Valley woman suffers rare disease |

Valley woman suffers rare disease

by Merrie Leininger

Losing memory and motor skills are something we all fear as a part of old age, but Tina Logan is experiencing these things now and probably will never get to reap the benefits of living past her 30s.

Logan is just trying to savor her remaining time with her husband, Douglas County Sheriff’s Investigator Keith Logan, and their two children, Kacy, 12, and Trevor, 8. But daily, as she loses more of her independence and as the bills pile up, it becomes more difficult.

Logan has been diagnosed with Huntington’s Chorea, a hereditary, degenerative brain disease. It usually, as in Logan’s case, begins in mid-life, when cells in the caudate nucleus of the brain begin to die.

And it never stops. From there, intellectual capacity, emotional control, balance and speech deteriorate. Chorea, or involuntary movements, is nearly always a symptom as well.

“She is at 10-15 percent of her ability when I first met her. It is going faster than I thought it would,” Keith said. “She graduated with a 4.0 GPA. Now she can’t pull back things she knows and we know she knows. She can’t walk through the house – she could dance for hours and never miss a beat. Now she can barely make it through half a slow dance. Those things are gone and that is tremendously taxing, emotionally.”

Every child of an affected parent has a 50 percent chance of inheriting the gene.

Tina, 36, said it is rampant in her family, but for years after her second boy was born, she couldn’t get a straight answer from doctors.

First of all, said Keith, it is very rare. Only 30,000 people in the United States are diagnosed with the disease, so many doctors don’t recognize it. Tina and Keith both recognized something was very wrong, though.

The first symptoms appeared in 1991, but they could not determine a source. Doctors were looking for pinched nerves, Tina said. Then, two years ago, a doctor said she needed to test for Huntington’s, but one of the only hospitals that can do the test, wouldn’t.

“We had to get the Huntington’s Society involved. They said they don’t like to do the test because there is no cure and no hope,” Tina said.

In January she got back the results of the test. Tina takes drugs to suppress the pain, the depression and the electrical shocks that send her limbs flying out uncontrollably.

Tina said one of first symptoms is loss of feeling in some areas and hypersensitivity in other areas.

“You can prick me with a needle all over the front of my body and I can’t feel it. But you just barely touch me on the back and it sends me through the roof. My back is in constant spasm,” she said.

Tina said for a while, she was a prisoner in her home. She became afraid to go out by herself because her limbs would lock up and she would have to call Keith to come and pick her up.

Now, she uses a motorized scooter to get around outside and a walker at home.

“It is very liberating. Now I can get some quality of life back. And with the help of this community, I can get more,” she said, referring to the outpouring of support she received after attending a Carson Valley Chamber of Commerce meeting.

Since then, Sertoma members have built a ramp and a path so she can get out her front door with the scooter, and the state vocational rehabilitation division has loaned her a lift to put the scooter in her van.

Her friends from the Soroptimist International of Carson Valley and the Douglas County Sheriff’s Association are helping, too. They are sponsoring a benefit that will be held at CVIC Hall at 7 p.m. June 23 to raise money for more house renovations and to pay for medication and doctor’s visits that insurance won’t cover. Minden town engineer Bruce Scott, with RCI Engineering, is paying the cost to rent the hall so all of the money will go to the Logans.

Keith said they have had to pay $18,000-$20,000 each year for the past two years for medication both for Tina and for Kacy, who has an undiagnosed neurological problem. His doctor is in Los Angeles while Tina’s is at U.C. Davis. The insurance won’t pay for their travel expenses.

Tina’s unreliable health – one day she feels great, the next she can’t speak or get out of bed – have forced her to give up all but one of her bookkeeping and paralegal clients. Once she has to give that client up, vocational rehab has to take away her scooter.

She said this semester probably was the last time she would teach the legal assistants class at Western Nevada Community College.

With only one income now, the family has reason to worry, but both Keith and Tina – who have always been focused on their children – continue to think little about themselves and look to Trevor and Kacy.

Keith, who still coaches his sons’ baseball team, said they try to remember not to ignore Trevor in the midst of Kacy and Tina’s struggles.

Tina said she would rather give up her work, although it means a further loss of a piece of who she was before this disease.

“I want to spend the rest of my time with my children. I’m going downhill very quickly and want to spend what I have left on my kids and creating good memories and taking them places and showing them things rather than doing things that are just for me,” she said.

Tickets for the benefit are $25 a person and cover hors d’oeuvres and coffee. Beer and wine will also be for sale. Tina will be selling her collection of Beanie Babies – over 200 of them. Legends of the Faith, a local company which sells bean bag bears with spiritual sayings on them, is also helping. The bean bag bears will be on sale in businesses all over town and half the proceeds will go to Tina.

A silent auction and raffle will be held at the benefit. For tickets, call Elaine Agnason at 782-7282 or Susie Straker at 267-1652. To donate items for auction or raffle items, call Sendi Stockle at 265-5078.