Numbness

I developed numbness in my left shin. I reported it to the doctor's office.

(Update 4/15/09: numbness is gone, lasted about two weeks and did not spread.)

Doctor visit and medical update

I saw Dr Gitt, my neurologist today. He suggested I go into the trial for alemtuzumab. It is an IV drug that has been used for a type of leukemia and is being tested for MS. The results have been promising. Mary sent me this: http://www.medicalnewstoday.com/articles/126550.php It is administered by IV for five days (a few hours each day). Then it is administered for three days a year later. Two thirds of the trial gets alemtuzumab and one third gets Rebif, which is similar to the Betaseron I take now except it is 3x/week instead of every other day. (MS trials do not use placebo groups; they use one of the current treatments for the control group.) The side effects are ITP-idiopathich thrombocytopenic purpura, which is fatal if not treated, but easily treated, and thryroid problems, which are not desirable but also treatable. It's a big decision but the pros as I see it are: careful monitoring (more than standard care), treatment paid for, 2:1 possibility of not giving myself injections for the next two years, and improved MS. The cons are possible thyroid problems, continuing injections if I end up in the control group, and developing ITP.

Court affirms moment-of-silence law

Go, freedom! I love it when the constitution is interpreted the way our founders intended. :)

From the Houston Chronicle:

DALLAS — A federal appeals court on Monday upheld a Texas law that requires public school students to observe a daily minute of silence in order to pray, reflect or otherwise remain quiet.

A three-judge panel from the 5th U.S. Circuit Court of Appeals in New Orleans affirmed a district court ruling, saying the law, which took effect in 2003, is constitutional because it expressly allows any silent use of that minute, whether religious or not.

David and Shannon Croft sued on behalf of their three children, who are enrolled in the Carrollton-Farmers Branch Independent School District. The suburban Dallas couple contended that including the word “pray” in the mandatory moment of silence law was a way for lawmakers to advance religion in schools. Another family joined the Crofts in filing the lawsuit but chose to remain anonymous.

CHAVEZ FOUGHT ILLEGAL IMMIGRATION

Check out this great post about Cesar Chavez:

http://www.azcentral.com/members/Blog/Jim8413/49027

and the followup by another blogger:

http://www.azcentral.com/members/Blog/Mike1633/49051

Learning from Dog Training Shows

I just caught up on my Dog Whisperer and It's Me or the Dog episodes. I certainly don't agree with Cesar or Victoria on everything but here's what I picked up this time. Cesar says "You don't always get the dog you want, but you get the dog you need." I like that; it applies to alot of things in life! He also showed what we have been doing wrong with Teka--when she snaps at a dog, she gets removed or the other dog gets removed. I don't know that we have enough control over it (who wants to leave their dog there for our training purposes?) but she should not be removed, just calmed and walked back in to greet. I'll see what I can do. I think she is going to visit my sister soon. :) (5 dogs on 10 acres, they'll teach her what's up.)

Victoria showed some home adaptations for an older dog that was going blind. I've never dealt with something like that so it was interesting. She recommended putting a different scented (unlit) candle in each room so the dog knows where it is. Also, for places the dog will have to step up or down, put a mat with a different texture than the rest of the flooring to signify the change. That might also work for locations that the door is sometimes closed but not always.

Who decides what we think?

I couldn't have said it better myself. Well, maybe if I had more time. :)

http://www.azcentral.com/members/Blog/TedThayer/48911

Raving Fans

I listened to Raving Fans, an old book on customer service. It was cute, like a parable type of style, but I don't know that I'd recommend it. There wasn't anything new there (it is old) but maybe it would serve as a reminder of how to treat people.

20s/30s Squad 3/12/09

Tonight's squad meeting was at the new Chapter location. Dr. Hendin talked about trials and explained the phases very well. Phase 1 is animal trials, Phase 2 is healthy human trials for safety, Phase 3 is unhealthy human trials for efficacy (does it work on the people that need it?), then the drug is released for use. If trials need to be run to use an approved drug in another way, that is Phase 4. This is not done if the cost does not show enough benefit. For example, Provigil is approved as a narcolepsy drug. It is sometimes prescribed for MS fatigue but that is not the approved use. If the drug company wanted to get that use approved, they would do a Phase 4 trial. It is unlikely they will do that trial since the benefit is small. Many doctors prescribe drugs for another (off-label) use.

Several attendees are participating in trials. I spoke with one person who is getting the annual injection. He got a rash during the first one, which is every day for 7 days. He will have a 3 day injection after a year and then is unsure what happens after that. This is the drug that can cause large blood blisters, which if not treated, lead to death. Yes, all the drugs have side effects, and the more efficacy, the higher the risks. It's a huge burden to everyone with MS to make these decisions about their own treatment. Their doctors help, but makes it very important to get the right doctor, maybe second opinions, and be very informed about options, treatments, and risks.

I thought it was funny (not ha-ha) that Dr. Hendin said the oral drugs are for (among other things) people who do not like injections. Who likes injections? Buehler? Darin said I need to call Betaseron to get the other pieces to the autoinjector that they don't send automatically. They allow more shallow injections. I'll add it to my to-do list. I also need to follow up with Phil about volunteering with the Chapter. I will be calling newly diagnosed in the 20-30's age group.

The next 20s-30s group is June 4 at Skateland.

Montel Williams on Oprah

Montel Williams was on Oprah's show this week. He has MS and has written several books about his struggle. Dr. Oz was also on the show and explained MS in a way that was very understandable. He had a electrical cord and the rubber casing had holes. The nerves are the wires; the myelin that protects the nerves is the rubber casing. The immune system attacks and damages the myelin, creating nerve damage which creates the MS symptoms.

While his symptoms are quite different from mine, I really related to a couple of Montel's comments. Dr. Oz asked him what he is most scared of when he wakes up every day and he said not being able to walk. They also talked about how he takes care of himself by exercising, taking handfuls of pills, and taking (Copaxone) injections. These are daily reminders that he has MS, and he wishes he could just wake up and have a normal day. He used the elliptical machine to align his hip flexors like I recently found out I could do.

He was different in that he has been suicidal and has constant pain in his feet and face. I also have pain issues but very different symptoms. I have had depression but never suicidal. I certainly have those moments, full of pain, that I think I wish I was dead but I would never act on it and I am grateful for the life and abilities I have. I am blessed, as my friend Jason (J-bird) would say.

I thought it was a good show but could have been better by showing others with MS so that people can see how different it is for each of us that live with MS.

Colbert's World of Nahlej: Shmeat

The funniest thing I have seen on The Colbert Report EVER. Shmeat: is inescapable future of humanity.

http://www.colbertnation.com/the-colbert-report-videos/221975/march-17-2009/world-of-nahlej---shmeat

(Wait for the Priceline commercial.)

I hate Peta. Ingrid is a nut and I think she is gross. She is obviously too far removed from the sources of her food. I'm sure I will be coming back to this topic.

Per Urban dictionary, Shmeat is an amalgamation of "shit" and "meat", animal tissue engineered in a petri dish, sponsored by PETA, supposedly with the aim of replacing meat for consumption. See http://www.urbandictionary.com/define.php?term=shmeat for the rest of the definitions! Yum, or something.