Uhtoff’s Phenomena and Summer Fun with MS

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.

Editor’s note: We are extremely saddened to say that on November 11, 2013, Patrick Leer passed away. Patrick was an essential member of the MultipleSclerosis.net community, providing unique insight and perspective as the primary caregiver to his wife, who has MS. His heartful writing continues to reach many. He is deeply missed.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
1. http://www.everydayhealth.com/multiple-sclerosis/0218/memory-melts-in-warm-weather.aspx

Comments

View Comments (7)
  • Carrieb
    5 years ago

    Each summer gers tougher. After a long winter I’m going to try and not complain about the heat and how bad it makes me feel. I become stupid and physically challenged. In order to try and hang out with my family, I stay wet. The pool, the ocean, the spray bottle, the hose, etc.
    I am usually the only or one of a few who stays in the COLD ocean and rides waves at 48!

  • Maris
    6 years ago

    We live in Israel, but on a mt in the desert, so we usually have pleasan

  • Maris
    6 years ago

    Sorry, this got all chopped up. I guess it’s not a good day for me to write.

    Oh well,
    Maris

  • Maris
    6 years ago

    . . . Sorry again. He stops me from overdoing.

    We’ll keep this up for as long as I’m able 😉 .

    Feel good,
    Maris

  • jordandossett
    6 years ago

    I don’t know how to explain it either. I have one of those medical alert necklaces that simply reads:

    SYMPTOMS WORSEN WITH HEAT:
    Speech, Vision, Hearing

    It’s not like I could fit…

    WARNING, IF YOU MAKE THIS AIRPLANE SIT ON THE TAR-MAT, OR YOU ASK ME TO DO SOME 3K RUN WITH YOU EVEN THOUGH IT IS AUGUST, OR EVEN IF YOU DROP ME OFF BUT FORGET TO GIVE ME THE TICKETS AND I HAVE TO STAND OUTSIDE THE DOOR…

    MY SYMPTOMS WILL WORSEN WITH HEAT.

    Educating our family and friends is a challenge. Just look at this website. It was not here 5, 10 years ago. It is amazing, but is my girlfriend reading it? Is the domestic partner of 14 years I left because I was so full of justification to live on my own and tired of being invisible reading it? Now skip past our loved ones to the teller at the bank or the people at work. My girlfriend works somewhere where they think that it is ok that the AC is not function some days. Their reasoning… well they are open on a quasi holiday and the building did not turn on the main AC. If I worked there I would die. Her not getting that makes me rage. I do not know the best way to educate people about MS. I guess it is a “one day at a time” thing.

    Jordan

  • sharon
    6 years ago

    I get it. Although my heat intolerance is not as severe, It certainly gets me. I tried explaining to a friend how it is They said I drop you off right at the door and pick you up,15 seconds couldn’t cause you to get so bad. yeah right!
    I don’t know how the body knows its hot and humid but it does! Sharon

  • Rhea D Becker
    6 years ago

    I thought this was a great article. Gave lots of good information and some validation as well. Keep on Keepin on 🙂

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