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Couple trade two wheels for three as they battle multiple sclerosis

VINTON – Heidi Lillibridge faces an uncertain future after multiple sclerosis invaded her life.

A wife and mother of two, Heide’s always been active. She and her husband, Lance, have enjoyed motorcycles for many years.

However, her disease affects her nervous system, causing her to react a split second after Lance leans into a corner. It’s something that once happened simultaneously, instinctively.

And, it’s dangerous, challenging Lance’s ability to control the motorcycle.

“Last year for our anniversary, we went for a motorcycle ride and it didn’t go so well,” said Lance. “It was just uncomfortable.”

“Heidi’s balance wasn’t so good and we knew something was going on but we didn’t know what. We had been going to the doctor and trying to figure it out.”

In November, Heidi was diagnosed with Primary Progressive Multiple Sclerosis. After doing a little research, Lance knew the motorcycle riding was most likely relegated to the past – just for safety reasons.

In the months since Heidi’s diagnosis, Lance pondered what should be done with the motorcycle and the rides they so much enjoyed.

“She said one day that we are going to keep on keeping on with what we are doing – the farming and everything and just a positive attitude,” said Lance.

“It was very encouraging to hear her say that.”

Lance thought about it for a while and decided they could run on three wheels instead of two.

In the course of events, Heidi learned of a woman in Des Moines also suffering from MS named Karrie Anderson who had formed a foundation called MS Moments. Lance and Heidi attended an annual event of the group and met Anderson. MS Moments helps people with MS try to maintain a good lifestyle through exercise, gym memberships, massage and sharing information.

Heidi then became motivated about fund raising, helping the MS Moments cause and helping other people.

Heidi wanted to have a motorcycle ride. This left Lance amazed and puzzled. Finally he decided a motorcycle ride was possible, but they could not ride one. That’s when he decided to get the trike. He contacted an old friend from Oelwein, Cody Angle, who worked at Metro Harley Davidson in Cedar Rapids.

“We are going to ride, and we are going to ride a trike,” said Lance. “I am not a trike guy but I will be a trike guy for Heidi.

“If we are going to do this, and we are going to do this motorcycle ride, let’s do something that is going to be meaningful for her, but also for the MS cause.”

Lance wanted something out of the ordinary. He worked to create a one-of-a-kind creation.

Lance didn’t say anything to Heidi about his plans, hoping to surprise her.  The trike was customized with a special paint job and lettering to make the trike a one-on-a-kind. Lance said orange is the color signifying Multiple Sclerosis, but he did not like the bright orange often used. He worked with Tom Hanson of Tom’s Auto Restoration to create an orange that he liked.

All of this was being done without Heidi’s knowledge. That all came undone when Lance responded to an email from Karrie Anderson that had also gone to Heidi. Lance included a note about the trike, unwittingly also sending that to Heidi.

“So, I call him and say ‘what is going on with this trike?’’ said Heidi.

Lance had to fess up, responding “How in the h### do you know about that?” according to Heidi.

She told him about the email to Karrie and that her email address was listed on it also. Lance told her he had to go and later explained what was happening. The trike was presented to Heidi at Metro Harley-Davidson several days ago and the Lillibridges went on their first ride over the weekend.

Heidi’s problems began at the Party in Pink 5K five years ago when she was unable to complete the distance. She was unable to lift her leg.

After years of searching – eight doctors and countless scans, MRIs and other procedures, the answer was discovered late last summer.

Fifteen percent of those diagnosed with MS have the Primary Progressive, the type from which Heidi suffers.

The disease leaves Heide weak and she often relies upon her children, Tess, 14, and Ty, 12, to run errands around the house for her. It also affects her balance and causes her weakness in her right side.

“My walking is the most obvious,” said Heidi.

She can no longer walk straight and her speech can be slurred.

Sometimes she has to tell people that she’s not under the influence of alcohol, but suffers from MS.

“I have to kind of concentrate on what it is that I am trying to do from Point A to Point B,” said Heidi. “I don’t talk to people while I am walking because I am concentrating on keeping everything tight and in, where I am walking and one foot in front of the other.”

Some people suffering from Primary Progressive MS are confined to wheelchairs. It affects the spine more than it will the brain, said Heidi. The type affecting Heidi only gets progressively worse. It never enters remission.

MS attacks the myelin sheath that wraps around the spinal column as a protective layer – kind of like a lamp cord with a protective coating.

“That signal that my brain is sending to my legs is shorting out,” said Heidi.

Heidi just began a course of treatment with the only drug available to treat Primary Progressive MS, which was approved by the Food and Drug Administration just over a year ago. It is administered by IV infusion and costs $68,000 every six months. The insurance company pays 20 percent.

“Twenty years ago when one was diagnosed with MS, there was not a lot,” said Heidi. “Basically, it was go home and learn how to live with it.”

The future is unknown.  After learning of the diagnosis, Lance and Heidi spoke with their children.

Heidi told them she was not going to die, but it was going to change their lives. And it has.

But, Lance and Heidi and the children are not going to let it get them down.helping other people.

Heidi wanted to have a motorcycle ride. This left Lance amazed and puzzled. Finally he decided a motorcycle ride was possible, but they could not ride one. That’s when he decided to get the trike. He contacted an old friend from Oelwein, Cody Angle, who worked at Metro Harley Davidson in Cedar Rapids.

“We are going to ride, and we are going to ride a trike,” said Lance. “I am not a trike guy but I will be a trike guy for Heidi.

“If we are going to do this, and we are going to do this motorcycle ride, let’s do something that is going to be meaningful for her, but also for the MS cause.”

Lance wanted something out of the ordinary. He worked to create a one-of-a-kind creation.

Lance didn’t say anything to Heidi about his plans, hoping to surprise her.  The trike was customized with a special paint job and lettering to make the trike a one-on-a-kind. Lance said orange is the color signifying Multiple Sclerosis, but he did not like the bright orange often used. He worked with Tom Hanson of Tom’s Auto Restoration to create an orange that he liked.

All of this was being done without Heidi’s knowledge. That all came undone when Lance responded to an email from Karrie Anderson that had also gone to Heidi. Lance included a note about the trike, unwittingly also sending that to Heidi.

“So, I call him and say ‘what is going on with this trike?’’ said Heidi.

Lance had to fess up, responding “How in the h### do you know about that?” according to Heidi.

She told him about the email to Karrie and that her email address was listed on it also. Lance told her he had to go and later explained what was happening. The trike was presented to Heidi at Metro Harley-Davidson several days ago and the Lillibridges went on their first ride over the weekend.

Heidi’s problems began at the Party in Pink 5K five years ago when she was unable to complete the distance. She was unable to lift her leg.

After years of searching – eight doctors and countless scans, MRIs and other procedures, the answer was discovered late last summer.

Fifteen percent of those diagnosed with MS have the Primary Progressive, the type from which Heidi suffers.

The disease leaves Heide weak and she often relies upon her children, Tess, 14, and Ty, 12, to run errands around the house for her. It also affects her balance and causes her weakness in her right side.

“My walking is the most obvious,” said Heidi.

She can no longer walk straight and her speech can be slurred.

Sometimes she has to tell people that she’s not under the influence of alcohol, but suffers from MS.

“I have to kind of concentrate on what it is that I am trying to do from Point A to Point B,” said Heidi. “I don’t talk to people while I am walking because I am concentrating on keeping everything tight and in, where I am walking and one foot in front of the other.”

Some people suffering from Primary Progressive MS are confined to wheelchairs. It affects the spine more than it will the brain, said Heidi. The type affecting Heidi only gets progressively worse. It never enters remission.

MS attacks the myelin sheath that wraps around the spinal column as a protective layer – kind of like a lamp cord with a protective coating.

“That signal that my brain is sending to my legs is shorting out,” said Heidi.

Heidi just began a course of treatment with the only drug available to treat Primary Progressive MS, which was approved by the Food and Drug Administration just over a year ago. It is administered by IV infusion and costs $68,000 every six months. The insurance company pays 20 percent.

“Twenty years ago when one was diagnosed with MS, there was not a lot,” said Heidi. “Basically, it was go home and learn how to live with it.”

The future is unknown.  After learning of the diagnosis, Lance and Heidi spoke with their children.

Heidi told them she was not going to die, but it was going to change their lives. And it has.

But, Lance and Heidi and the children are not going to let it get them down.