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PoTS and Exercise Part 2: How to get started

This is part 2 of PoTS and exercise, which will hopefully tell you about the protocol and how you can get get started! If you haven't read part 1, I really recommend you do to understand how exercise and this specific program is meant to help and to read the research that currently supports it. This protocol is tough! It is an 8 month program with 5 workouts a week including long cardio sessions so you really need to be self-motivated and determined. The more I understand HOW something would help the more I can see WHY I want to do it which keeps me on track.

What does the protocol include?

It's an 8 month protocol of exercising which includes:

  • 3 sessions of aerobic activity per week

  • 2 sessions of strength training per week

  • Stretching and recovery sessions each week

You start in recumbent position for 3-4 months and progress to upright position for month 5 if you are able to.

Aerobic activity options include: recumbent cycle, rowing ergometer or swimming laps or kicking laps with a float. From month 4 you can progress to an upright cycle, and then from month 5 you have the options to add in treadmill walking or elliptical. Then at the late stages you can add in jogging and step machines (but you do not need to ever add these in if they are not for you).

Strength training includes: horizontal and seated exercises working on full body strength. Again as the training protocol continues you can then add in more upright exercises as your body is able to tolerate them.

Stretching needs to be included as part of your recovery. As does gentle recovery workouts as you progress in your program and start training in 'MSS' zone (explained later) you can do things like slow cycle, slow swim, gentle work etc. anything that gently gets your body moving.

Gym or at home?

This is up to you and depends on several factors. I did the first two months at home and that worked out really well, and now currently doing it in the gym as I am out in Australia. The main points to consider are the following:

How well you are when you start the program?

My energy levels were very low when I started so having a bike and few pieces of equipment at home made exercising more more accessible for me, as I could grab a moment I felt more able to move

What your preference for exercise is?

Some people feel more motivated when in the gym environment, whereas others don't like exercising in front of others. It is completely about where you feel more comfortable.

What works with your finances?

I bought a bike from amazon which I justified as equivalent to 3 months' gym membership. But this may not be an option for you. You do really need access to either a bike or a rower, you cannot do the program without it. Or maybe you can convince your parents to install a heated swimming pool? I have tried since I was about 10 but my parents always said no to this!

The space you have?

Alongside having a bike or rower, you also need a yoga mat and few weights if you are doing the program at home. The exercises need to be done horizontally or seated so you need to have the space to do this.

Do you have a heart rate monitor?

This is also vital for the program especially for the aerobic activity to ensure you are training in the correct heart rate 'zone'. Most cardiovascular gym equipment does have inbuilt heart rate monitors on the handles, as do some bikes you can buy for home use. However, I prefer using the monitor as part of my watch as it is continuous and I trust its reliability. I do not always have my arms in the same position when cycling so the bike would only intermittently take my heart rate when I hold the appropriate section!

Do I have to be at a certain fitness level to start?

This program is designed for you to start at whatever level you are at. Some people may be highly symptomatic even sitting and be bed bound vs. others may be symptomatic after standing for some time and everything in between.

Personally, I think this would be very intense if you did start from being bed bound and with no exercise tolerance prior to starting but hopefully it is not impossible. Although there is a month by month schedule, it would be really important that you take charge of the schedule and begin it at your own pace and build up slowly until you can complete the full week. You have to work with your physiology and go at your own pace. I had intermittently cycled for the last year but I still took a while to keep up with the ever increasing time spent on the bike. I would often repeat a week until I felt I could keep up with that level/pace.

What is the schedule?

I have used the schedule suggested from CHOP modified Dallas program for PoTS. I found it was the simplest and most comprehensive guide I could find. It has lots of information at the beginning on how the program works alongside the schedule for the protocol.

Each week states exactly what you need to do as part of your cardiovascular training alongside the two days for strength training. It does have labelled days and suggests you complete the workouts Monday to Friday, however as long as you complete all 5 workouts in the 7 days it doesn't matter too much which day you do each thing on. It also notes you can do strength training and cardio training on the same day if you can tolerate it. I found that was too much for me, and doing 5 days out of 7 exercising works well as you still get 2 complete rest days. I also find that having a day off in between cycling works well so I will always do cycle day, strength day, cycle etc. I often move one rest day mid-week and just have one at the weekend too as I find it helps with pacing.

They do include suggested strength exercises too. I have adapted these a lot for use at home and now for the gym, and I have added more as I felt the exercises they gave weren't comprehensive. I normally split it so each week I spend one day on my upper body and the second day on my lower body and I find this works well. I think I will do a separate post/project on the strength exercises you could include as this blog is already too long!

What to do if you miss a session or have a setback/are unwell?

Your aim is to try and only have a maximum of 2 days off in a row. Anymore and you have to redo that whole week. This is because it is the regularity and continuity of training which brings a lot of the benefits.

If you are unwell, have a setback, have a procedure or a bad pain week...whatever may be the reason you miss sessions here are the guidelines from CHOP:

  • If you miss more than 2 cardio workouts then you need to repeat the full week

  • If you miss a week, back up and repeat the previous week before progressing

  • If you miss more than 2 weeks, you need to repeat the full month

I started this last September/October and I am on only on month 3 (which is actually month 5 of doing this) due to various set backs from catheter changes etc. But the trick is not to lose momentum, having to redo a week isn't a negative thing, it still all counts as training!

How do you know how hard to push yourself during the cardio?

For the cardio/aerobic activity it has strict heart rate training zone or rate of perceived exertion levels. This is really important to try and follow as this is how you build up your exercise tolerance in a slow and controlled manner without causing flares or having to stop the program due to overdoing it.

The heart rate training zone gives you a set goal of where your heart should be during that time period of exercising. The perceived rate of exertion is a scale from 0-10 in which you rate yourself how hard you are working, with 0 being no effort and 10 being the most effort you could possible give. NOTE: if you are on any medication to lower your heart rate it is recommended you use the RPE scale as your medication could prevent you reaching the target heart rate.

Do you need permission from your Doctor to start?

This completely depends on your situation and condition of your health. If you have never exercised like this before you need to seek medical advice before starting. Your usual GP/family doctor most likely won't have heard of the PoTS protocol before so they may not be able to comment on this specifically, but they can still check your blood pressure, heart rate and give you advice on whether this kind of regime will be safe for you.

Ideally you are under a team to manage your PoTS in which you bring it up with them and they can give you more specific advice to tailor it to you. The studies (such as this) I mentioned in part 1 are all with it being a physician lead training program, so you do it under the guidance of a medical team whether that is a physiotherapist, exercise physiologist or doctor. I know in the NHS, support like this is not currently provided as a standard treatment for PoTS but it may be you could discuss this with your cardiologist.

I discussed this with my cardiology team and started after my second lot of tests so that hopefully next year when I see him again we can compare the results!

How to get started?

Hopefully I haven't put you sounds a lot more complicated than it actually is and once you get started its easy. You just follow the plan! Click here to open up the plan which gives you the information I've mentioned here plus the schedule. Like I mentioned before, I will do a separate project with the adapted seated and lying down exercises I do for both in the gym and at home so stay tuned for that!

Lots of love, Zoe xx

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