Wednesday, November 19, 2008

Horseback Riding

A friend suggested I try horseback riding. There are places that use horseback riding as therapy for MS. It helps with balance and muscle control. I'm going for my third lesson today. So far, so good.

Monday, May 19, 2008

April 24, 2008

I had my 9 month check-up with Dr. Kerr. He said my walking has improved from my six month check-up. My balance is better and I was able to do the tandem/tightrope walk for the first time. In the past, I would tip over and look very uncoordinated trying to walk heel to toe. Now, I am better at it. Dr. Kerr also had encouraging data from other HiCy patients who showed improvements up to 4 years after treatment!

It is great to hear a brilliant neurologist and researcher say that one can continue to reverse the MS Damage. My homework is to continue working out at the gym and to push myself to increase my walking distance/duration. I will also use every one of the physical therapy appointments that my insurance company has approved. I was given 2 per week for 4 months. My PT has helped me compensate for past MS Damage by working on balance and gait exercises. Dr. Kerr also told me that there is much more interest in HiCy and they are gearing up to see more MS patients and help other clinics/hospitals to use the protocol too. I said that I hope it will be given to patients earlier in the disease to "shut it off" so they don't have to go through as much as I did to get here. Dr. Kerr agreed that it should be offered earlier. I was happy to learn that MS patients that had read my Blog have scheduled appointments to be evaluated at Johns Hopkins. It is my sincere wish that this treatment will continue to bring recovery and inspire new hope for a brighter future to other MS patients.

Saturday, January 19, 2008

January 16,2008

I had my 6 month follow-up with Dr. Kerr today. Things are continuing to improve. Just like at my three month post HiCy visit, the MRIs revealed NO NEW LESIONS AND NO ENHANCEMENT!!!

My EDSS (expanded disability systems scale) scores are also looking better. Before the HiCy, I had an EDSS of 5. At 3 months post HiCy, my EDSS was 3.5. Today Dr. Hammond told me it had dropped to 2.5! My reflexes and physical tests improved again. Also, my walking is better. Working out at the gym with a personal trainer has really helped me to strengthen my muscles. I still have some pain and "pins and needles" in my feet that I've had for years. Dr. Kerr gave me advice about reprogramming my muscles by practicing walking on different surfaces (indoors and outdoors / even and uneven) in order to continue to improve. He and Dr. Hammond spoke quite positively about my progress and were very encouraging about my future. The fear and hopelessness that I felt last winter is now gone.

I am so grateful to Dr. Hammond, Dr. Kerr and Dr. Brodsky for letting me do the HiCy protocol. My original goal was to stop the rapid progression of the (MS) disease. I seriously thought that lowering my EDSS score would be wonderful, but hard to fathom. It amazes me to be examined and to see and hear that things are actually better! At 46, I know I won't feel like I'm 20 again, but at least I don't feel like I'm 90 anymore either.

The best thing of all is that I have HOPE for the future.