An update from Dave Longley: Living with MS

Health

There certainly has been a lot of MS news over the past couple of weeks. It is MS Awareness Month with events taking place all across the country. A few of you have asked me for an update on things: yes, I’m still here.

First off, in case you missed it, Selma Blair did a fantastic interview recently with ABC’s Robin Roberts.

It was such a good interview because Selma touched upon many of the common thoughts about multiple sclerosis, both dealing with questions people have about the disease and personal struggles she faces. 

Please keep in mind that MS affects everyone differently. I’m only sharing what I’ve gone through and what I’ve discussed with my doctor. Please, talk to your doctor to work out the best plan of action for your illness.

When I was diagnosed in the spring of 2005, I began taking a drug called Betaseron. I gave myself a shot every other day. I did this for five years, until my doctor noticed some changes in my blood work. This drug was pretty tough stuff.

Other than the issues with my blood work, Betaseron was very effective in slowing the process of the spread of multiple sclerosis. It worked for me.

That’s when I switched to an intravenous drug called Tysabri. I started at a span of four weeks time, but after 2 years of being on the drug, I was able to spread out my infusions to six weeks. To this day I receive the drug every six weeks. I just had a transfusion last week.

I don’t feel much different after getting my infusion. I know it works because MRI scans of my brain continue to show no new areas of damage.

What’s the damage? Basically, the immune system of a person with MS begins attacking itself. The protective myelin covering of the nerves in the brain or spinal cord is removed. The nerves short circuit. A great example I recently saw was a piece of electric cord wrapped in a protective rubber coating. If the rubber coating was removed, the wires would short out. In my body, the myelin covering is destroyed and the nerves short out. The message sent from my brain never makes it to the intended muscles or is garbled.

There is no cure for multiple sclerosis. The goal of the different drug therapies is to slow the progression of the disease. Some drugs work for some people and not for others. It really is a bit of trial and error that you must go through with your neurologist to find your best plan of action.

Work:

I’m still working at NewsChannel 9, taking on the role of Assistant News Director. This entails being involved in newsroom decisions and operations. There are various projects I am involved with, to lessen the load on our News Director.

I’m still a meteorologist at heart. I look at maps and keep up to date with what’s going on in the world of weather. I do post on social media, or occasionally write a weather-related post for our web site.

I also act as a liaison between the newsroom and the weather office. I can direct our news coverage based on the forecast. The beauty of this is that I’m available to answer weather questions and be a sounding board for how we should be doing things.

I am also here for the Storm Team, to answer questions or just to talk weather or look for guidance on how to handle specific weather situations.

Plus, I’ve been at the station going on 27 years, so I can be a source of information and guidance for our younger employees.

Since I spent many years in front of the camera, I can provide a unique perspective to our producers and management as to how certain scenarios look and feel to on-air talent.

Multiple Sclerosis:

I still have MS.

One of my main symptoms are tremors, especially on my right side, but more and more in my left extremities. I just met with my neurologist last week and she confirmed the progression.

That’s the good and bad of MS. The medicine I’m taking has prevented any new symptoms, but there is no cure for MS. The slow damage to my nerves continues and symptoms I have had keep getting worse. But hey, nothing new to report.

I still have vocal tremors, that can get worse when I get excited or talk too fast. You’ll hear a bit of what that sounds like in the Selma Blair interview.

Fatigue is something I deal with. Not just you didn’t get enough sleep fatigue, but knocked down, dragged out tiredness. I can get through the workday OK, but I usually try to sneak in an hour or two nap on the weekends, or on days off.

I’ve noticed my balance and walking and coordination have gotten worse. I must say, it’s been challenging walking this winter dealing with the snow and ice. As I’m sure you all can relate to. I haven’t fallen, but I have come close quite a few times.

People with neurological diseases can appear fine and not outwardly show symptoms. All the time they are dealing with some crummy issue.

If I have to take my time eating, hold a cup with 2 hands or use a walker…that’s what I have to do. If I talk funny or slowly, so be it. As I’ve said before, I may have some physical limitations, but my mind is working well. It’s going to be tough to outthink me. Hey, look at it this way…since I operate a bit slower, I have time to think about things.

I believe the future is bright in terms of MS research. There is some promising news in terms of research that is being done and new drug therapies that are becoming available to patients. As I said toward the beginning of this post, I’m not going to die from multiple sclerosis. I can’t get rid of it, so my ongoing challenge will be to learn how to best cope with the issues that I face.

Thank you for those that have reached out, wondering how I am doing. It means a lot to me. Overall, things are going well. As well as can be expected. I plan to be around here for quite some time.

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