Simply the best site for information and inspiration.
Dr. Adam Mamelak and his friends
Dr. Mamelak is my friend too. After all, he’s been inside my head and looked around. He even plucked my pituitary gland out and I’m here to tell about it. I don’t think he’s one of the best neurosurgeons in the United States, I know he is THE BEST neurosurgeon in the U.S.
In a recent article in Discoveries, Cedars-Sinai, Fall 2010, “Who’s Who” it is Dr. Mamelak and his beautiful friends in the picture who are highlighted. As a person, I was 1 in 1 million who had Cushing’s disease, but Cushing’s is a common disorder in dogs. In, steps the talented Dr. Mamelak as he collaborates with the world of veterinary medicine. I don’t think Dr. Mamelak’s practice is going to the dogs at all. I’d refer to them as lucky dogs.
The picture in the article says Dr. Mamelak is holding Toby in his arms. In 2007, he held me. I thank him for that ~ his talent, his skill, and his warmth ~ he has enough to share.
Michelle with her precious, Kaiden ~ don’t you just love the picture! So sweet, so calm, but Michelle has gone through the dark passages of Cushings disease. Cushings is a rare disease, that if left unchecked, can be fatal.
It is not difficult to diagnose ~ by the right doctor.
I receive many E-mails of stories from people who have difficulties with the diagnosis part of Cushings. They go through months or even years before a proper Cushings determination is made. It shouldn’t be that way! I advise these people to get their facts on paper, know what they want as far as medical testing goes, do their research, and go to a doctor who specializes in Cushings and similar diseases ~ an endocrinologist is who I would recommend.
Back to Michelle and Kaiden: here is what she wrote to me, “I appreciate you spreading the awareness of this uncommon disease. I am 22 now,but I was diagnosed when I was 16. After 1 surgery and radio active therapy I finally got back to my pre-cushing weight,and now that I have had my first son a year ago this month I am starting to see some symptoms again. While going through all this I was in high school. I was 16 years old and working one day and woman asked how far along I was,the excess belly fat made me look pregnant! I was so ashamed, and I was even home bound from school, so I didn’t attend classes. It was truely hard to deal with!”
I replied back and told Michelle not to be ashamed but to get out in the world with her beautiful son and live. To know that everyone has bridges to cross in life and that she’s so lucky to be where she is with Cushings.
Cushings disease is most common in people when they are in their 20′s and 30′s. I was in my late 50′s before I was diagnosed but I feel that I was lucky too. I’m three years across that bridge now, with no pituitary gland, and I’m doing just fine. Yes, I’ve worked hard at it and yes, I’ve had a very supportive family. I also see my wonderful endo. every three months but it’s all worth it. Life is good.
Take another look at Michelle and Kaiden’s picture. They’ll be fine. Yes, she had Cushings and it wasn’t any fun. It might come back. She will need to see her doctor to insure that she continues to progress because it is HER body and Kaiden depends on her being there.
Our lives are like a quilt ~ they are made up of patterns that fit together into a lovely design. If we let it, that quilt can cover us with memories of both good and bad, but it will be beautiful.
My best to Michelle and Kaiden and to all of my “Cushie” friends. We belong to a small, tight circle and we must always drink from a glass that is half-full rather than …
Front page of the Iowa Falls Times Citizen, by Eric Mandel, September 8, 2010
Be sure to visit On the Road with Humpty Dumpty
- Temple at the Emmy’s
Autism has its night! Thank you Temple Grandin and the lights of Hollywood/HBO for giving autism a face, a name, a night to shine. “Temple Grandin” won eight Emmy Awards - Oh what a night it was!
Temple Grandin stood and waved from the audience as actors from the movie of her life won awards, then took the stage herself as the biopic Temple Grandin won the Emmy for best TV movie at the 62nd Primetime Emmy Awards ceremony on Sunday night.
Guide Autism
This month, Guiding Eyes for the Blind’s Heeling Autism program is in the running for a $250,000 grant from Pepsi’s Refresh Project. We are currently ranked 7th out of 415 – we need to be in first or second place to receive funding.
Heeling Autism dogs change the lives of children in almost miraculous ways. The dogs elicit social skills and emotions that other therapies may not. They keep children safe so that trips with their families become more enjoyable, and less stressful. Our dogs are provided absolutely free of charge and provide infinite hope in their new homes. Unfortunately, there is a two year waiting list for a Heeling Autism dog.
Can you help us encourage more votes? You can post this link – http://www.refresheverything.com/autismdogsforchildren – to your blog / FB page / etc. Your supporters have the potential to make a huge difference.
Thank you for your consideration; please let me know if you have any questions or if you’d like more information.
Warmest wishes,
Michelle
Michelle Brier
Events and Marketing Manager
Guiding Eyes for the Blind
611 Granite Springs Road
Yorktown Heights, NY 10598
The Therapy Dog
My writing friend, Judy McFadden, a member of the Henderson Writer’s Group, self-published her book Life with McDuff. She has had wonderful success and I congratulate her. Judy won the Angel Animal Network Contest AND McDuff is also being written as a Hollywood screenplay. Mc Duff will be right up with the ranks of Lassie and Rin-Tin-Tin. (Am I dating myself?)
“McDuff taught unconditional love, forgiveness, looking beyond appearances, nonresistance, and being of service to others. And, he didn’t stop – even after death.”
CONGRATULATIONS JUDY!
ADA 20 Years of Age
Autism Speaks was on hand to witness President Obama commemorate the 20th Anniversary of the Americans with Disabilities Act at the White House.
The ADA was significant to our family in the past as we litigated under it for our son’s rights. WE WON!
As parents of children and adults with autism, we must and shall always stand up for what is right ~ we will WIN.
June fourth is the third anniversary of my second surgery for Cushing’s Disease. This is monumental to me because my team of doctors at Cedar’s Sinai Medical Center’s Pituitary Center (where the surgery was completed) told me that I would be 100% back to normal by my three-year anniversary.
The second surgery, June 4, 2007, removed my entire pituitary gland, along with the tumor. I’m living proof that one can live without a pituitary. But am I back to normal – I like to think so but I know there are deficit areas that remain a bit foggy. Most Cushing’s patients are in their 20′s and 30′s, I was much older than that at the time of my initial diagnosis and subsequent surgeries. Thus, one would expect my recovery to take longer.
Because of this website/blog and written articles, I have received phone calls and E mail from other Cushing’s patients or people who suspect Cushing’s in themselves or a family member. The stories are sad ones and often fill with professionals who will not listen to them or who refuse to do the right testing in order to diagnosis properly. I offer advise but I know how lucky I was to have a doctor who recognized the characteristics of Cushing’s in me right away.
So on the eve of my third anniversary, am I 100% back? No. Physically, I tire easily and take power naps about three times a week. I don’t like loud, crowed places because it makes my head “full.” I can’t listen to more than one person talking at a time and really pay attention, and conversation often tires me out. I lost weight at first but have gained some back. I continue to have a word finding problem at times, especially if I’m tired. Because I’m a speech pathologist, I know how to substitute many words and try to “hide” this language disorder. I don’t plan to overdo too much in any given day ~ if I do, I pay for it the following three or four days. I continue to get those deep, deep chills that only four or five blankets and a nap can cure – but not nearly as often.
BUT, when I compare where I was three years ago, I can only put the palms of my hands together, close my eyes, and thank God for my family, my faith, and my courage to pursue so desparately those things I knew I had to in order to get to where I am today. I’d put me at about 90%.
I’ll leave you with this thought because I like it and it says a great deal about anyone who has dealt with any disease:
“What lies behind us, and what lies before us, are tiny matters compared to what lies within us.”
~Ralph Waldo Emerson
April is National Autism Awareness Month ~ Do something about it!
Endonasal Approach to Pituitary Surgery
My surgeon, Dr. Adam Mamelak, from Cedars-Sinai Medical Center wrote a great article for their recent newsletter about pituitary surgery. He discusses transphenoidal pituitary surgery and the two most commonly used approaches: sublabial and endonasal. I underwent the endonasal approach for my two surgeries nearly three years ago. I did not experience any pain with this approach. (I understand that the sublabial approach can be very painful and it is often necessary to pack the nose for up to three days.) Lesson here is to be sure that your pituitary surgeon is very skillful and familiar with both approaches before you decide what is best for YOU.
Cushing’s disease occurs in about 1-2 people per million! However, it is extremely common in dogs.
