Monthly Archives: January 2018

Monkey See, Monkey Do: Helping Hands for People with MS

I was just monkeying around while on vacation a few weeks ago, amazed that the animals jumping between my wife and myself were actually listening to the commands of their owner. I knew that chimps and apes were smart, but seeing monkeys respond to commands was new to me.

I had no idea how well some monkeys can be trained until I read an article in Neurology NowThere, I discovered that some of these little guys are helping people with MS and some other disabilities with their daily activities.

These service monkeys are capuchins. They’re considered to be the most intelligent of the monkey family, similar to chimps and, some say, as bright as a 3-year-old. Since moving in with MS patient Corrine Peters, who’s profiled in the article, a capuchin named Glassie has learned to take off Peters’ shoes, retrieve objects, and help get mail out of her mailbox. Capuchins can also be trained to turn book pages and door knobs and even scratch an itch or groom a patient:

The monkeys are trained to do all this at a nonprofit organization called Helping Hands, and it’s not a quick or simple task, as the Neurology Now article makes clear:

“The monkeys are raised from infancy with a foster family to become accustomed to living in a home. At about age 8, they are transferred to “Monkey College” in Boston, where trainers work one-on-one with them — a process that can take up to five years.”

Once a monkey is placed in a home, a trainer spends about a week with the family getting the capuchin and the family comfortable with each other. And then there’s continued telephone support.

It’s also not a simple task to obtain one of these six-to-eight-pound helpers. The application process may take as long as six months and it requires interviews with family members and caretakers and a video tour of a patient’s home. And not everyone is eligible. For example, you need to spend most of your time at home; to be able to control a wheelchair; and there can be no young children in the home. Also, the Helping Hands website cautions that not every patient will find a monkey match.

“The application process is deliberately designed to give us adequate time for this exploration. For most applicants, this takes three to six months. Applicants who complete the entire process may be matched with a carefully selected monkey helper. For others, the process will reveal that a monkey helper is not the right fit.”

But when the fit is right, the match can be a life-changer. Helping Hands’ Erica Noyes, quoted in Neurology Now, says having a monkey “puts the recipient back in control. The monkey doesn’t see the person as injured or ill. It sees him or her as its protector and boss.” And, says Corrine Peters, “Every day is a new adventure.”

(This post first appeared as my column in http://www.multiplesclerosisnewstoday.com)

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My Lemtrada Journey: A New Year’s Update

Happy new year to all.

The start of the new year seems like a good time to assess what my journey has been like since my first round of Lemtrada (alemtuzumab) back in December 2016. The road has had bumps and hills and dips. But, overall, Lemtrada has taken me where I hoped it would — a place where my MS seems to be stable and my symptoms seem to be a bit improved.

The first three months post-infusion were a real roller coaster. The lowest dip was in late January of 2017, when I developed a fever, slight headache, and a cough. Naturally, my energy level also dropped. It was diagnosed as strep, and after downing antibiotics for about 10 days I was much better.

Around the five-month point, my wife thought I was walking a little better. That’s still the case, but not always. I can flex my left foot up from the ankle just a little. Cramping in the insoles of my feet, which took place almost every night when I got into bed, has been reduced significantly. An MRI of my brain at six months showed no new, active, or growing lesions. But my brain scan has been stable for many, many years anyway. It’s the lesions on my cervical and lumbar spine that are giving me mobility problems. On the other hand, a physical exam by my neurologist confirmed what my wife Laura had detected: I was walking a bit better. So, all positive stuff.

Other small changes involve my B&B: bladder and bowels. Sorry if I’m over-sharing, but I’m happy to report that my bowels have become slightly more regular and my bladder control has improved, with less urgency and less frequency. Most nights I’m up only once to make a pee trip and, occasionally, I even sleep a straight six or seven hours. That alone is worth the price of admission to the Lemtrada roller coaster.

Are there still problems?

Back in February, I developed an aching pain in both hips. At times, that pain would shoot down one or both legs when I put weight on them. My neuro told me it wasn’t related to the infusions. Some Lemtrada patients suggested that it’s the feeling of my body “making new bone marrow.” The shooting pain disappeared last spring. The ache remains today, but it’s much less noticeable.

Last fall, I developed a pain in one shoulder that runs down my arm when I move it to certain positions. It feels like it’s in my muscle and I’m thinking it may be tendonitis. It seems to improve with rest and staying away from my keyboard (!), and I’m planning to try some physical therapy to see if that helps.

What about my labs?

Lemtrada is designed to deliver a knock-out punch to B- and T-cells that carry an antibody that’s thought to play a roll in destroying myelin. When the immune system reboots, it’s hoped the new B- and T-cells will appear minus that rogue antibody.

Because the Lemtrada treatment attacks parts of our immune system, we “Lemmies” have a fixation with the results of the monthly lab tests that we’re required to have. So far, they show my treatment is acting as advertised. After one month, my CD-4 count was down to 40 (normal is 359-1,519) and my CD-4 percentage was 10 (normal is 38.8-58.5). That showed the drug destroyed a bunch of T cells, as it should.

A month later, the CD-4s were above 200, which is the level at which anti-viral medications are no longer required. That count has hung just below the normal range ever since. That’s to be expected. CD-4 measures T-cells, and we want them to return slowly, over a year or even much longer.

On the other hand, B-cells are expected to return to normal after six or eight months. (That’s why Ocrevus, which only attacks B-cells, requires an infusion every six months.) I’m happy to say that at six months, most of my B-cell measurements were just a little lower than normal.

Then, there’s the TSH count, which measures thyroid function. That’s an important measurement because Lemtrada can impact thyroid function. I’d been on a thyroid medication for a number of years prior to Lemtrada, so when my TSH count began to rise slightly above normal at about the 10-month point, it was a simple matter to correct that by slightly changing the dose of my thyroid med.

Ready for round 2

Well, not quite yet. Normally, I would have had an MRI and a visit with my neuro last month in advance of round two. But my wife and I left Maryland on New Year’s Day to drive to Florida, and my doctor and I decided that the MRI, the exam, and round two could all wait until after our late March return home. Look for my next Lemtrada update in early Spring.

(The post first appeared as one of my columns in www.multiplesclerosisnewstoday.com)