We are starting a series titled, Patient Profile, to highlight other ambitious individuals living with NMO (neuromyelitis optica). We want to share their stories as examples of how we’re in this together.
Today we feature Grace Mitchell, which many of you know as our Facebook patient page moderator.
1. NMO stats (diagnosed since, number of attacks, treatment centre, age if you’ll disclose).
I first became ill in April of 2005, when I was 52 years old. I had gone to bed one evening after work, and awoke the next morning to find myself paralyzed and without bowel or bladder control. I was taken to the local hospital, where lab tests and an MRI were performed. Unfortunately the MRI was only of the lumbar spine (my very large lesion was in the thoracic spine) and the on call physician was unable to find a cause for my loss of function, informing me that it was likely hysterical paralysis caused by conversion disorder. By the next morning the paralysis had moved up my chest, and I was ambulanced to the University of Pittsburgh Medical Center, where I was initially given a diagnosis of Idiopathic Transverse Myelitis. After several weeks in the hospital and a subsequent stay in a rehab facility, I was finally able to come home. Roughly eight weeks out of rehab, I again found myself paralyzed and was sent back to the University of Pittsburgh, at which time my case was handed over to Dr. Rock Heyman, Chief Division of Neuroimmunology/MS, who diagnosed me via the Mayo Clinic’s NMO IgG test. He’s been my neurologist since that time, and has gone above and beyond for me.
2. You’re known as a leader in the NMO community. When did you first get involved and how?
At the time of my diagnosis, there were only about 800 documented cases of NMO in the US, so I immediately set out looking for other patients. I was lucky enough to be contacted by Tim Mulvihill whose partner had also been very recently diagnosed. We spoke on the phone for about six hours that first night, and by the end of that first phone call had decided to start an advocacy group for fellow patients. We didn’t want it to be simply a support site, rather we wanted to actively and tangibly impact the patient experience in a positive way. The only way to do that was to first educate ourselves about the disease, so we dove into what scant research there was available, and also started contacting physicians and members of the research community. I am not exaggerating whenever I say that our lives immediately became as busy as Grand Central Station. The patient response was incredible.
3. Because of the nature of your work as a moderator we know you’ve become close to so many patients. Knowing about their individual hardships with NMO, how do you stay positive and impartial on a daily basis?
It’s so very difficult to remain in a positive frame of mind when dealing with fellow patients who are often very frightened, and sadly, profoundly disabled. Because I have worked so hard to build my credibility with the wonderful researchers of this disease, and because they in turn have always been so kind to me, I work very hard to handle myself in a professional manner, despite not being a professional. That being said, I often find myself in tears after speaking with a fellow patient who is desperate for help. It’s a very emotional experience.
4. We want to know more about who Grace is. Tell us about your day to day activities including your hardships with NMO.
My personal identity has become so entwined with NMO that it’s hard to see where the disease ends, and I begin. It’s so important for me to keep my mind vital and alert, so in my spare time I read anything and everything that I can get my hands on. Science, history, politics, and biography, books and articles are my personal favorites though I do read a bit of fiction (it’s a wonderful escape). I also enjoy listening to music in my spare time, with blues (particularly old Delta blues) and classic rock being my favorites. Physical activities are difficult for me these days due to the intense fatigue that often comes along with NMO. Just an outing to the grocery store wears me out and puts me to bed, so chilling at home with a good book and my cat has become my favorite activity, with the exception of spending time with my beautiful little 4 year old granddaughter.
5. Personal relationships can be tough in the best of circumstances. What advice do you have for NMO patients to manage relationships of all types (love, children, as a grandparent, family, friends)?
Managing any type of relationship is difficult when also dealing with a chronic disease. Often, family, friends, and significant others, don’t understand the physical limitations that accompany an NMO diagnosis. Whenever I say that I am tired, it’s not the same kind of tiredness and fatigue that a healthy person might experience after putting in a hard day at work, rather it’s an overwhelming feeling of total exhaustion that isn’t necessarily remedied with a nap, or even a full night’s sleep. My advice to other patients is to give as much as they can to their relationships, but to know their personal limits. Another important thing to remember is that as patients, we can’t expect others to *own* our illness. The world doesn’t stop just because we are ill. Most of our family and friends are sincere in their efforts to understand our situations, but because they have not experienced it themselves their understanding is limited, and that’s not their fault. Sometimes, we as patients need to take a step back and realize that the world does not revolve around us simply because we have a chronic illness. Does that sound harsh? Maybe, but it’s the truth as I know it.
6. What keeps you personally motivated and what keeps you fighting?
That’s an easy one to answer, my desire to be of help to my fellow patients. Whenever it’s all said and done, we’re all in this together.
7. Tell us a moment when NMO embarrassed you (if ever).
You know, despite NMO being a difficult disease to deal with, it does have it’s humorous moments. Shortly after my second bad attack whenever I became able to walk a bit in my walker, I got a ride to my local pharmacy to drop off some prescriptions. As I exited the car, I got that painful burning rush that always precedes a bout of tonic spasms, and before I knew it the pain hit me and I was lying on the pavement. Now, if you’ve ever experienced tonic spasms, you’re fully aware that they’re not the old garden variety charley horse, rather they’re screaming pain, and I do mean screaming and I WAS screaming. So there I was, lying there on the sidewalk with my shoe off, my right leg all bent askew, my arms stiff as boards, my right ear pulled down to my shoulder, my mouth wide open, and all the while I was screaming for help. Several pedestrians came and stood around me, but not one would intervene (I think I probably scared them to death). Finally, out of the pharmacy marched my very favorite cashier who told the people to move along that there was nothing to see there, and scooped me up and helped me limp into the store. Talk about being embarrassed!
8. In your opinion, what needs to change about the medical system, the NMO community and the pharmaceutical industry?
Whenever it comes to our medical system, I think that the biggest issue for NMO patients is the fact that most general neurologists are not educated about the disease. If you’re lucky like me, you’re seen at a large teaching and researching facility, but unfortunately that’s not feasible for many patients who end up having to depend on neurologists in rural areas, and to utilize facilities that are less than stellar. As for the pharmaceutical industry, they are both friend and foe. I hear patients complain all of the time saying that the pharmaceutical companies have cures that they don’t want to share due to financial gain. I do not think that’s the case. Patients don’t understand the enormous amount of time and money that goes into developing a drug, nor do they understand the red tape that must be waded through to get a drug to clinical trial. If trial results are satisfactory, the next step is getting FDA approval and that’s not something that’s instantaneous, in fact it can take years. Then there is the fact that some of the drugs that we use are exorbitantly expensive and the insurance companies are reluctant to cover them, meaning that patients must jump through hoops and are often denied several times before the treatment is finally approved by the insurance company—if it is approved at all. On the other hand, if not for these pharmaceuticals many of us would be in much worse shape than we currently are. It’s a case of six of one and a half dozen of the other.
9. What do you think should be the next steps in finding a cure for NMO?
As for one day finding a cure, my feeling is that the cure will come via the amazing research that is currently being conducted concerning tolerization. The whole concept is huge for NMO research. While it’s unlikely to occur during my lifetime (I’m not a spring chicken anymore), I do believe that it will happen, and that will be an amazing day.
10. Finish this sentence; Grace is ___________.
Grace is determined.