If you have “limited activity”, what types of things do you do to stay active?

[Jo Ann white]

I cook…a lot! Mostly work at the kitchen table and this gets me up and moving briefly often.

[Brittany Foster]

Jo Ann, I think that it’s great that you cook and stay busy that way! It sure is a great way to pass the time too. What types of things do you enjoy making the most? I always loved making any pasta dish. I just made a great one with my boyfriend over the weekend with a garlic creamy sauce with spinach, mushrooms, and tomatoes. We ended up taking it to a party that we went to and everyone loved it. It was almost like a pasta salad !

[Jo Ann white]

I make a meatloaf with ground veal, garlic, lemon pepper, grated lemon rind, lemon juice, an egg, and plain Panko breadcrumbs topped with sliced lemons. Lots of protein and no salt! Also lasagna with lots of cheese and spinach and herbs with unsalted chopped tomatoes or low salt spaghetti sauce. Steamed spinach with unsalted butter. Roasted asparagus with olive oil, pine nuts and Parmesan. Plus lots of hard boiled eggs and cut up fruits. Hard to do low salt and lots of fruits and veggies with prepared foods! Also keep unsalted cashews by my exercise bike or in the car for protein after exercising. I use the toaster oven and microwave a lot to keep the oxygen tube away from the hot oven but was told in rehab to put cannula on from back of my head instead of under my chin to keep the cord behind me. That worked great making Xmas cookies and other holiday goodies.

[jen-cueva]

Hi @jo-ann-white, I know this is older, but each time I scroll past your cooking descriptions, I become hungry, LOL. How are you doing? Do you continue to enjoy cooking? Please let us know how we can support you.

[Brittany Foster]

Jo Ann,

That really makes my mouth water for all that food! Sounds delicious. I love that you are making a lot of your own food and watching the salt intake but it still seems like everything you make is so flavorful and yummy! Especially that meatloaf, that sounds delicious ! Really unique using the lemon too. Good advice from the rehab too about the oxygen cannula. I have seen people wearing it behind their head instead of in the front of their face and I bet that would help with making sure it’s not getting too hot or melting the plastic. I really enjoy baking especially for birthdays or holidays ! Making cake balls is one of my favorites. I make them with the kiddos I babysit for too and they love doing it and dipping them. It can get messy but that’s why I have TONS of parchment paper lying around so it makes for an easier clean up!

[Margie Novak]

Jo Ann and Brittany, it is nice to read about cooking. That is one thing I would like to do but I get extremely tired from standing. Do either of you have that problem and, if so, how do you alleviate it? I know I could sit down and chop and stir things but then someone would have to be in the kitchen doing things for me. For some reason, with PH, lately it seems like I always need to have someone else around to “help” me with something. But, I love to bake… Unfortunately too, I have to limit with the sodium and all. I do not have to tell either of you… some times this illness can really difficult to handle. Take care

[jen-cueva]

Hi @margie-novak, how are you doing, my PHriend? I haven’t seen you post in some time and wanted to check-in. PLease update us if you’re up to it.

[Brittany Foster]

@margie-novak I know that for me it is a challenge to stand up for too long because I have a lot of blood just pooling and not really getting circulated in my body as much. Something that used to help me with this would be to have one of those rolling chairs to sit on. I really liked the medicine ball rolling chairs. I used it in my classroom as a teacher too and it helped take off some of the stress on my body from standing up all day. Maybe something that is more adaptive and mobile like a rolling chair or something would be able to help you? Or one of those walkers that you can rest on if you have to. I have seen people use those just to provide some extra support if they know they are going to be up for an extended amount of time ! If it allows you to complete a task then WHY NOT!?

[Jo Ann white]

Daily half hour of aerobics on the exercise bike and getting up and moving around have really helped with the leg swelling. And I generally feel better. Not using a lot of resistance or uphill on the bike and use an arm cycle if I can’t make it upstairs. Pulmonary rehab said aerobic exercise was critical to maintaining my current activity level (5 liters oxygen 24-7 for 8 months now) and so far that’s been true. Reaching and bending leave me dizzy and hurting but anything else in moderation seems ok.

[Brittany Foster]

Jo Ann,
yes reaching and bending actually limit your flow of air so that is probably why you feel worse when you do those things. I know that I really have a hard time bending down to get something or when I am cooking if I have to reach for a pan below me and then get up it’s like I feel that heavy head rush all of a sudden! Do you get that head rush feeling too that I’m talking about? Sometimes I have to remind myself to put the pans in a better to reach area. Even doing something like hanging clothes on a hanger and reaching up to hang them up makes me dizzy ! I am glad that you are able to get that exercise in though and maintain the function and level of oxygen that you are at now. That is important. As long as there isn’t a lot of decline happening I’m sure the goal is to keep you stable where you are.

[Jo Ann white]

Brittany
Yes I get the head rush you describe. I have also moved the things I use most to the most accessible shelves. And this months 6 minute walk and lung function tests were actually slightly better than 3 and 6 months ago so meds are helping but it is also because i am more comfortable with supplementary oxygen and make it a point to stay as active as I can without overdoing it. Not sure what effect being confined totally to the house will have tho!

[Colleen]

Hi Jo Ann, I just want to mention that I was happy to read that you are experiencing some improvement. It’s great to hear slightly better than slightly worse. I hope the meds continue to create better stability for you.

[Brittany Foster]

Jo Ann, do you have a space in your house that you can turn into a workout room of sorts? I have spent a lot of extended time in the house so if you need some good recommendations for some indoor workout videos to try out, I think I am going to start a post with some of my favorites and others can add to it!

[Randy]

So far, I have only done the 6 minute walk only once about 1-1/2 yrs ago! And I didn’t even finish the 6 minutes, I had to quit at 5:45.

Nowadays walking from the house to the car pretty well does me in. That being said, I occasionally meander about 100′. Usually when I am stationary and using the POC I have it on the three setting to keep my O^2 above 90.
If I move from place to place, like meandering or going into a store or a restaurant, I crank it up to 4 or 5 which does little good, and my O^2 will drop to the mid 80’s.

When I get that far I am extremely gassed, like I just ran the 440.

Makes me wonder how much longer I have.

I just don’t know if I’m overdoing it or not doing enough.

[jen-cueva]

Hi @ardyyurtyahoo-com, I am sorry about the decrease in your physical functioning. I, too, have not had a 6MW test in years. But, I use a wheelchair for distances.

As you mention, if I am going more than a few steps, my O2 is not staying up. I hate going into a restaurant and having to sit and rest before I can order my drink.

It is not uncommon for us with PH to feel like we ran a marathon after small activity. YOu are not alone.

What does your PH team say about this change in your activity level? Any new treatments that they can add or try?

[Colleen]

@ardyyurtyahoo-com this is one of the both physically and emotionally challenging parts of this disease. Not having the energy or the breath to go the distances that you use to can be a difficult change to accept.

My son often used a wheel chair for long distances and at one point we even got him a mobility scooter. It gave him a little more independence.

I was wondering the same thing as @jen-c, what is your doctor’s reaction to this decline? Sometimes a change in medications, or something added can make a difference in quality of life.

One tip for the 6 minute walk…have someone take you in a wheelchair to the area the test will be done. That way your energy is saved for the test and not used up walking the hospital or clinic. This is what I use to do for my son.

[jen-cueva]

That’s an excellent tip, @colleensteele. Often, when I think I walk with my oxygen, my hubby suggests using the wheelchair, so I don’t exhaust myself by just walking in somewhere. This is not only to appointments but to larger stores and or restaurants, etc.

I did have an electric scooter/wheelie for a while but only used it a few times, so I sold it. The one I had was a hassle to load and unload. Was Cullen’s scoother lightweight and foldable?

Thanks for sharing; perfect reminder.

[Randolph Reynolds]

Due to my O2 tank I am somewhat limited but I do walk when I am down town but there are limits.  I also ride a stationary bike about six days a week for 2 miles or more.  My limit is a combination of heart rate and whether I feel a little faint.  Jen’s use of an ebike has merit but I haven’t made the attempt to get small oxygen bottles so I can use a back pack.  We are somewhat caught in a bind trying to keep our bodies from atrophying.

[jen-cueva]

Hi @ripple76, it is unfortunate that we are fighting to keep our body and muscles from atrophying. I am happy that you can continue to walk short distances. The bike rides certainly do work our muscles. This includes the stationary bike as you ride and the e-bike that I have.

Sadly, I have only had a short ride this year. I am looking forward to when the weather cools down a bit to get back out there. The feeling is unexplainable. I hope that you can obtain some smaller portable tanks to use as a backpack and get outdoors. It is so refreshing and takes more strength than I remember as a kid, LOL.

Thanks for your feedback and for sharing your experience about limited activities.

[Hall Skåra]

Instead of running which I did before I got sick, I now walk. I have a dog which I call my personal trainer because he pushes me to go outside for a walk twice a day. I usually walk anywhere from 30 to 90 minutes.

Instead of biking on a regular bike which I did before I got sick, I now bike on an electric bike. I love it and can bike long distances without any problems. I’ve worn a pulse belt while biking, and I see that my pulse is about the same as when I walk. If I get tired, I simply ask for more help from the electric engine.

In addition, I go to the gym three times a week. I do circle training, but at a low intensity. I scan my phone before starting the circle of ten stations, and each machine is automatically set and adjusted as I do my exercise. This makes it effortless and fun.

In addition, I have gotten myself a couple of new hobbies. I like to take photos as I walk and have bought myself a nice camera. In addition, I started playing backgammon on a competitive level after I got sick. At times, the fatigue bothers me, but it usually goes well since my adrenaline keeps me alert. In 2013 I became Norwegian champion and I later also won London Open during a large international tournament.

Who says that one cannot have an active life even though one has PH? 🙂

[jen-cueva]

Hi @hall-skara, I haven’t seen your post in a long time. How are you managing your PH? What’s new?

Please check in and let us know how things are going for you when you get a few minutes.

[Hall Skåra]

Hi Jen

I am doing fine, thank you! I have just been very busy these weeks. I am responsible for PHA Europe’s WPHD project and it’s a lot of work. And last week I was in Latvia to participate in a Baltic PH conference, and on Thursday I go to Brussel to participate in EPF’s (European Patients’ Forum) general assembly and 20 year’s anniversary. Love my work, but it certainly keeps me very busy 🙂

[jen-cueva]

Hi @hall-skara, wow, that’s impressive! Thank you for your continued work with PH awareness and advocacy.

With all that work and traveling, you probably don’t have much extra time to exercise. Please come back and let us know of any new updates or how your trip to Brussel was.

Safe travels, my PHriend! I’m grateful that you had time to update us.

[jen-cueva]

Wow, @hall-skara, congrats on your championships!

Your story about continuing to exercise and participate in activities that you enjoy is inspiring.

I was diagnosed 16 years ago with PH. I was pretty stable until a bad case of COVID almost took me last year. I am still recovering from that. But I, too, have an e-bike and love it! My husband cycles, so this is a hobby that w can both now enjoy. As I mentioned to @ripple76, I have only been on one ride this year. I look forward to cooler weather here in Texas.

You mention walking your dog as exercise. That is an excellent way to get some steps in and enjoy the outdoors. I am limited with walking distances. But I have been mentioning to my husband that I want to try and do this a few times per week. I am not yet cleared to walk much from my PH docs. I use a wheelchair for distances but am ready to give that back, LOL.

One of the creators of our forums, @brittany-foster, also walks her dog often, and she is amazing. She recently had heart surgery and was back walking shortly afterward.

Thanks for sharing such an inspiring post. Many of our members, myself included, need this bit of hope to help us stay motivated.

May I ask what PH treatments are you currently on? Have any worked better for you, as far as your exercise tolerance?

[jen-cueva]

How is everyone trying to stay active without pushing their bodies too much? I was doing light exercises with 5-pound weights for my arms and legs. I was also doing light yoga and riding my E-bike. This was going well for me before my recent hospitalization.

Since then, I have been trying to add a little. Being in a hospital bed that week didn’t help anything from atrophying. This week I have done two light arm and leg exercise days. I may work on abs today and stretching. Hopefully the weekend, I’ll be ready to ride my E-bike again.

When we have downtime or are sick, it affects our bodies more than we realize. We have to remember to start back slowly and listen to our bodies. I was so hard on myself the first week after the hospitalization because I couldn’t make it through the videos I was doing before. But a great PHriend and support @cdvol3gmail-com reminded me I was doing more than the day before. This mindset helped me. So I wanted to share.

[Dawn]

Hi, @jenc. I just started again last week using my stationary recumbent bike, and using hand weights to work on my arm strength. I definitely need to lose some weight, can feel it in my breathing, and the recumbent seems to help with stretching my leg muscles as well – which helps my knee pain.  I’m hoping to be able to get back to taking walks like I used to, although I know I’ll be limited by how long my tanks will last. It’s still something to work toward.

[jen-cueva]

Hi @dawnt, I’m so proud of you for starting to use your recumbent bike again. I know that using my hand weights helps, and my goal is to gain strength. I heard throughout nursing school, “use it or lose it,” so it’s challenging when we don’t have the strength, air, or energy to “use” our muscles. How heavy are your arm weights? Remember to listen to your body and start slowly.

We did a ride after the rain on Saturday on our bikes. It felt so good, but my legs feel heavy after that for several days. Do your legs feel super heavy after your ride?

That napping and eating were about all I did over the weekend.

WTG on starting back on some activity. I love your goal of walking. I told Manny that my goal was to walk to the mailboxes when we moved in. But so far, I’ve only made it to the pool. But the mailboxes are at the top of a steep hill, so it’s almost like I can hear the theme from Rocky playing in my head to encourage me to achieve that goal.

Do you listen to music while riding?

You got this, girl! Keep on moving forward.

[Colleen]

Way to go @dawnt and it helps when you think of a goal that you can look forward to, like returning to the walks you enjoy. Now that my favorite season is here I’m going to try to get back into walking too…thanks for the inspiration!

[jen-cueva]

Hi @colleensteele, yes, the cooler air seems to be when we can get outdoors and enjoy more. I am happy that @dawnt has inspired you to start walking again as the temps cool down.

[Dawn]

I use 5 lb hand weights, @jenc. I have 5 or 6 different arm exercises I do while I’m doing the recumbent. I usually have a tv on, since my exercise equipment is in the basement, or I’ll watch movies that I have. My washer & dryer are in the basement as well, so I can do a load of wash and get it in the dryer while I’m down there anyway.  Saves me a trip up & down the stairs! And, I also have a little area in the basement with a couch, the tv, etc., so my boys are right there with me as well.

You are so welcome, @colleensteele, for any bit of inspiration I might be able to give.  This year has absolutely flown by, but spring and fall are my favorite times of year so I’m looking forward to the cooler weather – high temps and humidity have never been a favorite of mine, and this past summer was brutal!  With the medical issues you’ve been dealing with, Colleen, take it slow to start. I think you’ll find significant joy in your walks. I hope, too, that you’re getting or at least getting closer to getting answers for your medical issues.

 

[jen-cueva]

Hi @dawnt, yeah, that’s what I use, too- 5-pound weights. Since my last hospitalization, I have started a new YouTube video series, and I need to slow down a tad.

It’s a 50ish-year-old woman who shares videos on several exercises. Yesterday I did an arm one and also an ab workout. Nope, I’m not yet 50 but getting there, LOL.

I’ll share one of her arm videos here; this one can be done without weights. Check her videos out and see if you enjoy any; she has so many I haven’t seen them on. Of course, I do the shorter ones.

5 Minute Arm Exercise- No Weights Needed

I like that you are killing two birds with one stone while exercising and doing laundry. Then you can take a break with the boys on that couch before heading back upstairs.

Of course, for anyone first starting with exercise, start slow and listen to your body. You may want to run it by your PH team to be sure it’s safe for you to perform whatever exercise you plan.

@colleensteele, yes, listen to Dawn and start slow. I do hope you are not struggling as much with your health and get answers soon. Did I already ask why you haven’t seen a new rheumatologist?

[jen-cueva]

Hi @dawnt, how are you feeling this week? Do you have the energy and breathing to do these exercises now?

I’ve not worked with my arm weights in a few weeks, but I hope to get to it this afternoon, even if it’s a 5-minute routine.

Are you like me and start these workouts and do them for a while until PH or other issues interfere and it takes time to get back?

[jen-cueva]

Hi @dawnt, how are you feeling this week? Do you have the energy and breathing to do these exercises now?

I’ve not worked with my arm weights in a few weeks, but I hope to get to it this afternoon, even if it’s a 5-minute routine.

Are you like me and start these workouts and do them for a while until PH or other issues interfere and it takes time to get back?

[Aunt Lizzie]

I’m not sure if anyone else has suggested this activity, but I really enjoy participating in Zoom On-line classes for whatever interests me, such as art appreciation, history, astronomy and so on. There are a lot of classes on-line. Some are free, others may have some fee to pay to access. I also found Dr Noah’s regular presentations really helpful and interesting, with the occasional laugh. And don’t even mention YouTube. As long as you don’t get caught up in Funny Cats and Dogs, but try some links with more depth. You can really challenge your brain. When about to turn off my PC and go to bed a few nights ago, I happened on a site showing a guy washing a huge carpet square – it was so rivetting – LOL – no truly I watched it to the end, berated myself and went to bed.

[jen-cueva]

Hi @auntlizzie, online Zoom classes sound like an excellent idea. There are so many if we want to look at exercise-related types or hobbies and special interests. Last week we received the schedule for the adult college campus nearby. They have a variety of classes and many online. I was looking through the catalog circling ones that interest me. When I was done, I had 10, LOL.

Manny said I had enough on my plate lately and didn’t think it was time to add online classes.

Dr. Noah has some excellent online material, including exercises and deep breathing.

On not YouTube! Manny watches that each night before bed and a variety of topics. It’s crazy how much is available there. Interesting yet many I never really had an interest in but got sucked into at times. So, I can relate, LOL.

Thanks for sharing- I hope you have a feel-good week ahead.

[jen-cueva]

Hey, y’all, it’s a new year, and many vows to move a bit more. Even with PH, we CAN do a little and move our bodies. In most cases, it’s beneficial. But always check with your PH team to see how much you can do.

Although, I do some form of exercise three times per week, minimum. Not all weeks go as planned. Last week, for instance, I only made it one day.PH and my kidney issues decided not to play nice.

But, I’m working at being OK with that as we all know PH likes to creep in and cause a few road bumps when we least expect it. So, without giving ourselves a quota, let’s vow to move more today than yesterday if our body allows it.

Who is ready to move when you can? What things are you doing this year to keep active? Anything new?