Jesse was recently diagnosed with MS.
After a rapid onset of symptoms, MRIs revealed he has lesions throughout his entire spine and in his brain, as well as spinal trauma in his neck from a fall last spring. The trauma is restricting his spinal column causing extreme pain and makes managing this disease extra challenging.
MS is nicknamed the snowflake disease; it is completely different for everybody. Cause, symptoms, progression all vary and each day remains unpredictable. For Jesse, he was experiencing extreme fatigue, numbness and tingling in his arms and hands, memory loss and brain fog. He had to go on leave from his job as Deli Manager at Lunenburg Foodland in July, when he lost most of his function in his arms.
His symptoms progressed through August to include painful muscle spasms, vision changes, weakness in his entire body, dizziness and his hands clench and lock, painfully, into fists for most of the day. Most concerning to us are his cognitive changes; Increased short and long-term memory loss including most memories from our 6 year old Ewan's life, speech challenges and at times, inability to speak at all.
His body isn't receiving the signals his brain is sending and his brain can't pass along the right signals.
MS causes lesions on the myelin sheath, the protective layer around the nerves in the spinal cord and in the white matter of the brain. Both myelin and white matter are responsible for carrying nerve impulses from the brain to the rest of the body. The lesions form plaques to fill in the holes and this can permanently disrupt nerve signals or even sever nerves completely. Each time a new symptom comes it leaves us wondering if it will be temporary, be recoverable in the future or be permanent. During the worst 10 day stretch, new symptoms were coming and existing symptoms were worsening every 2-3 hours. For days, we watched as this horrible disease altered Jesse's whole existence.
Every day is different and what can start as a better day can suddenly decline. A simple task like making the bed, straightening up the sofa or sweeping a room can set off a major string of symptoms to act up. Literally one activity is too much most days.
Like so many fellow Nova Scotians, lack of consistent, proper medical care and mistakes made in referrals has lead to delays in diagnosis, treatment and being seen by the MS Clinic. On August 30th he was finally given the all clear by neurology to pursue physiotherapy, beginning mid September and we are still waiting for an appointment with the MS Clinic in Halifax.
With recommended diet changes, supplements to promote myelin regrowth, treatments and medications he can put his MS into remission. This is where we are in critical need of help. Jesse was our family's sole income provider, aside from my 4 hours/week at the Lunenburg Farmer's Market. I had begun looking for full time work in July, to cover the extra expenses that come with this time of year- back to school, winter tires and heating oil. We were trying to double our income and now we are down to just half of his. I am still searching for work with flexibility to take Jesse to appointments, he can't drive himself. But even with me working full time we won't be able to catch up from the past 6 weeks, let alone cover his new medical costs, travel expenses for appointments, adhere to diet changes with supplements and cover seasonal expenses.
It kills me to think that Jesse doesn't have the best possible chance of recovery, due to financial limitations. My heart wants to drop everything and put him first. But in reality, we have a family. We need to keep a roof over our heads, heat our home and put food on the table.
We need help.
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