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Dave’s Blog: MS update

One of the many great things about CNY’ers is their support of various causes. I have felt that support ever since I announced early in 2011 that I have been battling with Multiple Sclerosis.
Wow, what a summer! Hard to believe the Fair is just a couple of weeks away. I can’t wait to see all of you. Be sure to stop for one of our newscasts and say “hi.”

One of the many great things about CNY’ers is their support of various causes. I have felt that support ever since I announced early in 2011 that I have been battling with Multiple Sclerosis. I can’t thank you enough for all the prayers and words of encouragement. As I’ve stated on the air, there are people that are dealing with more serious issues and have MS symptoms that are much worse. By “coming out”, my goal was to shed light on the disease, and let folks know that many of their friends and neighbors are silently dealing with this at present incurable disease.

Back on Monday, July 30, I participated in the annual Tee Off Against MS golf tournament, to benefit MS Resources of CNY (msrofcny.org). I sat down with Carrie Lazarus before teeing off to bring all of you up to date as to how things have been going. You can watch that interview here.

Honestly, there haven't been any major changes in my health over the past year or so. That’s the weird thing with MS. Some people have flare-ups or times when the disease is active. Other times, they feel fine. They may wake up one morning unable to walk or with double vision, which lasts for a day or so. This is especially true for people who aren’t undergoing any drug therapies. The disease isn’t curable...at least right now, but the drugs that people with MS take go a long way in cutting down the number of these relapses.

As for me, I can’t say that I have any relapses, but the tremor in my right hand is still quite active. At times, I notice some shaking in my left hand, especially if it’s unusually hot, or if I’m under stress or exceptionally tired. Sometimes I’m a little more tired. This is why it’s so important to know what’s ‘normal’ for your body. That way when something out of the ordinary happens, you can take note and get it checked out.

Speaking of hot. What a summer it’s been for heat, and for people with MS. It really zaps the energy out of me, so I’ve been real careful to not overdo it on hot days. It’s been so consistently hot though, that I don’t want to remain shut indoors, so I just keep an eye on things when out in the heat. When I’m playing golf with my wife and son, I might play 9 holes, duck in the air conditioning for lunch and a break, and then head out for the back 9. The Multiple Sclerosis might have changed how I go about doing things, but so far it hasn’t totally prevented me from doing the things I love.

I have mentioned in my on air segments that I have noticed some things cropping up in my speech. This one’s tough for my doctor and me to get a handle on. A lot of the plaques (sign of where the disease has been active) in my brain are located around the brain stem. So, any activity of the disease could impact any one of a number of things. One of those areas is the speech region. I did visit a speech therapist, and we found no physical limitations to my speech. A lot of the problem was that my brain was working faster than my mouth muscles wanted to work. What I work on in almost every on air performance, every time you see me on NewsChannel 9, is to slow down, enunciate words, particularly the end of them, and take breaks at the end of sentences. There are times that old habits sneak in, but overall the good times are more frequent than the bad ones. I really appreciate your patience in this, and I know that I will conquer this issue. The big thing is developing strategies in dealing with issues and recognizing potential word combinations which could be tricky.

That brings you up to date with things on my end. A lot of folks have been asking. Overall, I feel good, I get my monthly infusion of Tysabri, and I listen to my body. Thank you so much for the prayers and support. As always, if you have any questions, please don’t hesitate to get in touch with me at the station.

-Dave
davelongley@9wsyr.com


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