In 1982, I was experiencing stiffness in my legs and problems raising the legs when going over various obstructions. I made an appointment to see a neurologist in Sioux Falls, SD for an evaluation of my leg problems. I had a myelogram and CT scan of the spine that did not reveal any pathology. I was given a prescription for Baclofen (Lioresal), a muscle relaxant drug, but had no significant results.

In November, 1983 I went to the Mayo Clinic in Rochester, MN and was diagnosed with heredity spastic paraplegia (HSP). Oral Baclofen was attempted again, but still no improvement. With the progressive nature of this condition, I had become less ambulatory with greater hyperextension with the knees. Flexing of the knees and walking had become more difficult.

Click your mouse on the following link to to learn more about HSP: SPF - HSP Spastic Paraplegia Foundation, Inc. WEB page

In May of 1995, my doctor at the Mayo Clinic at Rochester, MN informed me of the FDA approval of the Medtronic Baclofen pump and asked me to come back to the Mayo Clinic for some more evaluations. I was given a trial injection of Baclofen into my spinal fluid and because of the positive results with increased movements and flexibility of my lower extremities; my Dr. suggested having the internal surgical placement of the Medtronic Baclofen pump in my lower abdominal area. With this pump, I was given a daily Baclofen dosage of 100 micrograms/day. The following refills took place every 90 days and the dosage increase was limited to 5-10 micrograms (or 5%) at each refill. The clonus and hyperextension of my knees were greatly reduced with the infusion of the Baclofen into my spinal fluid. The pump was not the cure for my disorder, but was a positive result in my situation.

The battery for these pumps normally lasts for 4-5 years and I had surgical implant of my second pump in 2000 and my third pump was implanted in 2006. The new pump had a reservoir volume of 7.0 ml and I receive stronger 2000 micrograms/ml concentration of the Baclofen. The new pump extends refills for 180+ days rather than the past concentration of 1000 micrograms/ml that lasted 90 days. Currently I receive a continuous 24 hourly dosage of 15.4 micrograms/hour, amounting to an infusion of 370 micrograms of Baclofen daily.

In the mid-1990’s, I was experiencing problems getting a full night’s sleep, because of leg spasms. I tried various over-the-counter sleeping pills and Ambien with no improvement. I didn't have any physical pain, just leg spasms that I had to contend with. I participated with an Intranet forum group for those individuals with my HSP disorder and noticed a listing that mentioned a drug called Mirapex for the nightly spasms. I received a prescription for this drug and I currently take 1 mg of the Mirapex 2X daily. This dosage has greatly reduced the spasms and allows me to have a full night’s sleep.

On looking back over my life, I'm not sure where all the years have gone. I know my life has been a very pleasurable journey in time. Where am I going with my life today and what is its purpose? My current health situation is based on having a disability that has affected my lower extremities and my walking. This condition is know as hereditary spastic paraplegia (HSP), a genetic condition that I inherited from my father's side of the family. It seems to have taken over my everyday life. Am I the same person I was 30+ years ago, before my symptoms began? This was not the way I expected my life to be at all. Does that make me different from anyone else in the world? Can anyone predict their future? Does everyone like what they see at our older age? I guess not. However, it still seems like I'm living in a bad dream and I'm waiting to wake up someday physically normal. I keep trying to convince myself this is reality and now I must learn how to live with this debilitating condition.

In my younger years, I did not include this condition in my plans and future dreams. I never knew that in my later years, I would be disabled and unable to walk. I have attempted to handle my current health situation, but what does the future hold? I had no idea just what kind of frustrations I would have to deal with and face every day. Who would have even imagined that just taking one little step could be a major physical challenge. No matter how hard someone tries to understand a disabilty, you can't until you actually experience such a condition yourself. We often take so much for granted in life. Walking comes naturally to most people.

Is my reason for being, to watch the ups and downs with the progression of this condition? Is this what I really want? No, I think there has to be more to this life and I must find it. What should I be looking for? The answer depends on whether or not I like my inner self enough to overcome what I've become on the outside because of my disability. Yes I am still warming, caring, and in love with life, but in addition I am frustrated with fear and sadness over the loss of the abilities that I once had.

My life has always been based on performance, activity and what I could do for or share with others. Due to my physical limitations, I can no longer live the life or participate in the outdoor or sporting activities as I have done in the past years. With my former job as permit coordinator for the SD Game, Fish, & Parks, I attempted to make the most of every day working with the public. I retired in October of 2007, after working 33 years with SD state government.

Unfortunately, I must accept my disability and get a message to people who feel they cannot go through life with a disability. Guess what, it can be done and it is well worth it! I am a valuable person and hope to continue being an asset to other people and society as a whole.

I am 57 years old and still in love with life. Currently I am unable to walk and have used a wheelchair since December, 1999. I was 33 years old when I started to have symptoms of HSP and have since crossed over many bridges throughout these years. I wish this was just a bad dream and I really did not have this condition. Unfortunately, this is not the case. It's real!!! I am a person with a physical disability, whether I like it or not.

My doctor once mentioned that perhaps my neurologic disorder is closing a door for me, but may still open better and bigger windows in my future!!! He also reminded me to keep: 1) A Sense of Humor, 2) A Good Attitude, and 3) An Active Life Style. Having all three of these will not slow down the progression of my disability, but not having any one of them will almost certainly speed up its progression. I never would have guessed that my new life of having a disability and in a wheelchair would have such never ending experiences and challenges every day. Everybody has a handicap, but some people can hide their disabilty better than others and that is so true. I remember the days of walking with a cane and everyone staring at the crippled man. Now since I use the wheelchair, the staring has almost stopped. People are willing to get out of my way and even open the doors for me.

I may not have been able to live out all my dreams and ambitions, but my past years have been a very full and happy life. However, my life is not over yet. I have a great deal of living to do whether I can walk or not. Just how I handle my disability is the answer I have to find? How much harder can this life be? As I have learned, it can be very difficult. Life must go on, I have to cope with my disability and keep a positive attitude.