Filling in the blanks
September 25, 2008
Okay, so I thought I would go back to the last part 2006. Finally diagnosed in fall of 2006, and set for my first steroid (solu-medrol) in Ocotber 2006. That was a learning lesson. But how long would the effects of steroids last? I was hoping forever.
Of course, we know that doesn’t happen. However, the docs, as usual, give you the pat answer, ‘Well everyone reacts differently’. Yes, but isn’t there some kind average, a typical time frame, something. No, not really or at least not that they were willing to utter. I guess that is for the best because sometimes if you give a person parameters (read boudaries) then that person conforms to that boundary. The proverbial self-fulfilling prophecy.
I really have learned to live each moment. In a part due to these wonderful docs of mine and in part due to slowing down in general. Learning to accept change (covered that yesterday, so I’ll stop there). Back to the story…
By the end of december of 2006 I began to slide downwards. Well, more like flying downhill on an icy slope with the new sled you just got on Christmas. So in Jan. 2007 (Hooray-its 2007) I saw docs who really pinned down exactly when I felt the slide. Which was about 8 weeks or so after the ‘roids.
Another course of solu-medrol was ordered and administered in February 2007. Now by this time I had already seen a neuro-physiatrist to assess my walking and aid in whatever way possible. By Thanksgiving 2006 I had two AFOs (ankle-foot orthotics). Or as I lovingly refer to them as my legs. The physiatrist also gave me my beloved lofstrand crutches. Love really has nothing to do with it. I did notice a difference when using the braces and crutches. I certainly was not blazing any trails, but I was able to move around better, last a little longer. But, really it was the jolt of steroids that I had come to enjoy.
Solu-medrol (each time I had the steroids it was a five day course) really gave me a boost. I felt better, not great, but better. The only problem was that it didn’t last. Oh yeah, one other problem was that I took nose dives each time the stuff wore off. I mean it was like in a movie when the elevator is out of control and careening to the basement.
So by April 2007 with the steroids worn off, I was in pretty bad shape looking for another fix. Really, I felt like that. I wanted to feel good again; and couldn’t wait to see my docs so they would give me another course of Solu-medrol.
My docs had a different idea, which they had alluded to the previous few visits. The idea was cytoxan-chemo. A year long treatment of monthly doses. As I previously shared, other family members have multiple sclerosis, have chronic or atypical progressive ms. So hearing ‘cytoxan’ was not completely new to me, to us (hubby with me every step of the way).
We sat and listened to their plan. Asked many questions. Finally, I asked “If this was your wife…”. Before I could finish the question, the doc said, “Yes, my wife, my mother, my sister, my daughter, my son, myself. This is the course of treatment I would insist they use.” WOW! He was straight forward and unwavering.
Now, I have to say that I have heard people with ms say before, “Seems the treatment is worse than the disease.” I have never experienced that. I think that if this is your experience than perhaps you are not as bad off as you think.
Even before we left the docs office that day we (hubby and I without even speaking) were eager to scream “YES! We’ll take the cytoxan”. But being the docs they are, they did not want an answer then. They gave us info to take home and read over the weekend. I could not wait for monday to call them and get started.
Why so excited about chemo? Well because the treatment was not worse than the disease. Within two years of onset I was unabe to do much of anything besides sit on my couch. I have stairs to climb to get to my second floor bedroom. Without help from hubby and son I wouldn’t have made it at night. Hubby and I were getting ready to change our first floor living room into our bedroom. The only problem was my first floor didn’t have a full bathroom. I still needed to climb stairs to take a shower.
We jumped at the chance to slow, halt, reverse some of this progression. I mean I should have been in a wheelchair, I was too stubborn. I’m too young for that, I thought. So we set out on a year long journey. This was a huge commitment by my whole family, but we stuck together.
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.
Multiple Sclerosis Walks and Bike-a-thons
July 3, 2008
I understand that money needs to be raised to finance research for Multiple Sclerosis: new meds, cause of MS, etc. But, I have PPMS (Primary Progressive Multiple Sclerosis) for which the National Multiple Sclerosis Society seems to finance very little research into any disease modifying drugs.
I know that only 15% of PwMS have PPMS, but if there are 400,000 people diagnosed with MS in America, that means 60,000 of those are diagnosed with PPMS. So for many years these 60,000 including myself were and are told that we don’t really matter. Putting a smile on your face with a positive attitude doesn’t really cut it. I mean within one year of symptoms appearing I was (and still am) walking with forearm crutches. In fact, a wheelchair was waiting for within two years. Luckily, my docs offered Cytoxan (still an experimental drug for treating PPMS). I took it, and it helped.
THERE IS NO APPROVED DISEASE MODIFYING DRUGS FOR PRIMARY PROGRESSIVE MULTIPLE SCLEROSIS. So where has all the money gone. To Relapsing Remitting Multiple Sclerosis of course. After all 340,000 people are affect by RRMS.
I participated in exactly one MS Walk. The first year my sister was diagnosed with MS. I rallied the family, learned how to fundraise, organized and orchestrated our team. That was when I could walk. I watched my sister steadily decline. Unsure whether she had RRMS or Secondary Progress (SPMS), docs put her on Copaxone. She did well for awhile.
The following year my other sister was diagnosed with RRMS. She had one brain MRI. She was lit up like a Christmas Tree. No lumbar puncture, no evoked potentials, no brainer-RRMS. She too was put on Copaxone. Meanwhile, I was trying to get diagnosed with something so that I could receive treatment.
See the dirty little secret is that along with no treatment for PPMS, it is very difficult to get the NMSS to speak about PPMS. After all, how many dmd (disease modifying drugs) does RRMS need?
So this brings me to MS Walks and Bike-a-thons. It’s great that so many people with MS can participate in theses events. There are so many cannot participate. We don’t need someone else to do it for us, that happens often enough as it is. We, PPMS’ers, need help with daily activities as it is.
Why doesn’t NMSS sponser fundraising events in which everyone can participate? As my husband says, “Having a Walk for people that can’t walk, is like having a drive-a-thon for those who cannot see.”
Atypical Multiple Sclerosis 