Learning to Live with MS

August 25, 2008

Okay, so back to 2006. It was autumn 2006, a good year and a half had gone by before I was diagnosed with multiple sclerosis, primary progressive multiple sclerosis. Well, considering that there is no definitive test that diagnoses Multiple Sclerosis, my docs said that even though I look like primary progressive multiple sclerosis they would keep looking for definitive answers.  Mainly because I was atypical. Atypical chronic progressive multiple sclerosis that looked just like ppms.

For me, it didn’t matter whether it was ppms, atypical ms, or anything else. At that time it seemed like we were all splitting hairs. I was spiraling downward out of control. Just throw me a life preserver. And they did via five day solu-medrol treatments every three months or so. I had three courses of these treatments.

Solu-medrol was great. I got such a rush from these five day treatments. It lasted for about 8-10 weeks before I noticed a backslide. Only the backslides felt more like avalanches. My symptoms reared their heads like a herd of angry lions waiting to pounce on an intruder. I didn’t just take a step backward, or even a giant step backward. I plummeted like snow during an avalanche.

So the docs would set me up with another solu-medrol round. I kinda felt like an addict. I would get this rush of energy, improvement of all my symptoms then the heavy crash. I even had the track marks considering solu-medrol was dispensed intravenously. 

During the last dose, the docs informed me that they couldn’t continue to treat me with the steroids like this. Solu-medrol was a temporary fix until they could get another option approved by my insurance. 

Another option, another longer lasting option. Hmmmmm. What could this be?  Well, I knew already. The docs mentioned it before. CHEMO. Cytoxan. I needed a year of treatment without any sustainable results before insurance covered the expense of cytoxan.  

I really am lucky to have these docs. They were able to keep me going for a year so that the insurance would cover the treatment. It seems modern medicine is really a chess game. A bureaucratic machine that plays with the lives of the sick and ill. Well its not only their lives but all of the people who surround the ill. This makes me angry everytime I think about it. I realize I can’t be helpful if I’m angry. So I need to focus on things I can do, things in my control. Anger is not really a helpful emotion.

In that year 2006 to 2007 I had to learn how to live with ms, how to live with my family while I have ms. This was not an easy task. I was battling my own demons, my thoughts about how I used to be and how I still wanted so desperately to be the person I once was. Each step along the way I seemed to have lost a bit more of me. My physical body was deteriorating while the meds were degrading my mental body.

And the biggest adjustment was that each and every day was different. I went to sleep one way and woke up not knowing how I would be that day. Stress, weather, progression of the disease worked against me. I think that this is the hardest part of ms. Don’t get me wrong, the severe spasticity, vertigo, fatigue, etc of ms is difficult to deal with. But you can deal with those issues once you stop fighting the expectations of what your life should be, should have been. All the ‘what ifs’ and ‘should’ves’ will kill you in the end.

The trick is learning to live with atypical chronic progressive multiple sclerosis that looks and acts just like primary progressive multiple sclerosis. I had to come to the realization that this is the way it is, this is my life as it is, face reality then embrace reality. No, I don’t mean be happy or glad or rejoice because I have ms. I mean realize that there still are many more good things in this world than not. 

My husband stands by side, going through this disease with me. He sees me as the person he has always known. Not any less of a person. In fact he sees me as stronger and better than before ms. I get to watch my son grow up. WOW! If it stopped at just those two things that would be a life worth living, but the list goes on. I am able to appreciate and experience so much of this world that I can’t imagine not being where I am right now.

Ok, yes right now is not so bad with cytoxan behind me and a baclofen pump implanted inside me. But I couldn’t imagine being where I was six months ago, in the throes of chemo barely able to walk from my car to the infusion center and back again. Vomiting all the way home from the infusion center, and for days afterwards. It is the chance to be a better person, to help someone else out, to be. That’s the trick to learning to live with multiple sclerosis.


Hey, look ma no crutches!

August 22, 2008

Well, I am three and a half weeks post surgery.  And look ma, no cruchtes!  That is right. I shed my afos (ankle/foot orthotics) and forearm cructhes.  I don’t even use a cane.  I am walking normally.

I forgot that your feet actually go one foot in front of the other when you walk. For so long my feet went out to the side.  In fact, my neuro-rehab doc described my walk as that of a Zombie: stiff legged and painfully slow. She even reminded me that I should have been in a wheelchair were it not for my stubbornness, and unyielding decision to stay upright until I couldn’t anymore. Giddy with excitement over the results, this doc had me walking for everyone.  And I was glad to oblige.

I also found out that I am more of the exception than the norm with my baclofen pump results.  Most people with mulitple sclerosis, whether primary progress, atypical ms, or your normal garden variety do not get the pump so early or have such great results.

Now, after so many months with this blog, I know what you’re thinking. Why? Why are my results, well quite frankly atypical?  I asked the same question. I even asked why they don’t implant the pump on more people who are still mobile. They tend to have many people who are immobile, even with twisted limbs before a pump is implanted.

Again, relativity and everyone’s ms is different, comes into play. See, in regards to my spasticity I am described as looking more like a spinal cord injury patient. From my trunk down to my toes I have pretty equal severe spasticity. Even leg weakness was bilateral and pretty even; although, my right side is the weaker side but only slightly.

So, most of the time patients have only one side with severe spasticity. Because the pump dispenses lioresal (liquid baclofen) through a catheter implanted directly into the spinal canal, spasticity is relieved bilaterally.  If one side is severely spastic and one side not so much then the result of the pump will be one side too weak to work properly and one side somewhat relieved.  Not good results.

I guess in that case I am lucky. Because of the bilateral severity, I am reaping the wonderful relief that the baclofen pump promises. Imagine that, being so inhibited, being so spastic, being so affected actually works in my favor. Ironic, really. And I love irony.

The other major reason my docs don’t see such great results is that many people choose not to have the pump implanted. I would like to say I don’t understand why someone would choose not to have the pump implanted. But I can’t.

Back in February of this year, my neuro-rehab doc told me I needed the baclofen pump after botox injections were unsuccessful. As I explained somewhere else in this blog, botox is injected in isolated muscles to relieve spasticity. Due to insurance red tape, I needed to max out on oral baclofen AND have unsuccessful botox treatment before being covered for implantation of a baclofen pump.

In February 2008 I had my botox follow-up. The botox only relieved my calf muscles to the detriment of the rest of my leg and torso muscles. I went into that appointment in severe pain because the rest of my spastic muscles were trying to compensate for the now less spastic calf muscles. Basically, my whole gait was thrown off (again! -first time of course is because of MS) creating a great deal of strain on my legs and lower back. 

Yet, I still said “NO!” to the pump. I wanted to try botox once more. So, May 2008 was the target date for the next botox injection. Meanwhile, I was sent to physical therapy. I spoke with hubby, family, and friends. All said, “TAKE THE PUMP!”  Oh, no. I was too young for such a permanent, drastic move. My physical therapist, wonderful woman who is blunt. Which I really like. Give it to me straight. She said “If you got worse after the first botox treatment, what makes you think the second one will help?” Great question, don’t you think. I had no answer for her. I had to admit that botox wasn’t going to work. 

Left with no other option, no other feasible, reasonable, sane option, I informed my neuro-rehab doc in May 2008, that I did indeed want the baclofen pump. Three months later and I am a different looking person.

As my doc says, “You don’t even look like anything is wrong!” Good stuff really. I am even getting used to having this baclofen pump in my side. I am beginning to think of it as my little ticker-it’s what keeps me going physically. Well that and ten months of chemo (Cytoxan). Hubby, son, friends and family keep me going psychologically.

In motion

August 18, 2008

Well, it’s been three weeks since I had the baclofen pump implanted. I am still on a small oral dose of baclofen while the pump gets adjusted. I was hoping to be completely off the oral medicine by now, but my pump has not had an adjustment in about a week and a half due to doc’s vacation.  

My instructions or rather schedule for reducing baclofen had me completely off the med by yesterday. But when I reduced to 10mg of oral baclofen a day, spasticity reared its ugly head. So, per doc orders and my peace of mind, went back to 20mg a day. What does this mean?  It means I need several more adjustments as the pump should only be adjusted by 20% or so at a time. I will have several more appointments before  I am done. That is ok with me.

I am still moving easily; although, yesterday I noticed my feet (had drop foot) dragging on the ground. No, it doesn’t mean the pump isn’t working, it means I needed to go back to 20mg oral baclofen and wait for my next increase to the pump.  That happens in a day or so.  Good stuff.

As for the reaction to my new found mobility, well, it is amazing. One of my siblings with MS also has spasticity. She walks with one Frankenstein like leg, but can easily move around. Well, easier than I used to; and she goes pretty much wherever and whenever she likes. My son used to say, “If you could walk like Aunty, you’d be all set.” Since the pump, he and well pretty much everyone else says, “If Aunty could walk like you, she’d be all set.” It’s all relative. (pun intended).

My doc says I should build myself up to walking 30 minutes a day. She said not to count distance and speed, just time. Once at that goal then I should concentrate on speed and distance, but always go slowly. Not jump into trying to break any speed records.  So far, I have been able to walk twenty minutes at a comfortable, for me, pace.  

Why can’t I walk more than that? Mainly I can’t walk more than that because I am using muscles I haven’t used in about three years. You know the burn you feel when you overwork, strain, pull a muscle? Well, that is how my legs feel when I work them too much, now. Trust me, I am not complaining. I’ll take that feeling any day. It means I am mobile enough, muscles are loose enough to feel that. 

We have a dog – a lab. My son walks him because I haven’t been able to. Now my son walks both the dog and me. My goal is to walk the dog by myself by the time school begins in a few weeks. I used to walk our dog even with my forearm crutches. What a sight that must have been. This big dog being walked by a short woman with forearm crutches. When I was no longer able to walk him, I mean walk him like a mile or two then I trained him to walk on the treadmill. During the school year when my son was too busy to walk our dog, I would go a short distance outside then put him on the treadmill for a mile or two.

A dog using a treadmill. Several years ago during my first course of steroids the visiting nurse, who also loves dogs, asked how I exercise our dog. When I told her about the treadmill, she laughed. Then I told her I wasn’t kidding. She told me she had trouble training her dog with the basic commands. Several months later when I had my second course of steroids, the same visiting nurse came to the house and asked if I still used the treadmill. Even today, I still use the treadmill for the dog and now I’ll use it again for me.

I got the idea for walking the dog on the treadmill from watching ‘The Dog Whisperer’ with Cesar Millan. I saw him use the treadmill for a family that had an energetic dog and not enough time to exercise the dog. I thought I have the time but not the ability to exercise my dog like I used to. I used to take my dog on three to five mile walks five times a week. The treadmill seemed like a good option. So, I guess Cesar Millan saved my dog from becoming a couch potato. I was also kind of proud of what I had done – teaching my dog the new trick of mastering the treadmill. Thanks, Cesar, you’ve got us all in motion.

Baclofen Pump

August 14, 2008

I was recently on an ms forum discussing the baclofen pump. One woman I met there was from Canada.  She needs the baclofen, on high dose of oral baclofen with increasing spasticity, pain-you know the routine by now.

Well, being in Canada with universal healthcare she has to wait about 18 months.  Yes, I did say 18 MONTHS.  I know the healthcare system in our country is less than perfect as well.  But when you are dealing with a progressive disease like ms 18 months is a lifetime.  

I decided to take my doctors advice regarding the baclofen pump in mid-May of this year.  Three weeks later I saw the neurosurgeon for a consult. Three weeks later I had my test dose.  Four weeks later I underwent the surgery.

Simple math results in 10 weeks I waited from the time I made the decision to get a baclofen pump until I underwent the surgery.  Two and a half months.  Plus I had a choice of doctors.  That choice included the three or four neurologists I sought opinions and help from in just the initial diagnosis of this disease.

So I guess this time around, with the election around the corner, I am soapboxing a bit.  I like the idea of healthcare for everyone but not the practicality of universal healthcare.

I would not like waiting 18 months for the pump.  Between the lack of movement and pain it would be a real test of my mental fortitude.  Of course, some would say it is an excellent opportunity to test and tweak your mental fortitude, faith, etc.  

I think we need to really understand Universal Healthcare before we begin voting.  It may affect all of us in ways we never imagined.  Sometimes good ideas turn out bad results.

Recovery from Surgery

August 12, 2008

Well, it’s been two weeks since my surgery to implant my baclofen pump.  The surgery itself went great. I am healing nicely and the pump is working great.  I am still not fully weaned from the oral baclofen, but making good progress. 

Apparently, my body does not like either anesthesia or percocet.  That was the one hitch during the recovery in the hospital.  So, on Monday July 28 I was trying to recover from surgery while getting sick.  Oh yeah, one more thing. Because implanting the pump is one HUGE lumbar puncture, you must lay flat for the first 24 hours.  I knew this going into the surgery but didn’t count of being sick from the meds.  The next day they switched me from percocet to vicoden.  Much better! Sigh of relief!  

The nurse, which I had the prior day, even said “I bet you second guessed your decision yesterday.”  That was and understatement.  But, I did keep reminding myself that having a baclofen pump is a process. First you must heal from the surgery while transitioning from oral to liquid baclofen and going through physical and occupational therapies.

The big question of course is did it work? Does it work?  Yes!  For me, the pump is working.  I am walking with only a cane now.  I packed away the forearm crutches and leg braces.  There are still some nagging stiffness, but as I said I am still transitioning.  

I guess one of the hardest parts of this whole process for me, and it is really why I didn’t initially jump at the idea of a pump, is the idea of having this device in my body.  It is like a mental game I play.  Do I want to live the rest of my life (41 years old now) with this artificial device in my body?  Yes, it definitely helps me walk, reduces pain level, and most importantly I can the relief in my son’s and my husband’s faces.  So I logically and intellectually tell myself this is the best.  

After all the chemo and now the pump I feel better than I did three years ago when I first walked into my current neurologists office.  The catch is with atypical multiple sclerosis that acts just like primary progressive multiple sclerosis I can’t help but think I am on borrowed time.  Really when you look at life there are no guarantees of health or longevity so in a way we are all on borrowed time.  Makes me want to make a difference in this world, even more than I did before.  I feel a pulling toward helping people because through all of this I have learned that we are all suffering in some way whether it is outwardly visible or inwardly destructive.  All of this, the past three years, I have met people that have no health issues that are miserable, unhappy or people who seem to have it all yet they are nasty or not quite right. We all suffer somewhere.

Back to the pump.  On the afternoon of July 29 I was transported to a rehab hospital where they should have adjusted the pump and given me PT and OT.  I somehow slipped through the cracks and no doctor made any adjustments.  In fact, I never saw a doc there despite my constant asking and badgering.  So on Friday August 1 hubby (who was by side the entire week, even sleeping the first night in the hospital because I was so sick) and I left the rehab hospital.  Filed a complaint and walked (Yes, I walked) out of that hospital and into my neuro-rehab doc’s office where she explained the entire pump, precautions, expectations, and made the first adjustment.  

Both the neuro-rehab doc and the surgeon went over the pump before the surgery.  I was well aware of what I was getting into before I jumped.  I know since we (hubby and I) made the decision to undergo implantation of the baclofen pump I have heard other people say they were not prepared for or expected too much from the pump.  Again, I think this is what is wrong in the medical field.  Too many docs and others see us as patients (things like a chair,the manilla file folders that keep our medical history) and not people.  I have learned to ask any and all questions, to research as much as I can.  And most of all I feel very lucky and happy to have the doctors I have.  Nothing can replace trust and caring when it comes your health.