Manicured Sons

I love my sons, they each have such different personalities and tastes. My oldest is very active and enjoys parkour, video games, reading and writing. My youngest is very empathetic and enjoys low key video games, reading, animals and legos.

My youngest ask for nail polish like mine a while ago and I figured it is harmless, if it makes him happy and it doesn’t hurt anyone I would do it. He proudly sported blue nail polish until it wore off though he was frantic at the thought of going to school and having particular people notice because he said they were mean and would make fun of him.

I used that fear to make a teaching moment that I wish I had when I was younger, also at the age of 7. If it makes you happy and feel good about yourself, it does not matter what other people think. You want a temp mohawk with blue gel, awesome, just don’t complain when I have to wash your hair, nail polish, cool what color buddy?

Long ago, should be the days we tells boys and girls they can’t do something because it is for the other gender only. I was a tom boy when I was growing up and my dad taught me how to work on cars and build things. Those skills have been mostly forgotten since MS has wreaked havoc on my brain but I am glad I had them.

I would much rather let my son learn to love himself at a young age and explore things now while he is young than wait until his a teenager and start rebelling because he doesn’t feel accepted as he is at home.

What do you think, should we let our kids be kids and love themselves or make them feel weird for behaving “outside the norm”?

Summer Heat and Multiple Sclerosis

Summer time brings to mind beaches, swimming, vacations, outdoor activities with your children. For those with MS, it means that but it also means cooling vests, air conditioning and if your MS gets aggravated by the heat, increased symptoms. This effect was first noticed in 1824 when Charles Prosper Ollivier d’Angers put a patient in a hot bath and noticed worsening symptoms. Wilhelm Uhthoff noted that this not only occurs with patients in a hot bath but also with increased core body temp due to exercise and activity.

“Demyelination produces alterations in saltatory conduction, slowed conduction velocity, and a predisposition to conduction block. An estimated 60–80% of MS patients experience temporary worsening of clinical signs and neurological symptoms with heat exposure.”  In addition, lesions can occur in parts of the brain that manages temperature regulation.

A report on hypothermia in MS lists different MS patients who died due high temp levels and the inability to regulate their temperature. A temp of 32 degrees Celsius (89.6 Fahrenheit) caused the death of a female MS patient in her early 60s  in 2018. I feel this is not discussed as often as it probably should be. At minimum I think the doctors should be advising their patients of possible issues rather than finding out on their own. There are people newly diagnosed that don’t do research because they believe their doctors will tell them what they need to know.

“Fatigue during thermal stress is common in MS and results in decreased motor function and increased symptomatology likely due to impairments in central conduction.”

How this shows up for me means no hot coffee, hot beverages increase my core body temp so even in the winter I drink iced coffee and iced tea. My house is set to 74 degrees Fahrenheit during the warmer and hot months. When the ambient temp reaches 75 all of the nerves in my body react, electricity pulses through every nerve causing a ridiculous level of pain.

Things that can help cool you down after exposure to heat or increased core temp are frozen treats, ice cubes, ice packs on your body, cooling vests, very cold drinks, and cool showers are some that work for me. I choose to spend the hotter parts of the day and season in side where I can regulate my body temp because sometimes it is days before my body recovers from over heating.

I have tried several types of cooling vests, all are meant to be worn close to your skin under your clothes. The cotton vest which the style is most like a regular vest in style is fine when you put it on but once it is no longer icy it is just very heavy and bulky. I tried another that used columns of ice packs in a lighter weight style vest, but it was still bulky under clothes. The most recent one I purchased is made of the wicking type material used in sports clothes so it is light weight and does not add a bulky layer of fabric when you are trying to cool down. It is a little longer than a sports bra and uses columns of ice in pockets; this allows you to add as much or as little columns and you need and can be replaced fairly easily. It fits ok under a sundress so while it will still be noticeable it looks more like a bra than a weird accessory and replacement columns are small enough to fit in a lunch box sized cooler if you are going to be out for the day.



Hypothermia in MS

7 Strategies for Coping With MS Heat Sensitivity