Archive for April, 2012

38

Side Effects

I have always felt that my MS medicine has really helped me. On the other hand, I have also been afraid of the side effects that come along with the benefits. Some MS medications have even been found to have deadly effects. My worry is that I am taking so many drugs that the negative damage will overshadow the positive returns. I have learned to live with most of the minimal secondary effects but recently my fear of a more resilient side effect came to fruition.

A short time ago, I was diagnosed with Glaucoma. I was prescribed eye drops and instructed to administer one drop in each eye nightly. A month went by with no problems. Then one day I woke up and my eyelids were covered with an itchy pimply rash. It scared the daylights out of me. When I first saw my face I screamed. I began to think,”Am I contagious?” I have always had eye problems. The worst was when I lost my sight for two days, so I am very sensitive to any type of irritation around my eye area.

After seeing my face, I gathered myself together and headed to the nearest pharmacy in search of a quick fix but nothing seemed to work. I am currently on eleven different MS related drugs. Yes 11! For two hours, I blamed every one of those pills before I remembered I was taking the Glaucoma eye drops. I called my Optometrist and he said that my skin inflammation was highly unusual but recommended that I discontinue using the eye drops. As I hung up the phone, I smiled and couldn’t help but think...at least it’s not MS this time!

Because of the doctor’s skepticism, I wasn’t 100% sure if the eye drops caused the break out. The thing is, it could have been caused by any of the drugs that I am currently taking and that is what scares me. Luckily only two days after stopping the eye drops the bumps were gone.

I guess living with side effects is a part of my life for the unforeseeable future, I just hope that it remains minimal.

77

Miracle Diets

I’m sure I’ve said this before, but I’d just like to touch upon one of my most cumbersome symptoms.

Fatigue.

Of course the mobility issues are huge as well, but no one should have to feel like this after sleeping 10 to 12 hours a night! I am still tired. My thinking is labored and endurance nonexistent. Fatigue engulfs and morphs my life and attitude. I am taking medication for it. As a matter of fact it seems to really be helping. The thing is I can’t seem to find it! The pharmacies are out. Can you imagine?

So, when I spoke with my doctor he mentioned starting me on a generic amphetamine similar to Adderol. Also known as “uppers” on the streets! My word. Am I gonna become addicted to drugs? But then again I probably already am! I feel like I’m at my wits end. Ready to try anything. But, I have to admit I’ve never really changed my diet for Multiple Sclerosis. I’ve been hearing about two diets in particular. The Swank Diet and The Wahls Way. Both would be very dramatic changes for my husband and I. Though drastic, it seems worth it if it helps with my fatigue like they boast. The thing is I would hate to set myself up for a huge let down.

Both diets claim to help. The Swank has a Swank MS Foundation online. It’s pretty life changing. Take a look at this:

QUICK REFERENCE for the Swank diet

*Saturated fat should not exceed 15 grams per day
*Unsaturated fat (oils) should be kept to 20-50 grams per day.
*No red meat for the first year.
*After the first year, 3 oz. of red meat is allowed once per week.
*Dairy products must contain 1% or less butterfat unless otherwise noted.
*No processed foods containing saturated fat.
*Cod liver oil (1 tsp. or equivalent capsules) and a multi-vitamin and mineral supplement are recommended daily.

Now guys this would be pretty hard for me to pull off! Especially, not without the help of my husband.

The other diet the Wahls Way is pretty life changing as well, but has an intriguing back story. Dr. Terry Wahls not only created this stringent regimen but has Secondary Progressive M.S. herself! I hope you clicked on the link and heard her story. It’s mind blowing! Especially since I have secondary progressive M.S. as well. I’m not going to get into the specifics of Wahls Way but trust me when I say it looks pretty darn hard! But look at the diets and you tell me what you think. I’m so vulnerable right now I just might fall for anything. I just think if this diet craze thing were true, our doctors would have told us, right? Or are they holding back on us? Because as I see it, turning this into a nutritional thing pushes them right out of the ($)equation. But on the other hand, these other guys want us to buy($) into their ways too!

What’s a girl to do?

53

There Go I

This week I am going to do something a little different. Easter Sunday, The New York Post ran a story about a man ending the life of his wife who had MS. The article was so poignant that I felt everyone who is affected by MS should be informed about this story. I hope that neither myself nor anybody else will ever be put in this position.

B’klyn man shoots helpless MS-stricken wife, then himself
By LARRY CELONA, GEORGETT ROBERTS and PEDRO OLIVEIRA JR.

For years, Vincent Tropeano watched helplessly as multiple sclerosis ate away at the body of his frail wife, Elaine. First she needed a cane, then a wheelchair. Eventually she became a prisoner in her hospital bed on the first floor of their Brooklyn home, where she suffered the indignity of no longer being able to use the bathroom. It all became too much to bear yesterday when the 74-year-old husband saw their health worker changing his wife at around 7 a.m. He completely snapped.

“Do you want to go out like this?” a naked Vincent asked his wife as he wielded a .32-caliber derringer, a law-enforcement source said.

The home aide, Rose Hall, fled the house under Vincent’s orders. She called 911 in tears. By the time officers arrived at the Bergen Beach home, the couple was dead — Elaine face up with a gunshot to the head and Vincent on the bedroom floor with a self-inflicted wound, sources said.

“After being married that long, you would think they would be in love,” said Hall, 56, who had been working for the Tropeanos for only two days. “But if he could kill her like that, I couldn’t call that love,” Hall told The Post.

Neighbors said the couple had been married at least 35 years, with two grown sons, Vinny and Steven. Their East 69th Street home is filled with pictures of children and grandchildren.

“She was his whole world,” said Nathan Bershadsky, who had known them for 11 years.

The couple used to enjoy traveling together but Elaine began to wither away from multiple sclerosis about 20 years ago. Usually talkative and friendly, she went from a cane to crutches, and then could no longer walk and was bound to a wheelchair. This year, Elaine’s condition worsened, and she entered a rehab facility. Vincent pulled her out a month ago because he wasn’t happy with her care there.

“He always had a smile on his face. I never heard him complain,” said Sydelle Mann, 74, who had known the Tropeanos for more than 35 years. “Oh, my heart is broken. This is what you call a love story.”

Just last week, Vincent built Elaine a ramp in front of their home so Hall could take her outside. “He was committed to her. You could see the love between them,” Mann said. Vincent always stayed within shouting distance in case his wife needed him, Bershadsky said. Despite his commitment, Vincent was worried about her. “He would say there’s nothing that’s ever going to change, it’s only going to get worse,” Bershadsky said.

Vincent had been telling his kids recently that he was going to kill her and himself, sources said. He was overwhelmed because Elaine was no longer able to handle their bills, the sources said. On Tuesday, cops seized eight rifles and two shotguns from the home, and he was issued a summons for not having a permit.

On Friday, Vincent was “distraught and very nervous,” said neighbor Lou Drucker, 80. “He kept walking around, back and forth, in circles. I knew there was something wrong with him.”

Additional reporting by Rebecca Harshbarger and Frank Rosario
pedro.oliveira@nypost.com

Original story: Read More in the New York Post

If you ever find yourself getting close to this situation please seek help.

There but for the grace of God go I.

27

My Final Four

The Men’s Final Four, a college basketball championship game, was held in New Orleans this year. There were many activities that surrounded the final game which actually is this coming Monday. By the time this post is released the game will have been played and won (I predict Kentucky). I just wanted to drop this little note now while my experience is fresh.

Typically, I don’t mind being seen in public, so I don’t shy away from these sorts of activities. I don’t particularly like being pushed in my wheelchair among a lot of people walking around me, but I think getting out is good. They say social interaction is a fundamental human requirement, so out I went. As I was in the midst of kids, families and fans enjoying the sights and games I just tried to appreciate the moment despite how I really felt. To be honest, I did meet some sports celebrities that were pretty nice.

As we rolled around I saw a little girl also in a wheelchair. I couldn’t help but wonder why she was relegated to a chair. I thought about how she must feel amongst her joyful walking peers. I pondered how long she had been wheelchair bound. Then, immediately I felt grateful for the memories I have retained. Although, she did seem content in her own right.

A few minutes later I saw something that was truly extraordinary. It was a man in a motorized wheelchair that had a respirator on it to assist him with breathing. He sucked on a straw-like piece that allowed him to breath. I would equate it to what Christopher Reeves from Superman had. It sounds kind of creepy, but if I had been pushing myself I would have likely followed him. I found it amazing just how comfortable he seemed in his own skin. From the quick glimpse I had of him I found it inspirational that he would be at such an event.

Often, people call me inspirational too. I appreciate it, but don’t know exactly if I deserve it. All I’m trying to do is make it through the day the best way I know how. Probably, the same way we all do. We may not all have the same Multiple Sclerosis monkey on our back, but I’m almost certain we all have something to deal with. So my advice to all, including myself, is to continue pressing on and make the best of life with what we have.

At the end of the day, though tired, I was pretty glad I went.