The questions above were asked by another NF2 patient who is going to walk her first half marathon at Disney World in January. Very few of us with NF2 are able to pursue athletic fundraising events due to the damage to our balance system from the tumors, radiosurgery, or microsurgery. The reason is because the primary tumors that all NF2 patients eventually develop are intwined with the 8th cranial nerve (acoustic nerve). Before branching out and reaching the brain stem, the 8th cranial nerve splits off into the facial nerve and vestibular nerve. Along with hearing loss as one of the main symptoms, very often the vestibular system which controls balance is also affected because the tumor either encroaches the vestibular nerve or the nerve is aggravated or damaged through radiosurgery or surgery.
I had lost a very significant amount of balance to the degree which I would fall over if I shut my eyes, could not squat down without rolling over backwards, and at one time I had to use a hiking stick to walk and could not run. Through hard work over the past 3 and 1/2 years, I have been able to restore a great amount of balance function. Although for me I experienced a drastic loss of balance, I was still lucky as I did not have depend on a walker nor was I ever confined to using a wheelchair. Limitations on mobility are a reality for many people living with NF2.
Below is my response to the questions directed to me:
"Yes. I have balance to run. I didn't before and started running with a hiking pole. Then I eventually was able to run without one and walk without a hiking pole. I only use hiking poles now when I am hiking on a semi rugged trail with an elevation gain.
The longest I have been able to run this year is 1 hour and then I ran almost 6 miles on Monday night. The trail that I will be hiking on is a very wide crushed gravel path which is an old railroad grade. Before my imbalance I would not had classified this as a hike but as a walk. I would not finish in a day if I were doing what I used to consider as a hike.
The goal is a 3 mile an hour pace. We were able to achieve that last sunday even though my husband had an ankle problem. We only walked 6 miles on the trail because of it and went to buy him new shoes.
It took us longer to walk the 12 miles because we had the dogs with us that need water breaks every hour. At the half way point we hung out at the lake for a short while so the dogs could wade in the water. I think it we had about a 2.5 per hour pace and I told him we need to pick up the pace in order to finish while daylight (11 hours)."
Note: I did not use a cane because I was too proud and did not want to buy one. I was concerned I would be metaphorically using it as a crutch and that I would not be motivated to improve my balance. For my birthday in fall of 2003, before I lost my balance function, my husband had purchased me a hiking stick which a camera could be mounted on (I loved to hike and take pictures previously). When I became balance challenged, I was stubborn (and mad) and did not want a lesser quality of life which imbalance inflicted upon me. Therefore, I only used the hiking stick for stability and situations when I absolutely needed it. Other times I would challenge myself to get back what I had lost.
Also, in another communication with this person, I explained how I returned to weight lifting 3 times a week starting in Feb 2007 which made a drastic improvement in my balance ability. In addition, I have also been doing water aerobics and practice standing for at least 3 minutes and do 5-10 squats on the balance device called BOSU (both side up).