News from July 2012
Our friend and awesome blogger, Caroline Kyriakou, shares her view on this warm, humid weather and how it isnt mixing well with her MS! Heat intolerance is common to those with MS and small increases in body temperature can increase MS symptoms. In MS, the demyelinated nerves are unable to effectively conduct electrical impules, making them more sensitive to heat and temperature differences. Depending on the location of the nerve damage symptoms may include increased heart rate, sweating, dizziness, muscle weakness, vision problems, slowed reaction times, reduced energy, and difficulties with attention and concentration. Try and stay cool! Here is Caroline’s feature:
There is a heat wave in a large portion of the US and Boston is no exception. My MS does not like this one bit!
Last week the weather was high 90’s and very humid. Today is not much better. I must say on these kinds of days, I really do not mind being at work, in an office with AC! I am fortunate to have an AC unit at home and my apartment is fairly small, so the one AC keeps the whole apartment cool enough.
On days like these, my MS acts up more than usual, as I am sure it is the same for many people with MS. The heat intensifies symptoms, and for me the most annoying one is the increase in tingling throughout my body. Sometimes I feel like shouting to my body, “Enough already!” You might think “Good thing she lives in New England when there are extremely cold winters!” Nope!! The winter and cold weather have a whole set of negative effects of their own. Luckily me! I am sure that it is not uncommon to many of you too, but it’s no fun.
It’s only the end of July, so there is plenty more summer to go. To survive the heat as best I can, I stay indoors by the AC as much as possible. At times that can be a bummer, but I find a lot of activities to keep me busy, like writing! (I also love reading.) I try to keep hydrated (which everyone should do, MS or not) but sometimes find it difficult as I am not water’s #1 fan. (Please don’t suggest flavored waters, I like those even less than regular water!) I also try to run errands early in the day when it’s the coolest out which works well since it is also when I have the most energy.
There are, however additional things I could do to help myself out, but I don’t. For example, my new car has a lovely remote start function, where I can start the car from indoors. This means if I leave the AC on in the car, when I get inside, it will be nice and cool. I haven’t used that function once this summer. I know, I’m bad! I think it is because when I first got the car I tried to use that function but I would set off the car alarm each time. Eventually a friend showed me another way to unlock the car that wouldn’t set off the alarm and that one time it worked. I guess I would rather get into a hot car than set the alarm off. Even as I type this, I feel silly, so my promise to you is to use the remote start function!!
Here is to surviving the rest of summer!
We are so delighted to be able to introduce everyone to the lovely Luanne DiBernardo, sister of Van DiBernardo, the designer and creator of the fashionable Coolture cooling vest, who has MS and posts on our blog! Luanne helped Van in his endeavor to start the brand, Coolture, and helps manage the company – she is so full of life and positivity and it is a joy to be in touch with her and her dear brother! Here is a special feature from Luanne:
When it comes to remembering – forget about it.
Girl Toddler: It’s Tues-day!
Boy Toddler: No, it’s Too-day!
Girl Toddler: It’s not, it’s TUES-day!!
Boy Toddler: No, it’s TOO-day!
And so my niece and nephew continued, blurring Tuesday into Today, neither aware it was, in fact, Thursday.
I am not sure if my niece really believed the day to be Tuesday, (in which case she was wrong) — or if my nephew was just trying to say “Call it whatever you want, it’s Today”, (in which case he will always be right).
The thing is this: it occurred to me just how much the toddler’s discourse reminded me of conversations I’ve had with my brother Van, who has MS You know Van. He blogs here about hope and determination and the power of belief. Most recently, he posted about Coolture, his fashionable cooling vest. And while Van is one of the few “what you see is what you get” guys who every single day “walks his talk”, he is known to mistake Today for Tuesday.
But the other thing is this: I was recently working with an intern who was entering my personal contact info for website registrations. Without prompting, he recalled my street, city, zip, phone number, cell number, date of birth, email address, and password. At one point he forgot my house number and asked me to remind him. He may as well have asked me to explain the theory of the Black Hole, because my answer would have been the same. I cocked my head with my best “C’mon, you know this as well as I do” gesture, hoping the number would pop into his head – or mine. When neither of us spoke, I chuckled. Then I was embarrassed. Then I blurted “279”! The intern gracefully offered, “let’s look it up”. After his search, he entered the familiar numbers in the empty spaces, and I felt I was seeing a dear old friend whose name had briefly escaped me.
I felt like Van. Except that Van knows his address. He knows good design and how it evolves. He can quote his favorite philosphers, and remembers that it was 1975 that Diane Von Furstenberg introduced her iconic wrap dress, and 1966 that Valentino introduced his all-white collection. Rather, I felt like Van must feel when I take him to a doctor appointment that was two weeks earlier. Or when I drop him off for a dinner engagement after first knocking on three wrong doors, (though one of those wrong doors eventually became a new friend!). Forgetting my house number, and morphing from amused to confused, allowed me to feel like Van must feel several times a day. MS can cause mental confusion, especially when the body is stressed. Especially when the body is overheated. Especially when nobody seems to understand.
So I say this about MS and mental confusion: MS or no MS, we are all forgetting what should easily be remembered. We have become a hurried and harried nation. Do not always confuse your confusion for MS. Though in fact it may often times be the culprit, remember that we are all forgetting what should easily be remembered, because we are being asked to remember too much!
I am giving you the license to cut yourself some slack. Chuckle about the small stuff. Boast about what you DO remember. What you don’t remember today, you might remember on Tuesday. Even if Tuesday really is Thursday.
The 2013 Race to Erase MS Gala will take place May 3, 2013. It will be the 20th Anniversary of the gala, and we couldn’t be more excited for this special event! The MS Forum & Expo will take place May 4, 2013. Make sure you save the date!
Check out some brief videos from our 2012 MS Expo and Forum held May 19th, 2012 at the Hyatt Regency Century City. There is a great MS Reearch Overview from the forum and a video with some Messages of Hope from our MS forum panelists.
Check out the videos here!
The 2012 MS Forum Panelists
Enjoy! More extensive videos from the MS forum discussion will be coming soon!
We couldnt be more excited to share with you the launch of Coolture’s Cooling Vest! Heat can exacerbate the effects of multiple sclerosis, and Coolture™ introduces the first cooling solution to help you feel good while looking fabulous! Every fabric used in the Generation One cooling vest plays a role in assuring maximum cooling. Van DiBernardo, the mastermind behind the Coolture vest, has MS and is such an inspiration! Once a shoe designer for DKNY, his passion is to continue to design and help others! He makes a dynamic duo with his sister, Luanne DiBernardo, who is a part of the amazing Coolture team! Here is their update:
“Never, never, never give up”. Winston Churchill
COOLTURE™ LAUNCHES STYLISH COOLING VEST
It was May 2010 that I traveled from Buffalo to the Nancy Davis Foundation Expo to introduce the stylish cooling vest I designed and would soon be manufacturing. A woman named Donna Hester won our raffle to receive the first cooling vest that came off the production line.
It would not be 2010, but rather July 2012 that the first Coolture™ cooling vest would come off the production line. And with great anticipation, today is the day we finally ship that vest to Donna Hester. For me, the lesson of this journey is chilling (no pun intended). Because almost, I gave up.
When I designed for DKNY, the fruits of my labor were realized season to season. The fruits of launching a stylish cooling vest has more resembled my efforts to overcome the complications of MS: always a challenge, always an unexpected change, always the hope that today is the day. Thankfully I didn’t know it would take three years to get here. I only knew it as one day at a time. In this challenging and patient way, Donna and Coolture™ are sharing a long-anticipated today.
It has been a four-year dream to introduce a cooling solution that has integrity; one with quality athletic fabrics and styling that respect the heat intolerant as people, not “patients”. You will notice when you visit the Coolture™ website that our message and my design is aimed for the capable as well as the compromised. The need to keep cool should not be separated from our need to feel good about ourselves. Under no other cooling “roof” will you find a fashion designer with MS working alongside a CEO with patents in cooling technology – two unique reasons why Coolture™ can and will continue to design products that care about how you look, while allowing you to care about how you feel.
We are ecstatic to feature another amazing blog post from Caroline Kyriakou who shares great insight about the everyday ups and downs of multiple sclerosis. She is an inspiration and has such a positive outlook on multiple sclerosis and life experiences:
Sometimes MS makes me feel older than my age.
Since being diagnosed with MS in 2006, there are changes I have had to make to my life. For me, they have been fairly easy to make, but it did take some time to figure out what needed to happen.
Mostly the changes have had to do with my social life. These days if I am not in bed by 10pm, I pay for it the next day. I work full time as a receptionist in a periodontal office so something as simple as meeting friends for dinner after work can throw me off. On the weekends, I try to do my errands early and if I meet friends, I try to meet them for lunch or an early dinner. Of course there are times when I make exceptions, and just plan to have the next day to recuperate, even if it means taking a day off from work. That doesn’t happen too often but there are events I don’t want to miss out on, like if there is a concert I want to go to or some other special occasion. Knowing that my body needs time to get back to “normal” has made things much easier for me.
It can be difficult explaining to friends why I can’t stay out as late as they would like, or why I can’t do anything after seeing a movie in a theater (though I have just about given that up) or go out on a day that is nearly 100 degrees! I found that this has gotten easier over the years as I have been able to discover what works best for me. I explained to friends that it wasn’t that I didn’t WANT to do these things, but I physically couldn’t handle it. Some friends were more understanding than others. Fatigue is one of the most common symptoms of MS and being one that you can’t see makes it even more difficult for people to understand. Everyone gets tired, but MS fatigue is an entirely different feeling.
MS also makes me feel older than I am when there is a lot of walking involved. About 8 months ago, I bought my first car! Before getting my car I would depend on other people for rides, mostly from my Mom (thanks Mom!) and take public transportation. Even with transportation at my finger tips, sometimes there is still a lot of walking to do to get around the city of Boston. My last relapse, over 4 years ago happened after walking too much. My legs go numb and get tingly after walking even short distances and standing tires me out. Even moving my arms in a repetitive motion makes them get numb and tingly. After resting, the symptoms go away, but it’s never fun to experience. Of course when it is warm outside everything is worse and right now Boston is having some very hot weather — which is why I am home typing this right now by my AC!
So… I am thrilled to now have a car of my own! I still use the “T”, Boston’s subway service, to get into the city and have the added luxury of going wherever I need to on my own time with my car. With my 6 year diagnosis anniversary upon me, I am glad I have figured out what helps me feel as well as possible and with my new car I feel that I have gained a new found independence. I guess MS doesn’t ALWAYS make me feel older than my 32 years!
Caroline Kyriakou was diagnosed with MS in 2006. She enjoys reading, blogging, and is working on her first book. Caroline volunteers as a mentor through MS Active Source. Find her Facebook MS Support group Friends Against the MonSter here and you also can ‘like’ Caroline’s page on Facebook by clicking here! You can find additional blogs by Caroline on MS Relief. Caroline lives in Boston with her husband, Abe.
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