Marathon Update

In the week after Gabe’s death, we were asked on several occasions if we really preferred a donation to the Children’s Tumor Foundation (CTF) to flowers. We said yes. I’d like to publicly thank the following parties for responding with generous donations:

Mr. and Mrs. Scott Friedman

The Long Branch High School Band Parents Association

Ms. Dorothy Hendricks

Ms. Janice Del Rossi

Mr. John Charles Allen

Mr. and Mrs. Ken VanWingerden

The Art VanWingerden family

Mr. Nathan Smith, Ms. Connie Smith, Joshua Smith and Danny Smith

Mr. and Mrs. Tony Butcher

Ms. Ruth Ann Allen

Alica and Don Bean

(If there are others, I’ll add their names as I am notified.)

5/2/08 Additions:

Ms. Anne Kohut

Mr. Jim Pickel

5/16/08:

Mr. and Mrs. William Job

Stephen, Gail, Tamara and Daniel Corti

5/27/08:

Margaret and John Lavaggi

6/6/08:

Linda and Frank Allen

David Fry

Bob and Karin Gaspartich

9/20/08

Berniece and Seongbin Pak

10/21/08

Mr. John V. Andres

Mr. D. Davis

Mr. and Mrs. Dennis Stitz

 

 

 

The Children’s Tumor Foundation was a godsend to me when Gabriel was diagnosed with neurofibromatosis (NF) at 6 months old. It provided information and hope that research was being conducted into this little-understood, but common disease. I had not kept up with the foundation’s work in the past 10 years because NF seemed not to be a big part of Gabe’s life. 

My interest in the work of CTF was rekindled this year by an encounter with an NF patient, by a minimal increase in Gabe’s symptoms and by a scientific discussion of an NF researcher’s stem cell findings. Gabe’s brother Mike and I decided to enter the Long Beach Marathon to raise money for CTF. (Mike will be a cyclist and I will walk/jog.)

Amongst the many questions we’ve asked ourselves in the past three weeks is what role NF played in Gabe’s depression. Yesterday, I did an internet search to see if any correlation exists between NF and mental illness. This possibility had never been mentioned by any physician or other resource I encountered.  Here is a summary of what I found:

“Many childhood psychiatric and behavioural disorders have

been associated with NF1. These include social problems, anxiety

and depression, social withdrawal, aggressiveness, obsessive

compulsiveness, and somatic complaints (Varnhagen et al.

1988, Spaepen et al. 1992, Johnson et al. 1999). Children with

NF1 are thought to be at special risk for attention-deficit–hyperactivity

disorder (ADHD; North 1997), with rates of at least 33%

being suggested (Kayl et al. 2000). Hyperactivity, reduced ability

to concentrate, and also sleep disturbances were the most

common problems reported by parents of children with

NF1 (Wadsby et al. 1989). Difficulties might be persistent, as

Samuelsson and Riccardi (1989) reported that 33% of adults

with NF1 experienced mental illness and that sleep disturbance

(‘reduced sleep’) featured prominently.”

Developmental Medicine & Child Neurology 2005, 47: 237–242 237

We believe many factors contributed to Gabe’s depression, and will never know for sure if NF was one of them. Nonetheless, Mike and I are entering the Long Beach Marathon with renewed motivation. Mike has already recruited some friends to ride with him and I’ve solicited my first sponsor. So, now you know why these donations to CTF mean so much to us and why Mike and I are pressing ahead with the marathon.

Sponsorship information will follow at a later date. If you don’t want to wait, you can make a donation in Gabe’s honor today.

Racing for Research

 

The scene above is a favorite one when I’m out walking. It will become much more familiar as I train for the Long Beach Marathon. I begin today with a moderate Run/Walk Plan. The race takes place on October 12, 2008. My goal is to raise $1000 for Neurofibromatosis (NF) research. More info and updates to come.

But first  …

Did you know that NF is more common than Cystic Fibrosis, inherited Muscular Dystrophy, Huntington’s Disease and Tay Sach’s combined? More than 100,000 Americans have NF, which is either inherited or the result of a genetic mutation. 

The gene that causes NF was identified in 1990 by Francis Collins’ team (before he was director of the National Human Genome Research Institute). Collins’ book The Language of God is being discussed in considerable depth on Scot McKnight’s Jesus Creed blog. To date, there are five six posts archived under the Theology category.

[photo ©cas 2008, Irvine, CA]

Families “lost” in the trauma of mental illness

From an article about Britney Spears in USA Today:

 The National Alliance estimates about one in 17 Americans suffers from a serious mental illness, and mental illness affects one in five families. But as common as it is, families often are in the dark because mental illness is not on their radar the way cancer or heart problems are, Burland says.

Often, they don’t even know the symptoms.

That’s what happened to Sarah O’Brien, 30, of Takoma Park, Md., who was diagnosed with bipolar disorder 12 years ago after an incident in which she lost touch with reality. But she looks back and realizes she was exhibiting less obvious symptoms — from obsessively picking at her face to taking drugs — years before that.

Yet not even she recognized her own symptoms.

“I blamed everything on my parents or thinking I was at a horrible school,” says O’Brien, who now works with the National Alliance on Mental Illness to help others with mental problems. “I was always blaming stuff on something outside myself.”

No one else recognized it “because mental illness was not on someone’s radar screen — and because there was so much stigma. To people looking in, I was probably selfish, reckless and moody. The reality was that I was suffering inside. I wouldn’t wish it on anyone.”

Once a person or one’s family recognizes a potential problem, getting help is the next step. And it’s often a difficult one.

Often the person suffering from the mental illness does not understand that she or he is sick, says Ira D. Glick, a physician and psychiatry professor at the Stanford University School of Medicine.

“If you go break your leg and run into the doctor, the doctor will put a cast on it and give you medicine for it,” Glick says. “You say, ‘Thank you. Thank you.’

“In our field, when somebody has bipolar disorder or anxiety disorder or depression or schizophrenia, what do they say? What do most people say?

‘There’s nothing wrong with me. I don’t need this treatment.’ “

That is why it is so important to have family involvement, Glick says. “We see the family as a partner in the treatment team. It’s the patient, family and doctor all working together to make a diagnosis, set goals and carry out treatment.”

But because it is so difficult under most state laws to have a person hospitalized, families often have to wait until there is a crisis, Burland says.

“You must wait until they meet the criteria for hospitalization … in most states they have to become so gravely disabled that their life is in danger,” she says. “And then you have to call the police or you have to call the crisis team at the hospital to come into your house and take your family member to the hospital. And I want to tell you that it’s one of the most traumatic events that will ever happen to you.”

The ordeal is compounded because of the stigma associated with mental illness, Burland says.

“Families say this is the only illness in the world where you don’t get a covered dish. People don’t call, don’t inquire. The cultural understanding of mental illness is either that it’s their fault for getting ill, or it’s the fault of their family.”

Families often “beat themselves up horribly,” says Judith Orloff, author of Positive Energy and a psychiatrist and assistant professor of psychiatry at the University of California-Los Angeles. “They come to blame themselves. They think it’s their fault that this person is mentally ill.”

That is why it is so important to have compassion for them.

“Try to stay away from judging so harshly,” Orloff says. “Send any positive energy or thoughts.”

For more information, go to www.nami.org.