Denny

My name is Denny and I am 71 years old living in a small town in Northern Minnesota.  I have had a diagnosis of Ataxia (unknown origin), for twelve years. An avid outdoor sportsman, I love hunting, fishing and was a passionate long-distance runner. As the past twelve years have progressed, my Ataxia symptoms have diminished my ability to run or walk in the woods. I can no longer safely hunt and it has taken support from family and friends to safely get me into a boat for fishing.  My love of running has evolved to using a rollator walker to accomplish a one-mile walk, and at times, these walks become hazardous with dizziness and instability! Because I am a slow learner with reducing outdoor activity, I have averaged a fall one time per week. A broken nose, stitches and a broken shoulder have been effective in knocking some sense into me! I have created significant worry for my wife and family because of my shenanigans!

In an attempt to adjust to my disability, I have sought counseling and support from many sources. Joining as a member of the National Ataxia Foundation (NAF) has been one of the most effective resources to help me! Six weeks ago, my life changed for the better. I was listening in to a NAF Support Group for those persons 65 and older three months ago.  A participant in our group shared that he had seen significant improvement in his Ataxia symptoms by taking the drug Dalfampridine. His comments struck me, because he stated he felt like he could even begin to jog again, as his balance had significantly improved. Two weeks later I was participating a NAF Webinar with Dr, Susan Perlman from UCLA Medical Center leading a question-and-answer discussion. Dr. Perlman shared positive reviews about the medication Dalfampridine in improving balance for some folks with Ataxia. Dalfampridine is a medication approved by the FDA for patients with MS, but it is not yet approved for patients with Ataxia.

I proceeded to contact my Neurologist from Sanford Clinic in Sioux Falls SD, and after her cautious research, agreed to order Dalfampridine, 10 mg, daily. The next challenge was finding the medication from an affordable source after my health insurance provider quickly denied coverage since this drug was not approved by the FDA for Ataxia. I found the Good RX coupon source and a local pharmacy affiliated to Good RX, and was able to acquire this medication for less than $50 per month!

So, six weeks ago I began the 10 mg. daily dosage of Alphameprodine.  Within a day I had positive results. I am a spiritual man, and I have to describe my improvement with balance and mental clarity nothing short of a miracle! On a scale of 1 to 10, before Dalphampridene my mobility had regresses to a 4. Now I feel I am functioning at a 7!   While I am not cured of Ataxia, I feel I have gotten 3-4 years back.   I can now walk safely with a walking stick, no rollator. My future will not include training for a marathon, but a nice two mile walk in the Northwoods on level ground is in the cards. With continued advocacy, research, dedicated medical providers and community support, those of us with Ataxia, and our loved ones carry the promise of better days.