wheelchair for two hours to kill herself
An MS sufferer travelled for two hours in an electric wheelchair to commit suicide in a canal - after her twin sister refused to buy her flight to the Dignitas clinic in Switzerland.

Carol Hutchins is supported by her stepmother Jane and father Alec after completing the Reading Half Marathon in 1993. She was a keen runner before MS struck her down Photo: INS
7:30AM GMT 24 Feb 2012
The day before Carol Hutchins died, she arrived home in floods of tears after the lever on her buggy had jammed leaving her unable to throw herself over a 3ft fence and into the water.
Determined to end her life, Mrs Hutchins returned to the canal the following day and got the mechanism working to lift the chair above the height of the fence.
The 53-year-old waited until a crew of workmen cleaning graffiti nearby went on a break before heaving her body, which was immobile from the chest down, into the water.
When the labourers returned to the towpath of the Kennet and Avon Canal in Reading, Berks., they found the empty wheelchair and then spotted Carol floating face-down in the water.
Police constable Victoria Blaszko (corr) leapt over the 3ft fence and dragged the middle-aged woman's body from the water as fellow officers, firefighters and paramedics rushed to the towpath.
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Mrs Hutchins, who had been described as a vibrant woman with a "larger than life personality", was taken to hospital where she was declared dead shortly after arrival on October 22 last year.
A post mortem examination gave the cause of her death as drowning.
The Berkshire coroner heard that Mrs Hutchins was diagnosed with MS in 1989 and had taken part in marathons before MS ravaged her body and left her wheelchair bound.
Her sister, Ingrid Foan, said that in July 2010 her depressed sister was unable to do anything for herself and begged her to buy a one way plane ticket to Switzerland so she could end her life.
"She was terrified by what was happening to her," she tearfully told the hearing in Windsor, Berks.
She told how her sister had said that she had "lost everything and didn't want to live like this anymore," and had previously spoken of throwing herself into the canal.
Ingrid explained that after a 10-week hospital stay her sibling's condition had improved and she was able to do much more for herself.
Carol's devastated parents, Alec and Ursula, said they believed their daughter had planned to end her life before her condition worsened further and she could no longer control her destiny.
Mr Hutchins said: "We think she planned it while she was in hospital.
"She didn't involve anyone else. She knew exactly what MS was and what it was doing to her."
When asked whether they thought Carol had taken her own life, Mr Hutchins replied: "I'm in no doubt."
In recording his verdict coroner Peter Bedford said that Carol was suffering from a "horrible" disease at the time of her death.
"From the evidence given to me I am quite satisfied that Carol Hutchins died on October 22 last year at the Royal Berkshire Hospital and that she took her own life while suffering from multiple sclerosis and depression."
Speaking before the hearing Mr Hutchins called for assisted suicide to be legalised.
"Carol was a very courageous woman but at the end of the day she has demonstrated a need for euthanasia in this country," he said.
"People say life is precious but there comes a point when life is not precious and it becomes torture for those that are living.
"Carol had thought about going to Dignitas in Switzerland but it is very expensive and it puts other people in a difficult position.
"It showed tremendous courage for her to do what she did all alone and I believe that she had planned it after having enough of being a prisoner in her own home.
"She knew one more setback could leave her totally immobilised and she wouldn't be able to do anything for herself and she would just be washed, dressed and stuck in front of the television."
Story

All the comments to the story can be seen at: https://www.facebook.com/WereNotDrunkWeHaveMs

Personally, I can understand.  I've only been diagnosed for about 6 years, and most imortantly, I have a GREAT support system who have worked hard to help me keep riding the horses.  I have trouble now feeling sorry for myself just with the amount of help people give me to keep me riding.  In the last month alone, I've been literally drug off my horse to get me on the ground about half a dozen times.  But, on the plus side, I have people who don't mind doing that for me and have over 100 miles for the year in the Distance Derby!

Long time no see

I was going to post regularly earlier this year, but it didn't happen.  I've got several posts at least titled, that's a start, right?  No.  It's 11:30 here, but I WILL get going tomorrow!  See you then.