Spring Into Action!

By Kiara Tatum

With warmer temps here, it finally feels like spring in the air.  Keeping that in mind, it’s time to get outside and spring into action.  It’s not easy for young adults with pulmonary hypertension to do a lot of outdoor activities because of the limitations that our bodies have.  We can’t run or jog 10 miles a day or swim laps.  Here are some tips that might help you get started to getting active this spring.

1. Before you start any exercise or activity program, consult with your pulmonary hypertension specialist.
2. Start slow.  Begin with a short distance and short sessions.  Start walking, riding a bike, or whatever chosen outdoor activity for about 10 minutes per day, at least three times a week, and close to home.  Once you notice that you are able to endure that without becoming too short of breathe for you, then increase your days and distance or time you do that activity.  Then maybe by the end of the summer, you will be able to take a nice long hike or ride on a bike trail.
3. Be prepared.  Make sure that you have bottled water with you or access to clean water, wear sport socks and appropriate sneakers, and lightweight clothing.
4. Don’t be ashamed to rest.  If you are doing an outdoor activity, and you feel yourself becoming short of breathe, dizzy, heart palpitations; then just stop and rest.  It’s nothing that you should be ashamed, embarrassed, or afraid to do.  Your body has limitations, and because of your PH diagnosis can’t always push yourself on.
   
5. Pay attention to the temperature and humidity.  Don’t do an outdoor activity if the temperature and/or humidity is too high.  It’s harder to breathe in the humid weather for those with pulmonary hypertension or other lung illnesses.  
6. Don’t do it alone.  Sometimes what’s great is to have a friend, family member, or even your dog tag along with you.  Just remember that you need to set the pace for the walk, hike, bike ride, or whatever chosen outdoor activity.

Whatever outdoor activity you choose—walking, bike riding, etc., enjoy it and have fun!  It feels so good to be able to be outdoors and enjoy the warm fresh air.

Get Up and Get Moving!

By Kiara Tatum

February is Heart Month, and it’s time to get active.  Having PH slows us down, but don’t let it prevent you from physical activity. There are plenty of ways to move your body throughout the day.  Here are six helpers to get you moving:

1. Complete 30 minutes of physical activity a day.  This 30 minutes can be two or three segments of 10-15 minutes if you can’t do 30 minutes at one session.  Chair Yoga and Pilates are great workouts for people with PH.  But talk to your PH doctor before starting any exercise regimen.
2. Go for a walk.  I know it may be cold out now for some, so wait until the warmer temperatures.  You can take a 30 minute walk around your neighborhood.  If you have a dog, take him/her on the walk with you. If capable, go on a nice nature walk or hike with family and/or friends.  The inclines and not smooth paths are challenging, but are a great workout. 
3. Plan physical outings.  Trips to the mall for window shopping can be great exercise for you, your family and/or friends.  It keeps you walking and talking, and not sitting on the couch watching television.  A couple of weekends ago my friends and I went bowling. It was a great physical workout for me, and I spent quality time with my friends laughing and attempting to bowl.
4. Do housework.  Vacuuming the floor, dusting, sweeping, taking out the garbage, doing your laundry are great physical activities to keep your body moving for a while. Cleaning can be hard work, so go at your own pace.
5. Turn up the music and dance.  If you love listening to music, try music that makes you want to get up and dance.  I love to listen to Taylor Swift’s Red album because it makes me want to move.  I have great fun dancing and singing along to my favorite songs.  Whether you’re good or bad at it, dancing means your body is moving and grooving to the beat.
6. Play.  Play video games with the Kinect or Wii for movement.  Playing jump rope, hop scotch, or just playing uses energy, and you don’t even realize because you are having fun.  Playing with my nephews and nieces always takes lots of energy, and afterwards I’m always ready for a long nap. It also gives me a chance to behave like a kid again and have some fun and laughs with my family.

Remember that doing something each day and keeping yourself moving is better than doing nothing and staying sedentary.  It can help your heart get stronger, especially for those with PH.  Do what you can, do something you enjoy, have fun, but more importantly get moving!

Sometimes It's PH!

Bringing PH Awareness Your Community

By Kiara Tatum

Doctors are taught in medical school that if they hear hoof beats, they look for a horse not a zebra.  Meaning if a patient is describing symptoms of shortness of breath, fatigue or other common symptoms, then doctors assume common ailments such as Asthma, Obesity or COPD.  However, we as Generation Hope PH patients know that sometimes it’s PH.  So it’s up to Generation Hope to spread the word about PH and since PH Awareness Month is around the corner in November, it’s time we take action.

 

With help from Yusetty Medina, Community Advocate Manager from Accredo, I set up an informational table at my local mall to hand PH pamphlets to crowds of people for PH Awareness Month.  The goal wasn’t to raise funds, but to raise awareness about Pulmonary Hypertension for early diagnosis.  I ordered the free pamphlets from PH Association and Yusetty brought informational brochures from Accredo.  There were also goodies to hand out: chocolate, candy and bottled water to key chains, PH Awareness bracelets, flashlights, pens, hand sanitizer and travel size Band-Aid holders.  Together we talked to many different people from the young to old about Pulmonary Hypertension.  This year, I plan to do the same, but with a little more help from my support group to have a bigger impact on the community.

Yusetty and Kiara at PH Awareness Event 2011

You can do it too.  It doesn’t take much time to organize an awareness event.  There have been a couple of Facebook events called “Show Us Your Stripes”, and that’s something that we can all do in November by posting pictures of ourselves, family, and friends wearing zebra stripes and posting pictures online and explaining to Facebook friends what the zebra stripes mean.  Another simple idea is setting up display boards for the month of November at your local community center, library, college campus, or wherever you can find a spot that will be seen by lots of people in your community.  You can also raise awareness through the media by telling your PH story with your local newspaper.  Additionally, if there is an event already planned in November, maybe you can have a table set up there about PH, such as a local school concert.  Or request an Awareness Month proclamation from your mayor and/or state governor.  There are other great ideas for you to get involved this PH Awareness month.  Check out PH Association at http://www.phassociation.org/AwarenessMonth2012 for more ideas.

I have said it before that the PH journey isn’t so smooth, but by each one of us spreading PH awareness to others, we can make a difference.  We can help others who may be experiencing symptoms of PH get the help and early diagnosis needed to stop the progression of PH.  Don’t let another November go by without doing something.  Take action!!!

Staying Active with PH: Melanie Kozak

I was recently involved in a very interesting webinar called “Staying Active with PH.”  The participants were two nurses, another pulmonary hypertension patient and myself.  The nurses were extremely educational talking about pulmonary and cardiac rehab and how exercise can be beneficial (following discussion with your doctor and when done in a controlled setting).

For my part I decided to talk about things to do when you aren’t feeling well enough to exercise.  I do understand exercise is important when you can do it but here is my list of the things I enjoy doing to remain upbeat and active on my bad days.

• Spending time connecting with my PH friends online
• Playing games online
• Going to bingo Tuesday nights with my aunt
• Going out with friends to dinner, the movies or just hanging out (I make sure my friends know my limitations in advance!)
• Shopping whether it’s going out or shopping online
• Cooking and trying new recipes
• Spending time with my husband … can be playing video games, watching a movie at home or just talking
• Going out to eat
• Redecorating my house (okay so I just come up with the ideas and hubby does the work!)
• Traveling
• Scrapbooking my travels and friends/family
• Reading
• Volunteering for PHA:

-          Working on the PHA patient-to-patient support line

-          Running two support groups and starting a third support group

-          Attending other meetings in my area

-          Writing for the Generation Hope blog

-          Helping out with fundraisers for other PHers

-          Moderating Generation Hope in Action

-          Advocating for PH

-          Creating awareness through videos

-          Connecting with other young adults to help them become more active

 

These are just some of the things I do.  As you can see a lot of my time revolves around PHA!

So what do you do to stay physically active?   And what do you do on your bad days?

A New Year, Get Active!

It’s the start of another year, and most people are working on the traditional New Year’s Resolutions: eat healthier, go back to college, change career, lose weight, work out more … you know, the usual resolutions! But those of us with pulmonary hypertension don’t always have the same priorities as others. One of our top priorities is to remain active, even though, the simplest task can be difficult. But there is a way to get active this year that’s a little different from the norm. You can start your new year by becoming involved in the community that surrounds you.

There are many different ways to get active in the community. Why not start with your local PH support group? You can co-lead a support group, help with getting sponsorships for meetings, make telephone calls to other members or local PH doctors, help with topic ideas, get speakers for your support, help with a PH awareness event or fundraiser, and much more. And if there isn’t a local support then create your own support group. PHA can help you get started on creating a support group, spreading the word to other PH patients in your area, and help you maintain your support group. For more details visit PHA.

I started my support group in November, 2008 because it was over two hours to a support group, and I had a chance to give back to the PH community and stay hopeful. PHA helped me to get started with topic ideas, leaders training webinars and information to maintain my group. Through my support group, we have had PH awareness events from participating in a parade to setting up informational tables. It has been a wonderful experience that keeps growing and growing.

If you want to try something different outside the PH realm,there are always not-for-profit agencies. Most non-profit agencies survive on the help of their community volunteers. Generation Hopers can make a difference in the lives of the people in their community or to a special cause. You can work with the homeless population in the soup kitchens serving or cooking meals or volunteer in your local hospital and nursing homes. Sometimes sitting with other patients in the hospital or reading to the elderly for a few hours a week can be really fulfilling. You can even volunteer at your local library, domestic violence shelter, youth shelters, and so many other places. If you need help, contact your local United Way agency for more volunteer sites.

I recently joined a board of a non-profit agency’s new youth program in the local high school, and I have impact on the curriculum development, community events, advertising of event, fundraising ideas and much more. I’m so excited to get more involved in this great new program this year.

Where I dedicate most of my time and energy is at my church. I do this because it gives me the most spiritual and emotional fulfillment, and gives my life purpose and meaning. I joined my church’s Website Ministry and Youth Ministry. I love the Website Ministry because I do most of the work from my home computer and I use the least amount of energy. I’m able to serve God by sharing information with others without ever leaving my home especially on not so good days. But I wanted to do more and I wanted to serve God deeper, so I joined the Youth Ministry. Working with the Youth Ministry allows me to minister to the youth of my church in different ways. I can be a resource to the local youth and help with coordinating youth program, events and activities. I find it challenging, but I love to learn more of how I can help the youth today and serve the Lord.

Life is more than your PH diagnosis, so don’t let your illness stop you from anything. Get active this New Year! Look at what you would like to do and your strengths, and then match it to what surrounds you in your community. You can make a difference. Getting involved and volunteering in your community keeps you active, gives your life purpose and meaning, and empowers you with hope.

Staying Active with PH

With summer just around the corner I am so badly itching to be outside again. Summer also brings an itch to be more active. Once the frost thaws and the sun is scorching the black top I know I will want to be riding my bike, taking my dog for longer walks, chilling in an inner tube on the lake, walking around town with friends, and hiking through new parks. PH has severely restricted my activity level over the years though.

I have this passion for the outdoors that helped define who I was. I grew up outside playing in the mud, swimming every day in summer, snowboarding and ice skating in winter and hiking through the beautiful colors in fall. Before I was diagnosed I remember things getting harder. I couldn’t ride my bike as fast as my sister anymore. I was no longer the ghosts in the graveyard champion of the neighborhood. After I was diagnosed, things got really bad. I could hardly toss a ball around with my sister without getting severe palpitations. I was also adjusting to the responsibilities and difficulties associated with having an IV medication. I didn’t want to go outside anymore; all I wanted to do was sleep and lay in bed.

But then something happened; my medications began to help. I was able to start walking around with my friends again. I could ride my bike, just at a slower pace. As I did more and pushed myself to get out of my depressed lump on the couch, my whole attitude changed.

I think trying to stay active is a big part of feeling good. Over the 10 years of having PH there have been a lot of ups and downs with how much activity I can handle. Now some days I am so tired and short of breath that getting out of bed is even hard. I tell myself that I’m going to do something like write in my journal or catch up on some of my favorite T.V. shows on these days. You can totally allow yourself the bad days. On the days you feel better though; sometimes you need a little push to get going.

The most important thing is to know your limits. This is best discovered through experience. It is extremely important to listen to your body because how you are feeling is the real judge to how much activity you can handle. There are days, however, where I hardly have symptoms from PH but I am feeling down on myself or maybe experiencing some nasty side effects from all the meds. I find that if I push myself on these days to get out of bed and make myself a big home cooked breakfast I will be feeling better and more motivated to get out of the house and be more active.

Everyone with PH knows that those precious days where we aren’t very symptomatic should not go to waste! So what else can you do to be active? Perhaps try some light exercise. Maybe take a yoga class. This could also be extremely beneficial to relieve stress. I took a tai chi class for 2 years and I must say it was incredibly stress relieving and it really helped me center my breathing and become even more aware of my body.

You could try doing something a little less physical like baking or cooking. There is always the option of trying some gardening or maybe taking your dog for a slow short walk. You could walk around at the beach only going waist deep into the water instead of swimming, or perhaps play in the sand with your kids or nieces and nephews. Even just getting out of your house and having dinner with your friends would be much better than staying at home depressed. Do what you can, and have fun doing it!

There is also the option of Pulmonary Rehab. This is for people who are still symptomatic even with treatment. This program aims to make you feel less symptomatic for a better quality of life and can help you tone your muscles and strengthen your breathing. If this is something you think you could benefit from definitely consider asking your PH specialist about it.

I think staying active with PH can really boost your spirits and help you feel better. Just take it slow, know your body, and don’t feel bad if you can’t do what you used to. It’s important to accept where you are now and be happy with that, even if it means just relaxing for a day. Does anyone else have ideas for staying active with PH? I hope you all have a fun, active and healthy summer!