Hi, my name is Kriss and I have multiple sclerosis. Sounds a bit like an AA Meeting – but to look at me you would not see a thing “wrong” with me – on most days. There are those days that I need a cane to make sure I don’t fall over and hurt myself – or anyone else for that matter, but for the most part I look “normal.”
Let me give you some background here about how I found out and what has happened in my life in the past 25 + years since my diagnosis.
Back in 1977, I was 19 and had just moved away from home when I had some unexplainable numbness in my hands and feet. About a year prior to these symptoms, I had had optic neuritis on two separate occasions. At that time, I remember a physician mentioning MS very vaguely. I just put that info on the back burner as I did not even know what “MS” was. I was tested for several things, a brain tumor, several neurological problems and test results kept coming back negative. At this point in medicine MRI’s were not around. Then I started having numbness in my fingers and toes. It felt as if they were “asleep” but would not wake up. No explanation for it and again more tests that came back negative. This went on for several years. Not knowing if I was losing my mind or if something was indeed really wrong I started to become really concerned that I had some major problem. It took about five years to get a relatively definitive diagnosis – again, without the MRI’s, the diagnosis was still “probable.” They put the pieces of the puzzle together and with the rest of the history of symptoms this is the best diagnosis that they could come up with. It was still a few years until I had an MRI that confirmed the previous diagnosis. At this point, I was relieved to finally get a true diagnosis – as I thought I was losing my mind and nothing was really wrong with me.
A relief for a brief moment and then panic set in. I went thru all the “what if’s” and the possible outcomes of my life and I was not too thrilled with any of them. However, after this brief bit of “pity- partying,” I decided that I may have MS, but that MS did not have me. In the years to follow I continued to experience MS and all the wonderful emotions and feelings that come with it. I became more and more unable to do certain physical things, such as running, roller skating, and a lot of other things I loved to do.
The hardest part of this was when I had my daughter and had a hard time playing with her as much as I would like – a lot of reading and quiet stuff – but we still managed to go to the park as much as I could. There were days when I hardly wanted to get out of bed because of the fatigue – but I just forced myself and did it. This is how I handle a lot of my life – some days I would rather just sit in bed and either sleep or just rest. However, since I work full time I am not able to do this – and I believe that this is a good thing for if I was able to just sit around I might get worse just for lack of any sort of motivation to keep going.
My job is good for me – it gives me a reason to get up in the morning and keep going. I decided a long time ago, that I would NOT go into a wheelchair and thankfully I have not yet had to do this. As I previously mentioned, I do use a cane – more and more as the years go by – just to add more stability to my walking and standing.
I have dealt with the cards that have been dealt to me and I believe with a bit a grace even. The hardest part of MS is that it is a disease that not many know anything about and I hear the phrase “but you look just fine” all too often when one knows not what to say. This makes me feel as if I am just whining and need to get over it. I finally got a handicapped plate for my car a couple of years ago and only use it when I am having one of the bad days. Heat is bad for me and makes me feel even worse so I moved away from Phoenix about 15 years ago. Every summer though, I look forward to more fatigue related problems because of the heat. I have a cooling vest which helps me to be able to be out in the sun more. I highly recommend it to anyone that is heat sensitive with MS as it is a mega saver for me. I am able to go to the fairs and horse shows, and camping without too much discomfort. I love the outdoors and without this vest, I would not be able to enjoy as I can with it.
The one thing that I would like to get across to the main public that does not know what MS is that you can’t always tell what a person’s disability is just by looking at them. I was at a Wal-Mart the a year or two ago and put my handicapped placard in the window and left to go do my shopping – I immediately grabbed a shopping cart to steady myself– since I did not have my cane by then and went into the store to do my shopping. When I returned to my vehicle someone had written on a note that “you don’t look handicapped to me and you should park so someone that really NEEDS it can use it.” That struck my heart hard and I did not use it for a long time after than even though I was in extreme pain. I have since gotten over that and if they are so ignorant, then that is their problem to become educated or stay uninformed and ignorant.
I take a lot of medication – narcotics for the pain, muscle relaxants for the muscle cramps and other medications to alleviate other symptoms. There is so far no cure for this debilitating disease but they are getting closer. All they can do is to try and make the person more comfortable and more able to function in the world without to much trouble.
This brings up another problem with people and their perceptions. Not too long ago, a few people at work started a rumor saying that I was on drugs and that I really shouldn’t be working in “that state of mind.” I was not stoned and when asked why they said that, they replied that I was walking somewhat unsteady and hanging onto the walls and slurring my speech a bit. If they would have just asked me or done some research they would have found out that MS has all these symptoms. If they had bothered to look into a bit more they would have noticed that I was using my cane that day and it was at my desk. But as people are prone to do, they jumped to a big conclusion and assumed that I was under the influence of whatever they figured it was – yes, I was under the influence, the influence of MS. I can’t count the times that people have made comments that “boy, it is too early for you to be drinking” because of their ignorance to my disease.
In conclusion I would just like to say that there are many wonderful, understanding people out there that are there for me in a heartbeat. I just wish more would see the “light“ and not be so judging without knowledge.
Yesterday, two new volunteers registered as Main Street Mashers, the
In September 2007, Jeff was hospitalized for numbness and lack of muscle control on his right side. Most noticeable was difficulty with smiling, talking and opening his mouth to eat. His right arm and leg were affected as well. Doctors suspected multiple sclerosis at the time, but a spinal tap yielded negative results. He was released and instructed to “wait for it to happen again.” It took seven months, and in April 2008, immediately following the first Round Up Ride in
Jeff enlisted in the United States Marine Corps right out of high school in 1984 and served until 1997. After leaving the Marines, he worked for the Arizona Department of Corrections until 2001. A veteran of the Persian Gulf War, he has been diagnosed with Chronic Post Traumatic Stress Disorder, Depression and Bipolar Disorder.
Jeff and Michele have been married since 1985. “Michele is my Wonder Woman,” declares Jeff. “Due to many issues we have had a rough time. Usually I was the cause of the issues.”
When an individual is diagnosed with multiple sclerosis, it affects the entire family. In the Harbisons’ case, Michele has been there through thick and thin. Jeff added, “When BP (Bipolar Disorder) came along and I was not working anymore, she stayed strong and when needed, worked two jobs to keep us afloat. Now with my MS, she continues to work, and supports me emotionally and physically, including hauling the trash! Many of the household chores and cooking are done by her. She makes the trips to the pharmacy to pick up my meds. She made the call to get my rolling walker when I needed it. I still have it and use it when I have to be on my feet for awhile. She argued with our apartment manager to get me a portable hand rail and shower nozzle on a hose.”
Jeff has a weekly regimen of injecting Rebif, a drug that helps decrease the frequency of relapses and delays the occurrence of some of the physical disability that is common in people with MS. “I do have memory issues that have not gotten any better, but the numbness and lack of muscle control on my right side have improved and maintain a level that allows me to walk, drive, or whatever for short periods,” he tells us.
In addition to the physical and emotional issues, two hospitalizations plus testing and specialists were very expensive. Good friends held a golf tournament that helped with copays, coinsurance and other debt.
Before multiple sclerosis affected his balance, Jeff’s passion was motorcycling. He started the first chapter of American Legion Riders in
He keeps a realistic attitude and approach to life. “I try to keep from getting my hopes up too high, but I have kept my sense of humor. A laugh does great things for the soul. I enjoy trying to make others laugh as well. We are where we are. We can only do the best we can to work through things. We have a lot to work through, but we aren't living on the streets and we can enjoy fast food once a payday.”
Jeff offered to help with the Main Street Mashers at the suggestion Dr. Dario Lizarraga, a four year bicyclist with the team. He responded enthusiastically, “I want to do what I can to help with registration or information tables or whatever else is needed.” He added, “I would be honored to lead a prayer for the Main Street Mashers, both riders and volunteers, and would gladly include a blessing for those who suffer with this illness.”
And that my friends, is why we ride.
Multiple Sclerosis and Persian Gulf War Veterans
In September 2008, the National Multiple Sclerosis Society announced a new research project funded by the United States Department of Defense. This information comes from the National Multiple Sclerosis Society’s website.
Multiple sclerosis, brain cancer, amyotrophic lateral sclerosis (commonly known as Lou Gehrig's disease) and fibromyalgia now are recognized by the Defense and Veterans Affairs departments as potentially connected to service during the Persian Gulf War.
While there are no official numbers of Gulf War veterans with MS, the 500 veterans who signed onto a support group at MSVets@Yahoogroups.com, general government figures and anecdotal information from others merit study, said Senator Patty Murray.
"It seems to me that the numbers are high enough and the scientific evidence is enough that we should err on the side of the veterans in this,"
This project and others like it can help Jeff and other American veterans who may have contracted MS as a result of their service to our country.
This is just one more reason why our fund raising efforts are so important.
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