#MySupportHero: Providing Support to People Living with Multiple Sclerosis [Interview] [Transcript]

Patricia_Pagnotta_Multiple_SclerosisGuest: Patricia Pagnotta
Presenter: Neal Howard
Guest Bio: Patricia (Tricia) Pagnotta is a board certified Nurse Practitioner at Neurology Associates and the MS Center of Greater Orlando, where she has been since 2005. She holds certification with AANN as a Certified Neuroscience Registered Nurse, and with IOMSN as a Multiple Sclerosis Certified Nurse. She is a long standing member of the IOMSN and currently a Board Member. She is active in clinical practice and research and has been a Sub-Investigator and Primary Investigator in many MS clinical trials.

Segment overview: In this segment, Tricia Pagnotta, a nurse practitioner and member of the International Organization of Multiple Sclerosis Nurses (IOMSN), discusses the condition, as well as the invaluable role that support partners play for people living with MS. Additionally, Tricia talks about an MS Awareness social media initiative, #MySupportHero, which recognizes those who offer support to people living with MS.

Transcription
Health Professional Radio – Living with Multiple Sclerosis

Neal Howard: Welcome to Health Professional Radio., I’m your host Neal Howard, thank you so much for joining us here on the program today. Our guest is Tricia Pagnotta, she’s a nurse practitioner with Neurology Associates and MS Center of Greater Orlando. She’s here today to talk with us about multiple sclerosis nursing and also about her activities with My Support Hero. Welcome to Health Professional Radio Tricia Pagnotta.

Tricia Pagnotta: Thank you so much Neal.

N: You’re a nurse practitioner, you’re an MS Nurse specifically. Have you always been involved with multiple sclerosis nursing? Or is this something that developed during your career as a nurse?

T: It developed during my career as a nurse. I’ve been a nurse for better than 30 years that I started early with neurologic conditions and then I fell in love with the MS population, so I’ve been doing that for better than 15 years now.

N: How many people would you say are affected worldwide by a MS?

T: There’s 2.3 million persons approximately worldwide affected by MS.

N: Could you explain to me some of the most common symptoms of multiple sclerosis?

T: The most common symptoms are visual symptoms where a person’s either have a change in the clarity of their vision, pain with moving their eyes, desaturation of color. They can also have sensory symptoms on a particular side of their body or just one limb of their body, and sometimes those sensory symptoms can also the end of the trunk of their body. They got the … pain around their abdomen. Weakness is a common symptom where they are weak in one or multiple extremities, often times produces gait difficulties and there are painful symptoms that can occur, persons who can have some cognitive difficulties, about bladder problems. Fatigue is one of the number one symptoms.

N: You mentioned some vision indicators, are these indicators something that can be, so you go to your doctor for an eye exam, you tell them about your blurred vision or some of the losing color and things of that nature. Is he going to be able to run a certain test or be able to tell that this is an onset of MS? Or is he going to need to refer you to someone else just to be sure?

T: In the case of an optometrist, it might be a little bit more difficult because they don’t have the sensitive equipment that an ophthalmologist would have to be able to look at the optic nerve, the thinning of the optic nerve. But since optic neuritis which is the visual symptoms, I was describing for you, is one of the very common symptoms of multiple sclerosis. Again this disease affects persons very early in their life so if someone between the ages of 20 and 40 presents to an ophthalmologist or even an optometrist with the symptoms that more suggestive of an optic nerve lesion, that’s a trigger those individuals to either refer them to a neurologist or at least get an MRI of their brain and that will help us see whether or not they have any of these classic lesions that occur multiple sclerosis. Multiple sclerosis is a chronic neurologic disease where the immune system starts attacking the nerves in your central nervous system and you get scars on those nerves. Those scars, we can see on MRI’s and so an MRI is one of the tests that helps us diagnose and monitor how persons are doing with multiple sclerosis.

N: When it comes to diagnosing MS, how long does it take to get the proper diagnosis? Are some of this symptoms can be attributed to other things, less severe disorders, I’m sure. Is that the case or am I mistaken?

T: No, you’re not at all mistaken. Multiple sclerosis, if you were to use Google, anything can be caused from multiple sclerosis, because it’s coming from your central nervous system. But as you said, there are things that are much more likely to occur. So you can get numb and tingleness in your hands, some carpal tunnel syndrome, that’s a very common thing. The process of diagnosing is really excluding other things because multiple sclerosis is a rare disease. We do lab work to exclude infections, other type of abnormalities that might cause person’s to have those symptoms with then the MRI is a very good tool. Sometimes persons have to get lumbar punctures but the average time to diagnosis really depend upon how good a person is able to give a history. There are persons that have been diagnosed very quickly and there are some persons that have strugglef for months prior to get in their diagnosis.

N: If someone is by themselves and they begin to experience some of these symptoms, do you find that a person without family members there or someone to observe things that maybe they themselves aren’t paying that much attention to. Do you find that diagnosis is a little bit quicker, a little bit more accurate? Just how important is a support group once you’re diagnosed and you decide or you know that you have to live with MS?

T: Support persons are hands down extremely helpful with persons who have multiple sclerosis. Yes, some of the more subtle symptoms as far as coming to a diagnosis, an individual may recognize more obvious symptoms like maybe some weakness or profound numbness, or some visual problems. But some of the other minor changes in their walking or in their thinking process or even their fatigue level are sometimes much better reported by family members. That is extremely important to have a support person, be it a family member or a friend. Then again, as far as going forward with the disease this is a chronic disease that we don’t have a cure for and it can be very interrupting in their life. Having persons to support them, to give them strength, to be there when they’re having good days and bad days is extremely helpful to them. And I found those persons that are successful do have a support person.

N: There’s an effort that I’ve become aware of, it’s called a #MySupportHero? Could you talk about this initiative and talk about any role that you playing role in it?

T: Sure. I am working with Biogen to raise MS awareness and they have a support program where you can access through #MySupportHero. You can go on to that and give appreciation for those persons who support you if you have a multiple sclerosis every day. It can be your family members, it can be your best friend, it can be anyone who gives you that support. I encourage persons to do that, I also encourage persons to go to abovems.com to learn more about support and support that Biogen can give them when they struggles.

N: You mentioned one resource at #MySupportHero. How can people get involved specifically with that program?

T: They access that through either Facebook or Twitter and they then put their comments on that about their support person. So it’s acknowledging the persons that have been helpful to them to live with day to day challenges of multiple sclerosis.

N: And sharing it forward, I guess the word out even more, yes?

T: Yes, the more that person share, the more the word gets out because there’s a big misperception as to what this disease is. Awareness, that’s why we have to move research forward and help persons with this dramatic disease.

N: What one great piece of advice would you like to give today to folks that are living with MS and maybe those that are supporting them?

T: My biggest advice would be to build resilience by educating yourself. Educating yourself about the disease, educating yourself about your symptoms, be very accommodating to having a variety of different persons educate you. But also being close to those persons that support you because the persons who support you are instrumental in helping you maintain resilience which is something you’re going to need to deal with the day to day challenges as a chronic disease state.

N: Finally, where can our listeners go and learn more about multiple sclerosis nursing?

T: They can go on to the iomsn.org – The International Organization of Multiple Sclerosis Nurses, and that we have a very nice website and there’s lots of tools off of that website to learn more about multiple sclerosis and of course, abovems.com is also a great tool for persons to look for information about multiple sclerosis.

N: Well I appreciate you’re talking with us today Tricia.

T: Thank you.

N: You’ve been listening to Health Professional Radio, I’m your host Neal Howard, in studio with Tricia Pagnotta. Transcripts and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm. You can subscribe to this podcast on iTunes, listen in and download at SoundCloud.