My Mom's Thoughts

This is Michelle, Tammy's daughter. My mom asked me to help her articulate some of her thoughts and jot them in her blog so they wouldn't be forgotten. At one point she called them her "final thoughts...final thoughts for now." I hope I understood all of her thoughts correctly. All direct quotes are hers.

First, Tammy subscribes to a blog called the Wheelchair Kamikaze. Marc is the name of the author, and Tammy has emailed Marc on several occasions to discuss various MS-related matters. Tammy feels like she knows him personally, like they're friends. Marc appreciates this friendship and always responds really thoughtfully to her.

Anyway, Tammy says she finally understands what Marc has been saying about drug testing. Marc subscribes to the belief that the drug companies and doctors only pursue paths where there is money to be made. Money is the only motivator. Tammy says that Marc knows more about the pharmaceutical companies than he lets on, and that by saying "they only do what the money does," he's just trying to "talk our language."

Marc is a supporter of the Tisch MS Research Center in New York. The Tisch Center is currently moving into its Phase II trial of their stem cell treatments. The PPMS patients involved in the Phase I study saw significant, positive results for rejuvenating lost nerves. Some were even able to walk again. The results can all be downloaded here. It looks extremely promising. Tammy thinks that now that the trials have been approved by the FDA, they will begin to get more support.

The problem is...most treatments are limited by the FDA. If a treatment is not FDA approved, doctors can not prescribe it. That is, unless you are in the hospice program (I think.) The hospice doctors can "do whatever they want."

Tammy has been having some digestive system issues lately. Last week, she was constipated for almost seven days. The nurses told us that Tammy's MS was causing the nerves in her digestive system to stop communicating with her brain. She wasn't able to have any bowel movements. The hospice doctor prescribed a shot that had been proved to stimulate the nerves that have been possibly damaged by MS. Tammy tried it for a few days but it didn't work. Her family prepared for the worst again.

The hospice doctor then tried another type of shot, because, quite frankly, what was the worst that could happen? Miraculously, after a visit from an angel, Tammy had another bowel movement. She "cheated death again." She says, "it worked and I got another day."

Tammy says that the hospice doctors need to "stay incognito so that no one can voice their opinions." In other words, they need to "keep the do-gooders out of it." The do-gooders are "the left-wingers who think they know what's right for you, and try to stop medicines that aren't FDA approved from being prescribed." The hospice doctors are able to try things that aren't medically approved. So, in a way, "all hospice patients are clinical trials." That's what she wants Marc to know about clinical trials.

The other message that needs to be delivered is to Kim Dolce, an MS advocate from the MS Connection Newsletter. Tammy wants to encourage Kim to fight to get Secondary and Primary Progressive MS eligible for hospice care. "The patients need to know that they have a safe, comfortable, pain-free way out." Hospice is what's keeping my mother alive right now, and every day we get with her is a gift.

Tammy notes that the process of advocating for MS is what led to the ODIS (Office of Disability Services) to accept MS as a disability, which led to patients like her being able to get things like handicap license plates.

If Tammy had not had the stoma a few months ago, she wouldn't have been accepted into the hospice program. The only reason she was accepted is because she had both MS and an ostomy bag, and she could not take care of both; she couldn't take care of herself. She "wished she was dead," and that's why hospice accepted her. My dad, Chris, says that the doctors "butchered" Tammy by removing her large intestine. However, Tammy thinks the doctors really did her a favor, because it's the only reason hospice accepted her into their program.

Here's my two cents: MS patients should not have to be butchered in order to receive the care they need to survive.

Most importantly, Tammy wants us to know that Chris is "phenomenal.... the best husband and dad ever."

And most importantly, I love my mom more than anything else in the entire world.