To Russia in hopes of halting MS

Times Reporter  

 

No one can ever know how painful and devastating it is to live with Multiple Sclerosis (MS) unless they have it, or have lived with a loved one suffering from the disease. 

MS is an inflammatory disease. It damages the myelin of the spinal cord and brain. It is often referred to as a snowflake disease, since no two patients have exactly the same symptoms, or the same progression. There used to only be one result for a person with MS, no matter the type, and that is eventual homecare support and being bound to a wheelchair. 

Two Strathmore friends and MS sufferers are hoping to change their fate this summer. Chad Tashlikowich and Kris Hinz met after Tashlikowich was diagnosed with Primary Progressive MS. Their kids have played ringette together for quite a few years. A friend of Hinz’s told her about Tashlikowich when he was first diagnosed and everything started to fall apart. 

She called him and has been one of his biggest supporters, someone he could talk to and relate to, and someone who understands what he is going through, his thoughts and his fears about his disease, since. 

Hinz was diagnosed with Relapsing Remitting MS 11 years ago. 

“I was diagnosed 11 years ago. I had fatigue and some numbness, but mostly the fatigue,” said Hinz. 

It was just over a year after her second daughter had been born.

“You’re kind of thinking I’m just tired, but prior to that, probably 10 years, I had some numbness that was very short-lived so it was never investigated, but it was probably then that it started.”

Eventually she was sent for an MRI, which conclusively confirmed she had MS. 

In the beginning most people wouldn’t even know she had anything wrong.

“At the beginning I would have a relapse and I would have the numbness and all that stuff, but then it would go away for months at a time,” said Hinz. 

“Then I only had sensory issues, but never any issues with strength or weakness, balance, none of that until three years ago. Then I had a flare up that affected my leg, making it heavy.”

With the last two flare-ups Hinz’s strength, mobility and balance have been affected. 

It will be three years this coming November since Tashlikowich was diagnosed with PPMS. 

“Looking back there’s a lot of little things that I equate now. Really my biggest dilemma was my golf game went … and I couldn’t figure out why,” said Tashlikowich. 

His first symptoms were the urgency to go to the bathroom all the time. Fatigue also weighed heavily on him, and still does. When cutting the grass he would see white spots in front of his eyes, and would be tired after. Then it got to the point that he would cut the grass and then head inside, straight to the couch to lie down and nap. 

“It changed overnight, one time he would come home and do all this stuff after work and then almost immediately he would come home, lay on the couch and be out instantly,” said Wendi Tashlikowich, Chad’s wife. 

“I was doing lots of long hours at work too then and it’s so easy to just say, oh I was tired from that, fatigued from that. I’m getting older so I was just figuring I am getting old,” said Chad. 

Ten years ago Chad had lost his leg in a motorcycle accident, and so he attributed his balance issues to that. A few years ago, though, he and Wendi had gone to Las Vegas and he had a hard time walking in a straight line. No alcohol was involved, and he remembers trying to tell his leg to move and it just wouldn’t. As soon as they got back from the trip Chad had an MRI and that’s when they found evidence of MS. 

“He had 100 lesions in his brain and 70 in his spinal cord which made them think that he’s probably had it for six to eight years prior,” said Wendi.

The symptoms at first were fairly manageable; he could still drive and didn’t find most of them too hard to cope with. That has changed drastically over the past two years.

“I don’t walk. I avoid anything that could make me walk or go upstairs, and I don’t get to drive anymore. I am always going to the bathroom,” said Chad. 

He has vision problems, brain fog and his memory has been affected. Some of the lesions on his brain are also affecting his emotions, and he can go through a range of every emotion in a matter of minutes at times. 

With Hinz, any day she could have a flare up that turns her RRMS into Secondary Progressive MS. 

On March 9 the Tashlikowich’s watched a special on 60 Minutes about Kristy Cruise, a 35-year-old mother from Australia who also suffers from MS. Cruise went to Russia for Hematopoietic Stem Cell Transplant (HSCT), and the results were astounding. The procedure halted the progression of her MS, and was a last shot at trying to salvage her life with her family. 

After seeing the segment, and doing some research, Tashlikowich and Hinz applied to travel to Russia for their own shots at trying to halt the MS progression.  

“It is the only scientifically proven thing for MS. All of the disease modifying drugs and everything else, none of it is proven to fix it. If you talk to people who have gotten it done, it is referred to as a cure,” said Chad. 

“Right now if I hadn’t decided to go to Russia I have a zero per cent chance of things getting better, and at the rate things are declining I suspect my mom would be wiping my (butt) by the end of the year, so it was kind of a no-brainer for me.”

Eighty per cent of the people who have had the HSCT treatment have had positive results. Russia has been successfully using the treatment for MS for over eight years. 

“It has stopped their MS in its tracks. It doesn’t reverse the damage it’s already caused, so Chad probably won’t walk again, maybe he will have better balance so he will be able to walk better, but any spinal cord damage that’s already occurred, stem cell treatment doesn’t fix that, but it stops it in its tracks,” said Wendi.

“There’s nothing to say that Chad and Kris won’t be in that 20 per cent, but it’s a $50,000 gamble you can’t afford not to take.”

There are people who have symptoms caused by inflammation and there are some who, once their MS is halted and that inflammation resolves, begin to see minor improvement. 

“As soon as it affected my mobility I was like okay, I’ve got to do something. I don’t like it when my world gets small, and I have to think about everything like how far do I have to walk to get into Costco or whatever, and if I have to walk across a huge parking lot to get in there then I am almost done before I get in there,” said Hinz. 

She said for her the symptoms can be random, she can be going full bore in the morning and then all of a sudden her leg will give out, or her vision will go dull and she knows she has to slow down. She used to work as a nurse in the emergency ward, but had to quit her job due to the disease.

“It’s the not knowing that’s the killer part, that’s probably why the depression and stuff too. If you don’t know how your afternoon or tomorrow is going to go and you don’t really want to make plans because of that, you can’t think of what you’re going to do ever,” said Chad. 

There are a series of steps that will take place once the two land in Russia. Treatment will begin with MRIs, blood work and basic testing to ensure they are healthy enough for the procedure. Next they will go on stimulation drugs to help their bone marrow overproduce stem cells, which will spill into their blood. Blood will then be drawn and the stem cells removed through a type of filtering machine before being frozen. Next they will undergo chemotherapy to essentially destroy most of the immune system, but not all. Next the stem cells will be reintroduced into their bodies, after about five days of chemo, with the hope that they are clean and no longer have the MS memory.  

They will have to be on special diets, and will have compromised immune systems. It can take anywhere from three to 18 months to recover from the treatment.  

Chad will start his treatment on July 7 and Hinz is scheduled for July 8. The treatment cost is $40,000 USD, plus the cost of airfare, accommodations and their visas. 

While Chad’s treatment and trip are now covered thanks to the overwhelming love and support from Strathmore during his Reset4Chad fundraiser on May 3, Hinz still needs to raise funds for her trip. She has a fundraiser planned for in Cheadle on June 13, mere weeks before she is set to fly out. Tickets have sold out, but anyone wishing to donate, or to follow Hinz’s progress can go to http://kristorussiawithlove.wordpress.com.

Going to Russia will provide closure to them both. It will mean they have exhausted every option to try and reclaim their bodies back from this horrible disease, and is truly the last option. 

“Obviously I hope that everything gets fixed and I am back to square one again, but I kind of accept the fact that, that’s not likely,” said Chad.

“If it does actually stop it great, but if the absolute worst thing that happens is that everybody knows about it so they can tell their kids and friends and family and whatever, that would be (great).”

“I just want to be an active participant, I don’t want to be watching from the sidelines anymore,” said Hinz.