What gets on my nerves...

I haven't posted in awhile, just been busy and also not sure which of several topics to talk about. Anyway I decided I was going to update my status first.

At this point I have not seen any dramatic results. Under the more optimistic scenarios I would have seen something like that by now. Realistically, given the length of time my disease has been around, repair is going to be very complicated.

If you look at any detailed descriptions of the Central Nervous System (CNS) which includes the spinal cord and brain, its an incredibly complex system. As I have stated, my left leg function is the most significantly impacted by the damage MS has caused. There is no one nerve, bundle of nerves or place along my spinal cord where one act of repair will "fix" the problem. Its also probable that some tissue is just degenerated entirely which is an altogether more difficult problem. Because signals can be rerouted or there are multiple pathways serving a particular functional area (e.g. calf), some repair does not mean complete repair in the same way that function is not necessarily lost in any one event at any one time.

Even when nerve conduction is restored the muscular strength also has to be recovered. I have experienced some sensations, especially in my left arm which is also affected, that are new and lead me to believe something is going on. The ability of any MS treatment to improve function is very hard to measure. There are no real good quantitative tests, it generally falls to indirect things like walking speed, which combines the aggregate function of many nerves and many muscles.

So in summary:
1. More repair is possible
2. I believe some repair has happened
3. I am definitely not worse than before so am hopeful the rate of progression down has been slowed or stopped.

Three Months...

Ok, I’ve not been writing much lately. I’ve been real busy at work and at home while battling a couple minor but involved medical issues best summarized as similar to a cold but not at the level of the full out flu. In other words, I’ve been down a lot more than I’d like. For example, a little fever will aggravate my symptoms dramatically. Not a good thing. As you may have read here, when I was in Costa Rica, one of my IVs was administered too quickly and the resultant fever it caused and the impact it had on me, was a little scary.

I can’t report any significant changes. The information I have gathered puts the window at 3-6 months (I am at three now) and the migration of noticeable impacts from the trunk outward with time. Otherwise the ability of the process to repair my nervous system remains unknown at this point. As I have said all along, this was always something with uncertain results. And I can be confident that whenever there is any Stem Cell Therapy available for MS in this country, it will be like every MS treatment currently used, “try it and see if it works”.

But I am going to be closing out this chapter of my life soon. This opportunity not only presented me a chance for better functionality, but the time and place to start a new life. Having lived in anticipation and uncertainty for such a long time, I want to focus on what I have in front of me and what I can do now. Maybe I should have already been doing that, to a greater degree than I will, but I’m stubborn and dealing with MS means you have to be in denial sometimes, lest you give up too easily. It can also make you self centered and not much fun. To be perfectly honest, that part of the disease sucks worse than the physical part.

I’ve never been the type to pray for some divine answer to a question. God says, “I’ve given you a brain, work it out”. I’ve got some definite ideas and lots of possibilities. I’ve also got an enormous number of terrific friends and a great family (close and extended), whose love and support will be my motivation.

October

I've been busy at work and busy at home. I have to be sure to keep focused on the positive things that have nothing to do with MS. My wonderful wife, my amazing kids and their rich lives.

Laura works hard to be a great mom and to be a great realtor, both full time jobs and does more than her fair share around the house.

Alyssa is doing the college scene and I enjoy seeing that spark of the transition from youth to adulthood.

Julianne is playing super volleyball and having a leading role in Les Miserables which will be performed in November. And taking classes like Chemistry.

Michelle is doing horseback riding with the wonderful Sarah twice a week and taking care of the cats. I might add, her backpack for school (they don't have lockers anymore) weighs as much as I used to take into the mountains for a four day hike.

I have a full and joyful life. I think my stem cells have been doing some work, they are small, but there are a lot of them.

The 900 Pound Gorilla

In my day to day MS life, my left leg is the 900 pound gorilla. There’s hardly anything I do that it does not impact. I can get by with a weakened left arm because I can just use my right. Walking is obviously made difficult, and that affects endurance. Getting up from a chair or the bed, or even rolling over in bed requires more effort. The impacts are numerous and very obvious. I could hide my MS from you if I didn’t have to walk.

So as I get close to the period where I hope to see improvements resulting from my stem cell therapy, it will be hard to not focus on what’s happening with my leg. There is no doubt it would be nice to see some positive results there. But it’s not the only place I could use some changes and its also true that improved nerve function needs to be accompanied by restored muscular condition, thus the need to work the muscles.

So no matter what happens, I’ll be limping for awhile, I just want the task to be easier. But I’ll be looking elsewhere also. And I’ll be glad for the decline to slow or stop.

The "Stemmies"

I think a lot about the friends we made in Costa Rica. Although I think a lot about those in my situation where improvement was not going to be (and was not) quick, but also about those patients with other conditions besides MS as well as the friends and family with them.

Through our frequent shared rides back and forth to the hospital, time spent waiting for and going through PT or injections, dining together or sitting around in the evening sharing coffee and stories, these are people I am forever connected to.

The polite thing to say is that no matter what happens, getting to know these people was at least a great secondary benefit of our trip. So I will say that. But having looked in the eyes of someone, like myself, challenged by small steps, or a family member with a look of concern I can instantly recognize, I'm really not interested in consolation prizes. I tend to think no one else is much interested in that either. We went there to get better, as individuals and as families.

The Enemy Within

No I'm not talking about some political conspiracy. As a science oriented person, I've never personified MS, I understand stuff happens and whether we understand why or not, doesn't mean someone's picking on us. In all the time up until recently that I've had MS, there was very little I could do to make things better. But if you've been reading along you know I've embarked on this stem cell journey, with lots of help, because I can do something. Not just cope, not just slow it down or hide the effects with some drug, but repair damage.

As we began this effort many obstacles were presented and were overcome but now that I've gone and come back, the process has changed. The stem cells will have about six months to do whatever it is they are going to do and I will have to do the hard work I talked about in my last post. MS is getting personal, it wants me to give up, be tired, have a bad attitude, and accept it. There is no glimmer of improvement starting out to motivate me, it takes time, time in the dark looking for the light. Yeah I know the deal but you don't make a decision to quit, you just give up little by little. Discipline is the only weapon I have.

One of my stem cell buddies from Costa Rica, Mark, wrote on his web site:

Today, I feel worse than I did before I began this odyssey a month ago. Don’t Panic! Those of you with MS know that anytime you make a change to the regimen of your treatment, whether it be a drug you are taking, your diet, or what time of day you take your nap, it always makes you feel worse than if you had just done nothing. That is one of the secret weapons of MS. It wants you to keep doing nothing, stop trying new things to beat it. You cannot succumb to the temptation to rest, no matter how tired you are.

The Near Term

In the time between now and the middle of October, there will be nothing I can expect to happen. I will be doing some physical therapy exercises and taking what should be a good nutrition cocktail; Omega 3, Vitamin D3 and B Complex. I am feeling well and enjoying sleeping. Laura said one night that I felt hot and that it was the stem cells working while I slept. A good reason to roll over instead of rolling out.

I've obviously gone over every possibility for how this will work out and at this point, having been poked and incised with lots of things taken out of me and lots of things put in, I'm just going to focus on what I can do. There were times in the last 15 years I never thought I'd be in position to get better, and plenty of times when I knew I was getting worse. I'm going to enjoy the upside possibilities for awhile.

"in sickness and in health"

If you've been married, you've probably said that. One thing I can tell you from what I saw among the "stemmies" we became acquaited with in Costa Rica, its that for everyone in my position, the importance of a spouse, friend, parent or child in the lives of people affected is without measure. Its a tough job, often thankless, as full of uncertainty and despair as any thing you can do, any life you can lead.

I have told you before but I will say it again, Laura has been a champion, not only for me but more importantly for her children. I have been blessed and am thankful to have her fighting the fight with me.

Day 12

Finished off with my last intrathecal injection and stem cell IV. The side effects of the IV were much less severe this time, Dr. Lara went very slow with the injection. We leave the hotel around noon and will get home probably 12 hours later. I'll post more about the experience and the future coming up.

Thanks for all the prayers and well wishes. We felt them.

Day 10 and 11

Wednesday was my fourth intrathecal injection and the first of two IVs. One of the side effects of the IV is that it can cause a mild fever, which it did to me. As badly as I get around, fever makes things considerably worse. So the rest of yesterday going into this morning was rough but Laura helped me get going this morning and I went to PT which, along with Ibuprofen, got me back in working order.

If all my nerves were repaired tomorrow, I'd still struggle with muscles that have been wasting away. So I will need to work to make any repair count.

Day Nine

Laura did some shopping and we spent a couple hours talking with Mark and Celeste, a terrific young couple here for treatment for Mark's spinal cord injury.

My PT was tough, as usual.

Tomorrow will be busy, but won't start until 10:00 am, so I can sleep late. :)

Day Eight

This was a PT day with intrathecal injection #3, That ends up taking about 8-9 hours when you add in travel, waiting and recline time, the injection itself takes about five minutes. Feeling good. We had Burger King for dinner.

Drivers in Costa Rica are agressively defensive, its probably like what I've heard about Italy.

Day Seven

Mark is here for treatment with his parents, Bill and Mary. Laura and I have become good friends with them in the week we have been here, and today the five of us went out of town to the west coast of Costa Rica and we were guided by Rudolfo and his niece, Andrea, both of whom are very nice with great senses of humor. This is a normal experience with Costa Ricans.

We drove through some lush beautiful mountianous areas, stopping to take a gondola/tram through and over what was described as a transitional rain forest. It was a very unique experience. We had lunch at the touristy town of Jaco on the coast before coming back to San Jose. I am feeling good today.

Tomorrow is PT and intrathecal injection #3. People want to know if I'm feeling anything happening and the answer is not yet. It will be 8-12 weeks before repair due to stem cells starts showing up, I have to tell myself that. We are a drug culture, take a pill and feel something quickly. This is a natural process.

Day Six

Nice restful day. We had some good meals at a really nice Italian restaurant in the hotel. Tomorrow we go to the west coast of Costa Rica for a rain forest tramway tour.

I am doing much better now a day further away from the liposuction.

Day Five

Recovery from the liposuction was the main thing. No real pain but soreness, enough so to knock my mobility down a notch. This afternoon back to the hospital for my second intrathecal injection. Then the evening on my back. Getting a bit tired of being poked but a small price to pay really. No one has been bad at it, which helps a lot.

Tomorrow will be laid back and we hope to do somw sightseeing on Sunday.

Day Four

OK this was the liposuction day where they remove adipose fatty tissue from which they will get stem cells for two IV infusions next Thursday and Friday. Took about five hours from going into pre-op until leaving, a good hour and a half being out in la la land. The rest of the day has been recovering in semi la la land.

Tomorrow will be stem cell injection #2.

Day Three

Started off with PT which has produced some good techniques to use going forward.

Later went to another part of the hospital for my first intrathecal stem cell injection (9 million Mesenchymal and CD 34+). Basically this was uneventful. The doctor who did the procedure was flawless, Dr. Lara from the clinic brought my stem cells in a cooler and Laura watched them being injected. After a half hour laying down we were taken back to the hotel where I spent all afternoon laying flat. No pillow! Listened to the Ipod (including Beatles 65).

Patience. This isn't a drug, its a natural process and takes time.

Tomorrow is the mini-liposuction which will be my roughest day.

Day Three Pre

I will get my first intrathecal injection of stem cells tomorrow. Dreams do come true!

Day Two

PT this morning, mainly focused on ways to improve walking and balance. Otherwise pretty laid back. Tomorrow will be my first intrathecal injection with 8-9 million stem cellls. The advantage of umbillical cord stem cells is that they are adult stem cells thus more differentiated than embryonic, yet are more robust than stem cells from an "older" adult.

The doctor told me yesterday that improvements based on repair begin showing up in 8-12 weeks.

Day One

Mostly orientation and blood draws to use later when injecting stem cells. Also went to the hospital for consultation with anestheseologist prior to miniliposuction and baseline PT session. A couple notes:

1. Facilities are impressive, the hospital is new and clean and state of the art. Everyone is nice and very professional. Its hard to adequately describe it but nothing like you would typically associate with medical care in Latin America. A very confidence building experience.

2. The Physical Therapist was very sure to tell me I had a lot of work ahead to correct some bad habits in my walking style. After 15 years I have gradually deformed my spinal column and posture. She's going to start me over and it will be essential to getting the benefit of the treatment. She doesn't like the word "can't".