MS Says Hello

May 27

We’re all set and ready to go the following morning. We go to bed well rested and with full bellies. We’re prepared for the colder weather, but we weren’t expecting this.

Ben woke up around 4:30 am feeling some symptoms of multiple sclerosis. He was feeling tingling sensations running down his right leg. Then going to and from the bathroom a couple times he was losing his balance. As he continued to try and sleep he began having numbness in his right hand and arm. His sensations went on for several hours in the morning. He had tingling on both arms and legs, but this was strongest on his right side. His right side is typically the side that he has the worst symptoms, except for the left eye blurriness that’s on going due to the optic neuritis that’s been caused by his MS.

We decided to have breakfast and think about what we should do. Given the rain and ongoing symptoms we decided to take yet another down day to recover. It’s probably safer to not be on wet slippery trails with this going on.

Meadow was excited about the decision.

Meadow is always excited to have extra playtime and couch time, but this is very disheartening for Ben. He’s crushed. This can happen at any given time unfortunately for him.

It’s been amazing for him that during all our hiking, this far, his symptoms have been reduced to nearly nothing until now. Usually it’s stress, exhaustion, or severe temperatures (mostly heat) that cause a flare up of symptoms, but he can get flare ups at anytime and does. This is why they call this disease a “ghost disease.” You can be a 100% normally functional person one minute and the next you can be brought to your knees with an unexpected flare up. It breaks my heart to see him saddened by what he cannot control.

We got our re-supply from the post office and sent on our next package as planned. Though today is anything but planned.

We relaxed in our hotel room, which is starting to feel too much like home. As the morning went on this symptom lessened and the fatigue set in. Fatigue in MS makes you not feel capable of getting off the couch. Though feeling this way he fought on and kept himself getting outside with Meadow and moving around as much as possible hoping to feel better. The fatigue lingers on, as we plan for tomorrow to be a new day and back on the trail we will go.

This man is going to concur this.

Just like he did at the Muckfest in Boston.

We take each day as they come. And this day MS may have won, but this won’t stop us. This too shall pass.

We hope to be on the trail tomorrow and still on the trail as World MS Awareness Day is May 30th. We are grateful for all the efforts of the Multiple Sclerosis Society to help those effected by this disease and their researching efforts to find a cure. This disease effects far more than we realized. As we tell people about Ben’s story with MS we’re surprised by how many people tell us of how they too suffer or how they know someone who does. It’s surprising how differently it effects everyone.

We’re glad to do what we can in our efforts to inform others of the disease and to do our own Finish MS fundraiser. We hope we can do our part to help bring about a world free from MS.

Every dollar raised directly supports people living with MS in our community, funding important programs and services and fueling research. You are helping to create a bigger impact than you may realize.

http://main.nationalmssociety.org/goto/mymsvstheat