Living with MS as a family in the summer takes more than sunscreen. Those lazy hazy crazy days of summer are quintessential to family fun unless of course someone has Multiple Sclerosis.
Uhtoff’s Phenomena- at the risk of oversimplification- is a worsening of neurologic symptoms in multiple sclerosis when the body gets overheated.
In our story Patti is strongly affected by Uthoff’s Phenomena. Pushing her wheelchair from any air conditioned building to our air conditioned wheelchair accessible van, her speech becomes almost immediately slurred to incomprehensible.
It’s also a most dangerous symptom because depending on care situation or living situation in case of fire or prolonged exposure to sun the person with MS with worsening neurologic abilities becomes confused, weak, and potentially unable to summon or even understand help.
Horrible tragedies can happen yes, but living with MS as a family is about adapting and more importantly preparing.
It is understandable after a lifetime of school fire drills or ‘duck and cover’ atomic attack exercises to view safety drills a bit lackadaisically.
A non-ambulatory person, or someone needing assistance, whether physical or mechanical, to get out of bed is not going to hop up and exit the building when fire alarms go off whether in the home care era or the care facility era of living with MS.
Hurricane Katrina forced too many medical facilities to make God’s choices.
When shopping care facilities we restricted our search to one story buildings with rooms with individual air conditioning units built into the wall. Patti needs cooler! In our previous home Patti’s neuro even wrote us a RX for a window air conditioning unit. Our house was identified on the medical urgency list for power restoration.
When out and about we have a NMSS Neck Cooler we got in a goodie bag at some MS Walk. It’s a godsend for cooling Patti down and as it wraps around her neck, it super cools the central nervous system.
I keep it in a cooler along with a couple bottles of water – kind of a Multiple Sclerosis emergency road kit to prevent the help me I’m melting impact of heat.
Speaking of memory melting The Kessler Foundation in West Orange, NJ studied cognition among people with MS melting in summer back in 2011. Discovering that even with air conditioning “cognitive scores were 70 percent lower among MS patients on warmer days — those with an average temperature of 66° F (18.9°C) — than on days when the mercury hit a mean of only 33°F (0.5°C)” For MS Patients, Memory Melts in Warm Weather.1
Through the years I also had to raise our daughter to be an able bodied able minded kid and that meant surf’s up at the beach. We compromised on either leaving Mom at home attended or bring her with us staying in an air conditioned beach view room. We actually found of a beach hotel that had an ice rink in the center.
We would joke it seemed invented for us living with MS as a family. Returning from the beach we could skate with Patti. Both of us are excellent skaters and as long as the rink was not to crowded the hotel let us push her around the ice. It was treasured time full of laughs living with MS as a family.