Baxter psychologist becomes ALS advocate after diagnosis
JP Whalen knows time isn't necessarily on his side.
The psychologist worked for almost a decade at Nystrom & Associates in Baxter but in December of 2015 he was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. He retired from Nystrom & Associates last month.
The average life expectancy of a person with ALS is two to five years from time of diagnosis according to the ALS Association, a national nonprofit.
"JP has always been an advocate for the clients that he's served ... and he's been very active in local advisory councils regarding mental health issues," said Sue Vanek, community outreach supervisor at Nystrom & Associates.
He provided outpatient therapy and psychological testing, and supervised the adult rehabilitative mental health services program before he became an advocate for himself and others with ALS.
"He is having some struggles with the ALS and the medications that he's taking, and the skill set that we saw him have in employment he's applying in his personal life and advocating for himself to make sure his medical needs are met," Vanek said.
Lou Gehrig's disease
Whalen convinced the Rochester-based Mayo Clinic to allow him to receive intravenously the drug Radicava at Essentia Health-St. Joseph's Medical Center in Brainerd to treat ALS.
"He was the first person in Minnesota to receive the medication ... and he might be one of the firsts in the United States," Vanek said.
Amyotrophic lateral sclerosis, or ALS, is a progressive neurological disease that destroys nerve cells and causes disability, according to the Mayo Clinic.
Often called Lou Gehrig's disease, after the famous baseball player who was diagnosed with it, ALS is a type of motor neuron disease in which nerve cells gradually break down and die.
Whalen was diagnosed two years ago with ALS at the Mayo Clinic. The 66-year-old husband and father lives in Baxter.
"I thought that I had a torn rotator cuff behind my right shoulder, so I went to an orthopedic surgeon to see if I needed surgery," Whalen said of his initial symptoms. "He did an MRI. He said that I needed to see a neurologist, that I did not have a rotator cuff problem."
According to the Mayo Clinic: "ALS often begins with muscle twitching and weakness in a limb or slurred speech. Eventually, ALS affects control of the muscles needed to move, speak, eat and breathe. There is no cure for ALS and eventually the disease is fatal."
"My wife helps me get dressed. She washes my hair. ... Basically, we are a team. She helps me with everything that I can't do," he said of his wife Donna.
More than 6,000 people in the U.S. are diagnosed with ALS each year, and it is estimated more than 20,000 Americans have the disease at any given time, according to the ALS Association.
"I was familiar with Lou Gehrig's disease. I knew about Lou Gehrig, I knew about Kent Hrbek's dad," Whalen said of the New York Yankee and Minnesota Twins ballplayers, respectively. "But I didn't really know anyone personally that ever had the disease."
Half of all those affected with ALS live at least three years or more after diagnosis. About 20 percent live five years or more, and up to 10 percent will survive more than 10 years, according to the ALS Association.
"I have a doctorate degree in rehab psychology, and one of the things I learned from my education and my experiences is I've seen that once a person accepts what they are dealing with it makes a huge difference," Whalen said.
"And I accepted it. I didn't really have a problem. I just thought, 'OK, we have to move on from here.' But the experience I had with my wife? She didn't accept it very well. She was angry, she was sad, but we just kind of talked through it."
Symptoms include difficulty walking or doing normal activities; tripping and falling; weakness in legs; hand weakness or clumsiness; slurred speech or trouble swallowing; muscle cramps and twitching in arms and tongue; and difficulty holding the head up or keeping good posture.
"I'm rather fortunate because my symptoms are only in my arms. ... I don't have any problem breathing or swallowing, but my arms are toast if you will. But the new medication that I'm taking now helps me a lot with my arms," he said of Radicava, which is administered by a chest port.
"I worked prior to it becoming available in August or September, I contacted the infusion center at St. Joe's and asked if they could do it. The infusion center manager contacted the 'home office' for Essentia Health in Duluth and asked if they could do it, and they got the OK to do it."
Adverse effects of the drug by MT Pharma America Inc., a U.S.-subsidiary of Mitsubishi Tanabe Pharma Corp., include bruising, gait disturbances, headache, skin inflammation, eczema, problems breathing, excess sugar in urine and fungal skin infections.
"The infusion center manager contacted the pharmaceutical company that developed the drug on a Wednesday, and they had a representative at St. Joe's on Friday training the nurses at the infusion center how to use it ... and the following Wednesday I started the medication," he said.
"You have to be able to advocate for yourself. If I hadn't done what I did, I would have not gotten the medicine."
Living with ALS
Physicians are unsure of the reason for the cause of the disease, but some cases are inherited—between 5 and 10 percent—according to the Mayo Clinic.
"Through the advocacy that my wife Donna—she was the principal who opened up the Forestview Middle School (in Baxter)—and I want to do, my wife was contacted on Facebook by a couple trying to find out if we were the Whalens that had ALS and the medicine," he said.
The recommended dosage is 60 mg over a 60-minute period with an initial treatment cycle with daily dosing for 14 days, followed by a 14-day drug-free period, and subsequent treatment cycles with daily dosing for 10 days out of 14-day periods, followed by 14-day drug-free periods.
"We're going to meet with them later on this month and try to help them," he said. "The woman was diagnosed at the Mayo Clinic in March, so they are just beginning to deal with it."
Whalen said he would provide support to others with ALS and welcomed emails sent to him at firstname.lastname@example.org. Or people can visit the website of the ALS Association-Minnesota, North Dakota, South Dakota chapter at webmn.alsa.org.
"I was even given the prognosis of three to four years—and I'm on my third year right now," Whalen said of his life expectancy after his ALS diagnosis. "We've kind of decided that I'm not dying from ALS ... that I'm living with it. ... I'm not going to give up."