In late October of 2022 I had a hearing loss relapseWhen you present to your doctor or hospital with new or worsening central nervous system symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapse. (Also referred to as a flare by the myelin oligodendrocyte glycoproten antibody disease (MOGAD) community).. My doctors started me out onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. a prednisoneA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD) it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammation. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acute attack to avoid a rapid onset of relapse. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acute attack, but it is not recommended long-term due to the profound effects of chronic steroids on a child’s health. Use of oral prednisone as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid Dependency) taper, resulting in insomnia that lasted four months. I reached out to my general practitioner and neurologist, tried several medicines, but nothing worked. Over the next few months, I continued to get worse with increasing insomnia and other brain-related symptoms until I ended up unresponsive in the Antioch Kaiser Hospital for two months. I was then transferred to a rehabilitationThe effort of restoring a person back to normal function through targeted treatment such as physical therapy. hospital in Vallejo. This put me in a very dark place. One of my friends told me she got pissed while I was there because my IVA way of giving a drug or other substance through a needle or tube inserted into a vein. was pulled out multiple times and blood was dripping from the puncture site.
The only thing I recall is waking up and being told that I was not communicating in any way, shape, or form.
I was scared and unsure of what was to come. I had to learn how to walk and talk again with physical and speech therapy. At one point I remember waking up and realizing that all my hair was cut off in the back of my neck. It was very traumatizing and I felt violated.
Although I struggled with my memory, I was eventually able to find comfort and familiarity in music. Listening to The Ramones was very therapeutic for me since I knew the lyrics to all their albums. It was the one thing that helped with my memory and was the catalyst to where I am today.
Now I remember how proud I am of myself for helping other MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease patients find resources and MOG doctors in their area. As the Director of Blind Resources, I have helped develop patient resources, and I travel to many conferences and meet other patients with my condition. I recall the videos I created for those who are visually impaired or blind to help them find more independence in their daily lives. I also answer questions patients may have about the disease. Most importantly, I remember how resilient I am and that I never give up, so I am especially proud of myself for walking 3 miles to Big Break and back home without getting lost.
I had to practice that route multiple times to get it right.
This is the message I aim to get across when I conduct monthly support groups for MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. patients, showing them that no matter how challenging their situation is, there is always a way to persevere and overcome. It doesn’t happen all at once, but in small – sometimes microscopic – steps, that accumulate and build us up to the point where we can be at the place we couldn’t imagine at the time, but we do get there.
I will be going to The Guide Dog School campus soon to refresh my skills and show my instructor that I know how to communicate with service dogs and demonstrate that I know how to show my dog is obedient.
This is the next challenge that after going through what I have, I am prepared enough to handle.
By Andrea Mitchell
Desde Chile, te envío un abrazo cariñoso y lleno de admiración por tu camino.
Comments are closed.