Need inspiration to stay active? Here you go

Posted by pacathy @pacathy, Sep 10 9:03am

I sometimes need a additional inspiration to keep exercising. In the last couple weeks, Sue and Lynn have provided it. Today, a story about this woman with bronchiectasis, Mary Kitlowski, popped up from a site I'm not familiar with. I googled to verify and found this article in RW, Nov., 2019. Wow. 34% lung capacity and oxygen dependent for activity and she finished NY. Pure grit! I'm blown away and think I'm getting the message.

I hope others with bronchiectasis, find it inspiring, too.
"Mary Kitlowski has been training to cross the line at NYC for five years. Ever since she was put on supplemental oxygen tanks because of a rare lung disease known as primary ciliary dyskinesia, she wanted to show that anyone in a similar condition can do anything they set their mind to.
In 2017, Kitlowski attempted NYC for the first time, but because she had been fighting an infection leading up to the race, she had to stop after mile 18. This year, she was healthy, and determined to finish. Despite having only 34-percent lung capacity, Kitlowski wants to prove that anyone can be active, even if they have to get creative in doing so.

For her race, Kitlowski wore a portable oxygen concentrator, which required battery changes every few hours. Her husband carried them alongside her as the two took on the five boroughs. She ran for the National Organization for Rare Disorders, and finished in 9:50:26."

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

pacathy | @pacathy | 4 days ago

In reply to @laureltn "@pacathy I've done a little reading on the bag service and it's a consideration. We'll just..." + (show)

@laureltn It's actually easy and flexible. If you check for company that services your route, you just fill out bag tag in morning with next destination and they pick it up.

cavlover | @cavlover | 4 days ago

In reply to @sueinmn "@pacathy Thanks for this reminder - we can do far more than we give ourselves credit..." + (show)

@sueinmn

@pacathy Thanks for this reminder - we can do far more than we give ourselves credit for. How wonderful that she has such a supportive partner - it means the world not to be alone in this "race."

We just did a 16 day, 4000 mile road trip, living in our tiny camper, visiting 12 states and 2 Canadian provinces. For someone with BE and asthma, traveling by private auto and pulling your home behind is ideal, safe shelter, no need to be in crowds, ability to control a lot of your environment. In addition to bronchiectasis and asthma, I also have coronary artery disease, rheumatoid arthritis and a few other challenges. My husband is several years older and has a similar list of challenges. His cousin, about to turn 88, just returned from 6 weeks in Europe, and encourages us to "keep goping".

We could easily and safely attend an outdoor music festival, sightsee, hike, visit with neighbors in the campgrounds with minimal risk. We filter the water in our camper with a dual filter system, 2 micron & .2 micron, and sanitize the tank between trips. So even showers are safe!

Next month, our risk will be higher, but we have chosen to take a long-delayed trip to visit family in Europe. It involves (masked) flights (our relatives are also older) and staying in a private home for 10 days. My nebulizer will work overtime, but they understand. That last week will be a tour in Italy, where we will share a tour bus on and off for 6 days - we will decide "enscene" when to mask. Fortunately we stay in a single hotel, and they are ready to accommodate our needs.

In preparation, we have updated all of our vaccines and our kit of "just in case" medications. We plan to continue to travel, into our 80's if possible, so we work these out in advance with each of our docs.

My former ID doc, who has moved on, my former primary who is retiring, our current primary, and my pulmonologists all encourage us to keep on moving.

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@sueinmn you are always such an inspiration to me! Handling your Bronchiectisis with such great care and common sense has encouraged me to live my life to the fullest.
For this, I thank you.
Warmly,
Susan

manorhill22 | @manorhill22 | 3 days ago

She is phenomenal and certainly an inspiration to all.

manorhill22 | @manorhill22 | 3 days ago

In reply to @sueinmn "@pacathy Thanks for this reminder - we can do far more than we give ourselves credit..." + (show)

@sueinmn

@pacathy Thanks for this reminder - we can do far more than we give ourselves credit for. How wonderful that she has such a supportive partner - it means the world not to be alone in this "race."

My former ID doc, who has moved on, my former primary who is retiring, our current primary, and my pulmonologists all encourage us to keep on moving.

Jump to this post

@sueinmn

manorhill22 | @manorhill22 | 3 days ago

Sue,
You have always been an inspiration but your current activities and future plans are over the top. Thanks

laureltn | @laureltn | 2 days ago

In reply to @pacathy "@laureltn It's actually easy and flexible. If you check for company that services your route, you..." + (show)

@pacathy I definitely need to do more research. I know some are more like organized groups, but this kind of service sounds like it would be more my style!!

thanks so much,
Laurel

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