Having a positive mindset in all situations of life is a priceless gift that only a few people posseSs. the lives of Amber Parker and Yemisi Ilo living with Multiple Sclerosis (an incurable disease that affectS the brain and spinal cord) proves that with a positive mindset to life, you can acheive whatever you want in life irrespective of any challenge, Ndidi Obadiah reports
Early stages of life usually mean no worries but for Amber Parker, it was life changing.
According to her, “I started to worry because my body did not feel right. I thought it was normal preteen body changes at first, I was 12 then, but something was off and I didn’t want to worry my family. My first symptom was losing sensation in my abdominal area.The best way to describe it was that my stomach felt asleep. I finally told my mom and she kept a close eye on me.
My next symptom was that my vision started to become very blurry. My mom took me to the eye doctor and was given a new prescription for glasses. This went on for a couple of months and then everything began to move quickly. I was always extremely tired, I could barely stay awake long enough to take a shower. My parents took me to the doctor and they found nothing wrong.”
Narrating further, Amber said “As weeks went by, my health started to decline quickly. I had missed numerous days of school. I could not walk, I had lost so much weight and had been to my pediatrician office so many times. My parents demanded answers and finally my pediatrician started to connect the dots. He pricked my feet and legs and I felt nothing. He told my mom and dad I needed to see a neurologist. I went to see a neurologist that day and he suspected that I had MS (Multiple Sclerosis). I had to do a spinal tap. The next day, I was taken to the emergency ward because I tried to get out of the bed and just fell flat because I could not feel my legs.
Although this was 10 years ago, I can remember it like it was yesterday. They did a three part MRI and we got the confirmation that I would live the rest of my life with this disease.
I didn’t know what to think because I was just a kid. I wanted to be normal and have friends and go to school like I used to do. I didn’t know much about MS except for the fact that it took my old life away and that really scared me.
After five days of steroid infusions and months of intense physical and speed therapy, I was slowly beginning to feel like the old me. I learned that I would begin to give myself injections which didn’t make me happy.
Although I had a lot of support, I still felt alone. I kept going into this dark place but my faith in God and family made me tell myself “Amber you can beat this.” I decided my life is so much more than I am willing to give to this disease.”
Talking about her career, she said “I was home schooled for the rest of my junior high year. I graduated from high school on time in 2011 and went on to my first year of college. I took another direction in studies and now I am 22 and a full-time nursing student.”
Advising people living with MS, she said “I am very active in the MS community such as walks, seminars and social media. I want to let people living with MS know that you are not alone. There is nothing like the support of your family and friends. Know your body and trust what it is telling you. When your body is tired, let it rest. Learn your symptoms and join a support group. From my experience, I know what a person with MS goes through and I want you to know that we are in this together and I have so much in store for the future. I can have a career, get married, be a mom. I can add something positive and great to the world.”
For Yemisi Ilo, she was was diagnosed of MS in May 2008. According to her “four years after my first symptoms. It became obvious that something was wrong after the birth of my second child. I had spasms in my arms and my hands felt funny. I knew it had to be a neurological condition and so I visited a neurologist here in Lagos who diagnosed me with cervical spondylosis. This was in June 2004. He took some x-rays and then stuck me in a collar, prescribed medicines but the spasms did not stop. I then went off to do an MRI scan at the National Hospital in Abuja – where a neurosurgeon saw my scans and asked to see me. He asked me loads of questions and then said that I had MS.
I told this to my neurologist in Lagos, who said it wasn’t possible. As time went on, I continued to have strange sensations all over my body – numbness, tingling and then I started to find it difficult walking long distances. I also realised that I could no longer stand in the shower for longer than 5 minutes. I was scared because I had no idea what was happening to me and because I couldn’t properly articulate it – no one else understood.
In November 2007, I lost sight in my right eye. I also lost the ability to walk for a few days. I knew instantly at this point that it was MS! I went to see another neurologist in Lagos at the Lagoon Hospital in Apapa. I then did a new set of MRI scans (brain and cervical spine) and was told I either had Devic disease or MS. A visit to another neurologist in the UK and more MRI scans and blood tests confirmed that I had MS in May 2008.”
Speaking on some of the physical limitations that MS has imposed on her life, she said “I can no longer walk without an assistive device. I use crutches and for longer distances – a wheelchair. In Nigeria it is a nightmare. There is no step free access anywhere.”
On how costly this has been on her family mentally, emotionally, physically and financially? she said “ I had two children before I was diagnosed and two after. The older two remember a time when I could run with them. The younger two have never seen me walk unassisted. The kids are fine. MS is not an excuse for me to shirk on my responsibility as a parent. My children are grounded and have empathy for anyone with physical challenges. I can only imagine how awful this has been on my husband. He has watched me go from being a very active and independent person to one who needs help with the most basic of things including getting in and out of bed. It hasn’t been easy – but with God’s grace we have made it work somehow. It has also been tough financially. I have traveled far and wide looking for a solution – Poland for vascular surgery, India for Aryuveda, USA for physical therapy and most recently to Singapore for Hemapioetic Stem Cell Transplant.
Continuing, Mrs Ilo said “The major problem with MS in Nigeria is in the diagnosis. Up until recently MRI scans were not readily available and now that they are, it is very expensive. A doctor might suspect MS but without MRI scans and/or a spinal tap he/she cannot proceed to treat it.
The treatment in itself is another issue as MS drugs are totally unaffordable and would be out of the league of 99 percent of Nigerians anyway. In Europe the government pays. In the US – insurance pays.
MS also starts off as relapse remitting where you have an attack that resolves itself after a few days. Another attack might not come for months. Over time the cumulative effects of the attacks can leave a person in a wheelchair, or blind. How do you explain “inflammation in the nervous system as a result of a defective immune system” to someone with basic education? It is easier to believe it is witchcraft. People are curious to see someone look so well in a wheelchair or using crutches with no outward sign of a fracture or broken leg.”
Have you ever been worried about being stigmatised? here, she said, “The thought of being stigmatised has never occurred to me. I’m far too secure in myself to be worried about that.
Who are they that would stigmatise me? I don’t know them so I don’t care. I had and still have no issues about being open. The absence of the right information fuels stigmatisation. Fear fuels stigmatisation. So yes, correct information is essential. Anyone that is afflicted has a responsibility to educate themselves on their own challenges. Then they will be able to educate those around them. It has to start from within. The highest rate of suicide in the world is among MS patients. That is how bad it is. “
What’s next on your agenda in terms of raising awareness about MS? She said, “I would like to set up a rehabilitation centre for people with neurological disorders where they can access information on all their medical options; where we can help with fundraising, physical therapy and counseling amongst other things