Learning to live with MS

MEEKER | Tisha Joslin Reiger comes out to greet me on her front porch with a warm welcome. She leans on a cane

and moves with the kind of painful caution you’d expect from an elderly woman. But Reiger is only 44.
“I had thought that after my kids graduated I had done my job, I’d raised my kids. I thought now I could move and go wherever I wanted to go,” she says, her eyes filling with tears. “I didn’t expect this.”
Reiger has lived in Meeker for 42 of her 44 years. Her two children with ex-husband Rodney Dunham are both away at college. Her daughter, 21, is in Nebraska studying to be a nurse. Her 18-year-old son is in Texas on a two-year livestock judging scholarship. He plans to transfer to Lubbock to study to become a veterinarian. Her pride in them is evident in her voice and the pictures that grace her home.
Two years ago in April she lost feeling in her toes on her left foot. That progressed to weakness on her entire left side. “I couldn’t pick anything up with my left hand without dropping it,” she says. Shortly thereafter, she started having trouble walking without falling.
“I was working out at Flat Tops Fuel. I would turn and my (left) leg would just go out from under me.” She’s fallen down her front steps several times, suffering a concussion in one fall. “I’ve fallen a lot,” she says with a wry smile.
Dr. Chris Williams at Meeker Family Health Center sent her to neurologists in Grand Junction for a diagnosis.
She’s had multiple MRIs and a lumbar puncture, among other tests, to confirm her condition.
In cases of Multiple Sclerosis (MS), the body’s immune system attacks the coating around the nerve fibers in the body known as myelin. The resulting scarring disrupts or damages the nerve’s ability to transfer information between the brain and the body. There is no known cause or cure at this time. Until 1993 there were no medications available for MS. Today there are 14 drugs that can slow the progression of the disease or reduce symptoms. Stem cell research has shown promising results for some patients.
The disease occurs more frequently about the 37th parallel, which is basically the southern border of Colorado. Internationally, Scotland has the highest incidence. It’s almost twice as common in women than men, and generally strikes otherwise healthy individuals in the prime of life, between 16 and 45. Symptoms can come and go, or change dramatically. About two-thirds of MS patients live normal lives, while the remaining one-third become physically disabled, according to the Rocky Mountain MS Center.
The disease is particularly difficult to diagnosis because the symptoms are so varied from person to person, and even from day to day. A definitive diagnosis can only be made by confirming the presence of lesions in at least two separate areas of the central nervous system (brain, spinal cord and/or optic nerves) and determining that the damage occurred at two different points in time. All other possible causes must be ruled out.
For Reiger, the rapid progression of her disease is concerning to her physicians. A year ago the physical symptoms—weakness, fatigue and a constant “pins and needles” feeling on her entire left side, for which she receives steroids and anti-inflammatory injections—began to affect her cognitive abilities.
“It got to the point where if I got tired or had a hard night (with pain) I couldn’t remember what I was supposed to be doing. I was making a lot of mistakes. People would tell me things and I wouldn’t remember. Even if I wrote things down I would either forget to go or I would show up on the wrong day.”
She now requires a home health provider who comes in several days a week to help her with personal care and household chores. She can no longer drive.
“I have people who look at me and say, ‘you don’t look like you’re sick.’ People are so unaware of MS and what it is.”
Six months ago she started having seizures, between two and five a week. Her mother, Peggy Wilkinson, has been staying with her daughter overnight since the seizures started.
“Her eyes roll back, she can’t speak, and she has tremors,” Wilkinson said.
On her most recent visit to Denver, doctors determined that the seizures are her brain’s way of responding to stress and long-term chronic pain. They are hopeful a change in medication will successfully stop the seizures and help with the nerve pain from the MS.
As if the symptoms of the disease weren’t enough, financial challenges add another layer of stress. Reiger’s unemployment ran out this month, and because of a glitch in the system, her first disability application was denied. She’s looking at two or three months with no income to speak of.
She’s trying to keep up with her home businesses selling Scentsy and doTerra products, but that’s getting more and more difficult.
She’s gotten some help from a national MS association, which is working to get a ramp built at her house and a walk-in-shower installed, and has a program to help with the costs of her medication, but they are limited in what they can do. An attorney with the association is helping with the disability application, which will require a hearing before a federal judge and a trip to Grand Junction.
While Medicaid covers her medical treatment, she has to provide her own funds to make the drive to Denver to see the specialists working on her case, which adds to the expense. She’s made four trips to Denver at the behest of her doctors in two months.
As we wrap up the interview on a snowy Friday morning, Reiger and Wilkinson are arguing (gently) about whether Reiger should go outside by herself to vacuum the car. Her mother is concerned that she could fall or have another seizure, and asks her daughter to wait until someone is there with her to help.
For a woman who has worked hard all her life to take care of herself and her family, being dependent on others for so many basic needs is challenging.
“I just wish I could go to work. I want to work,” she says.
“Your work right now is to take care of yourself,” Wilkinson replies.
A friend of Reiger has set up a GoFundMe page to help with her expenses at www.gofundme.com/ helping-tish-with-her-ms.