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.

Sources:

wcmea_newsletter_fall_2010

Hypothermia in MS

https://www.physiology.org/doi/full/10.1152/japplphysiol.00460.2010

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2980380/

https://www.stuff.co.nz/national/100921402/christchurch-woman-with-multiple-sclerosis-dies-of-overheating

https://www.webmd.com/multiple-sclerosis/news/20150527/ms-may-raise-odds-for-earlier-death-study-finds#1

7 Strategies for Coping With MS Heat Sensitivity

 

 

 

Vaccinations and the Immune Compromised Public

New York County just banned children in public places if they are not vaccinated for the Measles. Holy cow, please do not start freaking out as I have not even said anything yet.

I am 100% for people making their own choices for their family and their kids, that being said, I am also for not becoming deathly ill because of those people’s choices. I made a comment on Facebook about how I am glad this is the case because people who have immune issues should not have to be subjected to diseases that there are vaccines for when they are going about their daily business.

In case you are unaware, when your immune system is compromised that means even if you were vaccinated for the disease it no longer matters, you are at risk because your immune system does not work the way it is supposed to.

It got so many comments, one person in particular told me I should stay inside my house forever. (Thanks for that lady, I wasn’t starting a fight I was just sharing my personal opinion.) Not once did I name call a person, call them stupid or an idiot or say that their opinion was not valid. Other people did, some were very rude actually and I get that you can be passionate about a subject but if you follow my blog than you know that I want to be a better example for my kids on how we should treat people and I do try to live what I am preaching to my kids.

Another person pointed out, rightly, that I did not choose to have the immune system I am currently blessed with, and the chemo medication I take to keep it from eating my brain. (I am paraphrasing here because I didn’t share why my immune system was compromised or that I take chemo medication.)

MS shows up differently for each person who has it, different medications work for different people and the severity of symptoms ranges widely. For me, MS shows up like a giant a-hole villain who is getting paid to make my life a living nightmare. There are days when I get questioned about why I have a service dog because I am walking normal, there are other days where I probably look like a total drunk and it’s obvious that I could not stand upright without him.

Now I think kids should get vaccinations, I am okay with whatever that looks like; the standard schedule, a longer schedule whichever. A kid just spent 2 months in the hospital for treatment of Tetanus for crying out loud, and I know that there are still people who believe these shots are dangerous but science says that is false, also the kid with tetanus cost $800,000 to cure. The shot is free with insurance!

Now if you are a parent who doesn’t want your child vaccinated, fine, please home school them and keep them in your house, because I just realized it’s your choice to make and people with crap immune systems should not have to worry more or become shut-ins because you don’t want to vaccinate your child.

We as people and/or parents, make choices every day, please be mindful of the entire human population when making choices. I vaccinate my dogs so they don’t get sick, my kids because I love them and want them to be as healthy as they can, myself so I don’t die of something stupid. Also, I don’t drive into oncoming traffic putting other people’s lives at risk because I think it’s a better way to drive.

 

Getting My Service Dog

I went through the application and interview process with Freedom Service Dogs and was so happy and grateful when I was accepted. The next step was to wait on the waiting list until they called to tell me they had a dog that they thought matched with me.

What this means is matched for personality and needs. I was asked to come meet my potential service dog. It was love, he was awkward, silly and had a beard that made him look like an old man. It was summer when we met so I was wearing a dress and he got his head stuck in it and all confused trying to get out. It was hysterical. At the end of the meeting they asked me if I was interested in him and I jokingly said he could either be my service dog or they would have to chase a disabled person with a dog to get him back.

Freedom Service Dogs did all the training prior to when I started working with him. He had all the tasks I needed ready in his brain. Now, it was my turn to learn the commands, hand signs and him to learn about me. We had several weeks of training, several weeks of bonding and more than two years later I cannot imagine my life without him. Some days going out is kind of like having a toddle in toe, because you have to get them dressed, make sure you have treats (aka snacks) and know that it will take longer doing whatever it is you’re doing because people will stop you and ask questions.

All of that is worth it though, I don’t have to focus on my feet anymore because he does that for me. If I drop something I know he will pick it up, I know I have my own little support system when I am alone, because he is there to help me.

He is allowed to go everywhere, so if you have a service dog, know the laws in your area. The US has ADA laws that allow you to go everywhere the public goes and bring your service dog along with you. Do not allow people into bullying you not to be somewhere.

The laws, rights and trouble I have run in to will be my next service dog post. So if you are interested in knowing more about that, keep an eye open for that.