• Cladribine
• Ampyra (already on the market)
• Fingolimod
• Laquinimod

• Teriflunomide

  • Clinical Trial - Phase III clinical trial currently recruiting participants

• BG-12

So, I guess the bottom line is don't get your hopes up. I'm not sure which one, but a top neurologist in the field was quoted as saying that MS is not a sprint, it's a marathon. Meaning there are no fast answers. You have to be patient and give things time to work. An idea completely foreign to me. Patience is antithetical to my basic personality structure. I really picked the wrong disease.

So, since nothing else has seemed to work I am now trying IVIG, intravenous immune globulin. It is a solution that contains the IGG antibody. The theory is that it may bond to the antibody that triggers the autoimmune response thus rendering it inert. It is also suspected to reduce inflammation. The third potentiality is that it may suppress immune system activity. All of this is a long-winded way of saying let's try a Hail Mary pass. Clinical trials conducted in the states did not report any measurable benefit to those with secondary progressive MS. However, trials in Europe do indicate moderate gain in secondary progressive patients. This is again a treatment whose popularity swells and ebbs with the times. It is also extremely expensive. It is estimated to cost about $100 a gram. I got a jumpstart of 150 g with a maintenance dose of 77 g a month. Insurance companies love me. The upside is it is not a toxic drug, like Novantrone or methotrexate. I don't have to worry about heart failure or some other unforeseen weird contraindication, like drinking orange juice and taking hydrocodone causing a grand mal seizure. (Which might be kind of fun.)

We'll see. I've been on so many different treatments, it is starting to be schizophrenically amusing. I kind of like that it's so off the charts expensive. This month I am more interested in screwing over my insurance company. Maybe next month I'll work on the pharmaceutical industry. Although, that's going to be a much harder nut to crack.

So I guess I am one step ahead of most people. I don't have too many things to get cluttered. Yet it still happens. A lot of my clutter is things left open, un-capped and strewn about my desk. Like pills. The only reason I haven't OD’d on the wrong thing is because I know what each medication looks like. You would need a detailed map and a good book on pharmacopeia to navigate my desk top. Once the pills are out on their bottles it is an almost insurmountable feat trying to get each one back in. You don't even want to hear about the times I have gotten every pill back in the bottle only to tip the thing over on the floor. I have a lot of incongruous items in my room because once I spend 10 minutes trying to open the package of beef jerky I'll be damned if I'll going to use up the rest of the energy going back to the kitchen and finding the appropriate place on the appropriate shelf to put it away. So it just sits there on my desk taking up space and making a mess. I can't fold my clothes so they usually just sit in a wrinkled mess in my laundry basket. I hate living like that. I need more order. It might be anal, but I always feel so much more clearheaded when things around me are neat and tidy.

There are actually some pretty good solutions to these problems. What you should do is make a list of everything that causes clutter and just tackle them one by one. Let's use clothing as an example. If you find your room is more and more cluttered with clothes to fold or put away, try to think (and I hate this saying) outside the box. What I've done and separated my shirts from my pants from my PJs from my towels and put them all into separate plastic bins so that I can just grab whatever I need from the appropriate bin. Another good idea is to put a bunch of hooks on the wall so that you can just hang your pants up; you don't have to fold them or use a hanger.

If you routinely get things out of the kitchen and have trouble bringing them back one at a time have a basket that you can put everything in when you're done using it and make one trip back to the kitchen. Have a garbage can in your room or near where you usually are so you can throw things away right then and there and not wait till they accumulate and start growing things. Things like makeup often come in containers that are difficult to open and close. Many places sell small receptacles that are easy to open. You might think about transferring your smaller items to different containers. If it's too much of a pain in the ass to open and close those childproof caps and thereby leaving your medication open to the elements, ask the pharmacy to put on regular caps instead of childproof ones. They will do it no problem.

There are many solutions to problems you may have thought you just had to live with. An occupational therapist is a good resource to go to for answers to these questions. You can also try looking around online. The Container Store has a lot of good receptacles and solutions to organizing your rooms. You might get some good ideas just by looking around the storage and organization section of your local Target or Kmart.

The bottom line is you don't have to just settle for living in a mess. There are always ways to straighten up, many of them quite inventive. Believe me, living in a clean environment goes a long way to improving your state of mind. There's some stupid saying about a clean area fostering a clean mind or some other such silly platitude. There is some truth to it, however, otherwise I guess it wouldn't have been a platitude in the first place….

If anybody is reading, and you have some suggestions on how I can make changes, feel free to drop me a line. In fact, if you have any words of advice or just need to chat I promise to respond.

So I decided it was time to get up off the mat. New York has a wonderful organization that helps people with disabilities procure gainful employment. It's called VESID (Vocational and Educational Services for Individuals with Disabilities). Actually, each state has one:

Alabama
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
Delaware
Florida
Georgia
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
West Virginia
Wisconsin
Wyoming

There's nothing worse than feeling useless. If you've been unemployed for a while, at least try to go back to work. I promise you, doing something, (even if it's not what you were doing before or pays only marginally), is infinitely better than sitting around feeling useless. If you are still working, these websites may still be useful to you. The Americans with Disabilities Act is pretty specific when it comes to policies in the workplace for persons with disabilities. If you are struggling because of your disability, you might want to check out your state’s advocacy programs.

I've also started looking into work from home jobs. I'm lucky in that my qualifications are geared towards teaching. There are tons of online tutoring jobs out there. There are also resources that help you start up your own tutoring service. I'm sure there are a lot more websites than just this one, but give this a try to start: Work at Home Careers

You can also go to craigslist or a similar website and offer your services. When I was living in North Carolina I got several tutoring jobs thanks to craigslist.

If all else fails, volunteer. The National MS Society is always looking for volunteers willing to help in any way. You can be a peer counselor, help out in the office, or just work at specific events like the MS Walk. If you have a specific skill set, they may be able to put you to good use. This way you won't get rusty. If MS isn't your thing, there are tons of places you can go to look for volunteer work. Here's a good place to start looking : Volunteer Match

The bottom line is you've got two choices: 1) Stay at home lamenting your lot in life. This can be advantageous if what you want is to have no friends, lose all your skills, gain a bunch of weight, and be unspeakably bored for the rest of your life. If your goals are not that lofty give some serious consideration to making the best of the bad situation. Who knows? You might find something new that is infinitely more fulfilling than what you were doing before.

At any rate, I decided against being a defeatist and figured, why not, it's not like I have a busy schedule to clear. The MS Center I go to in New York has a comprehensive physical and occupational therapy department that works solely with MS patients. The areas they work on are expressly geared toward improving spasticity, strength and endurance. It was such a nice feeling to go somewhere and have them immediately understand what I needed and how to go about making it happen. I was even able to have a workout when I was there! Didn't actually break a sweat, but I did sets and reps and all sorts of exercises. If any of you with MS have had negative experiences with physical therapy or have had little luck getting the desired results, I suggest you try to find a place that works with multiple sclerosis specifically. I think you will be very pleasantly surprised.

Equally important is occupational therapy, which addresses things like adaptive equipment, home modifications and alternate approaches to everyday tasks. There are so many wonderful tools out there these days to help people with disabilities function better in their day-to-day lives that a lot of people just don't know about. The occupational therapist walks you through every area of your life such as grooming and dressing, eating, transportation, cleaning, etc. and teaches you about how to work with your limitation as opposed to fighting it. There are so many things that are difficult that you just don't think about, or think that there's really no way around them. These days, there is a tool for everything.

To wit:

Eating: It is impossible for me to scoop up small food out of a bowl, like corn or peas. The damn things always wind up clinging to the side of the bowl in a desperate attempt to avoid being eaten. I can only get like two peas on my fork at a time, prolonging the agony of the survivalist pea and elevating my blood pressure dangerously. They actually make a bowl that has a lip around the rim that you can scoop food into then transfer to your utensil.

Dressing: My legs are diametrically opposed to going inside my pant leg. No matter what position I am able to contort my body into my legs steadfastly refuse to be sheathed in fabric. They make tools for expanding your pants legs and tools for lifting your leg off the ground. (What they really need to make is a tool that can reason with and/or subjugate errant limbs, like a hammer or bludgeon of some kind.)

Bathing : Not only do I have a frozen shoulder, I have a right arm unwilling to reach up to the top of my head making it next to impossible to shampoo my hair. I normally have to dump half a bottle of shampoo on my head and massage it in a little at a time hoping that the sheer volume of product on my hair will be enough to cleanse it. They actually have a long reaching tool that has these nubby things on the end that rub the shampoo in for you.

Transferring: Talk about precarious. Every time I have to get up from my recliner and transfer to my wheelchair or vice versa, I stand up and have to very quickly pivot while holding onto whatever is available and blindly hope my rear end finds its target. Occasionally it misses and I find myself bouncing off the edge of the chair and trampolining onto the ground. They have these cool round discs you put on the floor that you can stand on that swivel you around so you can transfer without worrying about rug burn or certain death.

I never would've guessed that any of these things were available to me if I hadn't done a little internet research and spoken with my occupational therapist. They even have a technology occupational therapist that helps you with all your computer equipment, cell phones, headsets and various technological sundries that I am wont to own. Try getting headphones on with just one arm. Sounds tricky, doesn't it?

So for all you folks who have given up hope that there are solutions to your everyday problems, it would behoove you to look into answers rather than resigning yourself to the difficulties they present. The answers are out there, you just have to know where to look and be willing to put in some effort.

The latter two problems with fast processing speed, worry and high blood pressure, are due to the fact that I expect an effect almost before I submit a cause. “What do you mean the cookies aren't done? I just put them in the oven like five minutes ago.” “I've been on this damn diet for three days now and I haven't lost an ounce." If I take medicine for a cough or sore throat and it hasn't kicked in in the first 10 minutes, I obviously have some incurable form of throat cancer. Internet shopping is excruciating. It's almost not worth the convenience of shopping in my bedroom when I have to wait 7 to 10 days to get what I ordered. I don't think I've ever been able to make it to the end of a book without knowing how it's going to end. I flip to the last page before I've gotten a quarter of the way through the book. Patience is not my strong suit. Let me tell you, multiple sclerosis is not a disease that lends itself well to being impatient. The fact that it takes me more than 20 minutes to get dressed in the morning when it used to take me less than five is something that causes me a healthy amount of frustration. If I head off to bed around midnight I can safely expect to be tucked in around 12:30. Between transferring from my chair to my bed, situating myself comfortably, getting the blankets arranged and a host of other niggling annoyances by the time I close my eyes I'm more awake than I was when I decided to go to bed. If I have somewhere to be at a specific time I need to give myself a good one and a half to two hours head start. I spend most of my day getting ready for the day. By the time I'm ready to get started, the day is over.

All of this is tangential to my point, what was that again? Oh yeah, that I am expecting to do cartwheels after having given my new plan of action just a few weeks to take effect. Sure I have started going to bed earlier (tonight notwithstanding), I'm taking better care of myself, I'm on a new treatment regimen and I am working towards new solutions to current symptoms. But I've only been doing this for a few weeks. I haven't even started physical therapy yet. I've only had one treatment of methotrexate. Yet I am expecting instantaneous miracles. I just need to calm down and realize that nothing that is truly enduring in this world was ever effected overnight. There is no insta-cure, and if there were, it would probably be temporal and half-baked. The key to all this is going to be perseverance. I am probably going to have just as many bad days as I am good, if not more. It's going to be very difficult not to get discouraged. I often feel like I am trying to stop a bullet wound from bleeding with a band-aid (misplaced modifier?), or like I'm trying to stop a dam from bursting by plugging the hole with my finger. I don't think those thoughts are ever going to completely go away. That's fine. As long as I keep them in check and not let them run amok through my brain, I'll be okay. I would rather be Pollyanna than some whiny slob no one wants to be around.

So I guess I am over my pity party, as fun as it was time to move on. I hope I will be away this long again.