Using Shaker Plus for my Cystic Fibrosis – my 2 weeks’ progress report

After 14 days of using the Shaker Plus for 30-40 mins twice daily I broke my magic 5 liter volume barrier. My max was 4.8. Magic! I was expecting improvements in maybe a month or two. I’m lost for words.

I knew it was only a matter of time as I could sense the improvements were there. I thought maybe in a month or so, but this is outrageous… To break 5 liters for volume first time ever. I’ve only had it less than 2 weeks — 30-40 mins twice daily. Obsessive?

Regards
Edward.

You can read Edward’s story about why he came to use the Shaker Plus and his experience of using it in his original blog, ‘Using the Shaker Plus as physiotherapy for my Cystic Fibrosis’.

If you have an inspirational story that you’d like to share then please leave a comment here or share it on the POWERbreathe Forum, Facebook or Twitter as we’d love to hear from you.

Using the Shaker Plus as physiotherapy for my Cystic Fibrosis

Edward's results

We received this wonderful story from Edward Wandasiewicz, a cystic fibrosis patient who started using the Shaker Plus by POWERbreathe 10 days ago and is already experiencing some very encouraging results. Here’s his story…

“I purchased about 10 days ago a Shaker Plus for physiotherapy for my cystic fibrosis. I also purchased a POWERbreathe Plus for IMT. I thought I’d use one for mucus clearance (the Shaker Plus) and the other (Powerbreathe) for taking 5-10 breaths after my inhalers to suck the already resting particles even further down. Repeating this action I should get clear airways at level 22-23 of my airways and inhaler particles down there too. That’s the theory anyway…. I’ve been using the Shaker Plus for 30-40 mins twice daily. I actually enjoy doing physio now.

I purchased a medical grade spirometer from Carevision, the Micro 1. My cystic fibrosis clinic at Royal Brompton Hospital use Microloop. Here are my numbers – from a slow blow PEF 50% (Peak Expiratory Flow), and a fast blow 99%. The numbers today for a slow blow FEV1 (Forced Expiratory Volume) and FVC (Forced Vital Capacity) are higher than a fast blow FEV1 and FVC when I was 24-25, my peak best. When I was about 25, the fast blow numbers were FEV1 about 2.2 and FVC about 4.7. Today fast blow is about 2.06 / 4.36. I also had an instantaneous pneumothorax at 29 repaired with talc surgery at 29 and I’m 39 now. No known problems post-surgery since. Here’s a photo of my results for slow blow and fast blow.

I’ve been using the Shaker Plus at level 2 and the results are nothing short of jaw dropping. I sent pictures of my results to my cystic fibrosis team. They can’t believe it either. Think I’ve been inhaling fairy dust or got some kalydeco trial drugs from somewhere. Rest assured I have not.

I actually feel clear and strong like I was when I was 25.

How I came to use Shaker Plus and POWERbreathe

About 15 years ago, in 1995 or so, physio therapist Jennifer Pryor did a trial using the cornet / pep mask / acapella / flutter at the Royal Brompton. She also wrote a few books including Physiotherapy for Respiratory and Cardiac Problems but she has retired now. I ended up choosing the cornet as my favourite device and still do to this day. Unfortunately they don’t make the device or the rubber tubing anymore and it’s become fragile due to hot water cleaning.

I was an inpatient at the Royal Brompton Hospital, and gave autogenic drainage (AD) a go. I found it ok: about 50/50, maybe 60/40 in favour of AD. The cornet is like blowing air underwater in a swimming pool; it really reaches deep down.

On the day of discharge, I picked up a common cold and had to stay in for an extra week. If ever there was a time to continue doing physio, this was it. I had a read of Respiratory Muscle Training: Theory and Practice and hence came across the Powerbreathe website. I gave the Powerbreathe Plus beginner model and Shaker Plus a go.

The Shaker Plus is an awesome device. It’s like the Flutter but a little stronger and much more effective. I compared how much I cleared using the two devices i.e. between my favourite cornet and the Shaker Plus, and the Shaker Plus cleared twice the amount in half the time.

I have developed my own modifications when using the device, such as covering one or two of the holes on the cap to increase resistance or stop air being blown out, being blown back into my eyes.

It’s a great device to use lying on your side too, as you can change the mouthpiece angle. It’s really easy to clean too with no awkward parts like the cornet.

After my purchase of the Shaker Plus 10 days ago, I had a go at spirometry. My results for a slow blow (SEF) measuring FEV1 and FVC equivalents are now greater than a fast blow (FEV) measuring FEV1 and FVC from my early/mid 20s. I have an asthmatic component to my Cystic Fibrosis which makes a fast blow more spurious on results.It’s my favourite physio device now, by a few litres…

I’m possibly going to put the Powerbreathe Plus to one side for the time being. I’ve had one physio say it should be ok to use on a light resistance, given my collapsed lung 10 years ago, but I’m awaiting confirmation from my consultant as it was repaired with talc surgery. I’ve been using a few breaths here and there, but not continuous or too strong. But even from minimal use, I do notice a significant stronger inhalation with my puffers.

I actually feel clear and strong like I was when I was 25. Many thanks for all your hard work and research.”

Regards,
Edward

Message from POWERbreathe: We’d like to thank Edward for getting in touch with us and sharing his amazing story and experience, and we hope that his story inspires others with Cystic Fibrosis to ask their physiotherapist about using this expectoration device that helps mobilise pulmonary secretions without the use of drugs.

We’d also like to offer Edward our best wishes for continued good health and improvement.

If you too have an inspirational story that you’d like to share with others then please leave a comment here or share it on the POWERbreathe Forum, Facebook or Twitter as we’d love to hear from you. Why not also read our blog written by Evan Scully who was diagnosed with cystic fibrosis and has written about his first experience of using POWERbreathe.

Evan Scully, Scully Therapy Clinic – my first experience of POWERbreathe

At the age of 6 months, the Doctors diagnosed me with Cystic Fibrosis. CF is a hereditary disease of the lungs and pancreas, resulting in more mucus production and the inability to produce digestive enzymes. Not only do I produce more mucus, but it is also thicker. Therefore, it is harder to get the mucus up.

I was given a life expectancy of 10 years of age. My 10th birthday came, and the age was changed to 18. I’m 26 now, so I think the Doctors have given up guessing.

Having Cystic Fibrosis means doing airway clearance every single day. Christmas Day and Birthdays are days in which shouldn’t be ignored as it’s a clear reminder that your one year older, and that you are beating the odds even more.

So keeping on top of my CF remains one of the biggest parts of my life. Along with having CF, I also have Exercised Induced Asthma. One would think I should be bed ridden, but it’s just another hurdle that I have to jump, and clear.

As part of my airway clearance, I run. A lot. I run 10 times a week and anywhere between 70-100 miles a week. This comprised of two speed endurance sessions, a threshold run, a long run ( between 90mins to 2 hours), recovery runs, and of course a day off. I have to take precautions while doing the speed training, as my lungs can flair up. This means taking a steroidal inhaler beforehand.

I’m constantly looking for ways to help both my EIA and my CF. I heard about POWERbreathe roughly 5 years ago, and it was always something that interested me. So recently, I had a very bad attack of inflammation in my lungs which came out of the blue. It meant not being able to run. When I can’t run, I’m stuck with a catch 22 situation. I need to run to clear the mucus from my lungs, but if I was to run, my chest wouldn’t allow me because of the inflammation.

While sitting down, trying not to do too much, I remembered about the POWERbreathe. I thought what could be the harm in trying it out. As soon as it arrived, I had a go of it. I was surprised at how it worked the lungs from an inspiration and not expiration point of view. I’m a cynic when it comes to these types of “gadgets”, because there are a load of “gadgets” out there. From my first breath, I could actually feel my pulmonary muscles and diaphragm kicking into action.

A big part of my life is my work. I am a Sports Therapist and Acupuncturist. I run my own clinic called Scully Therapy Clinic. By treating Olympic athletes, I see quite a few who come into the clinic with either Asthma or Exercised Induced Asthma. I could safely recommend the athletes to use POWERbreathe as a tool to help their lungs become stronger. Stronger lungs equal faster times.

I have documented, and will continue to document how I am getting on with the POWERbreathe on my blog: www.ihaveCF.blogspot.com

Evan

A huge thank you to Evan for sharing his first experience of using POWERbreathe for Cystic Fibrosis and we’ll look forward to sharing with you his continued experience.

If you’d like to show your support for Evan then please leave a comment here, and if you too are using POWERbreathe to help symptoms of Cystic Fibrosis then we would love to hear from you.

 

Madeline Simon (MS ) – My latest K3 stats show an improvement in my lung condition

Madeline SimonIsn’t this sun and warmth a lovely welcome, it definitely gives you a boost in energy, makes you more motivated and wanting to achieve more. I have to confess that when it was cold and wet I did let my POWERbreathe routine slip a bit but am pleased to report in that things are back…plus a bit more; a few press ups in the morning and have started going on the exercise bike – only 10 mins today but aim to build it to 20mins a day.

My summer plans are going well and I didn’t overdo things when I had a few days away to see some friends and ex-colleagues. My school friend reunion has been put back to Sept/Oct, the date is yet to be confirmed.

Here are my latest stats on my POWERbreathe K3, I was pleased to see that my lungs hadn’t lost condition with the brief lapse I had at the beginning of the month. For June I am aiming for an improvement again and getting back on track for a steady improvement each week.

 

TRAIN

 

TEST

Date Level Load cmH2O PowerWatts VolumeLitres T-index%   S-IndexcmH2O FlowL/s Volume Litres
26th May 2012 Hard 54 4.7 1.7 98 High   84 Average 4.9 1.9
21st April 2012 Hard 54 4.9 1.7 98 High   82 Average 4.7 1.8

Madeline

If you would like to leave a message for Madeline, then please leave a comment here.

If you have a health condition that leaves you with inspiratory muscle weakness then please get in touch. We’d also really like to hear from you if you are using POWERbreathe breathing exercises for asthma or to complement your COPD treatment.

Madeline Simon (MS) – I’m quite impressed with my POWERbreathe results

Madeline SimonI’m in my 2nd week of rebuilding and things are looking up. It’s always good to know what your own body needs, so you don’t get despondent. I have even started making plans for May, one of them being a luncheon with some of my ex-colleagues and friends which I had to miss out on last year as I had over done things.

Like I said last week, I am quite impressed with my POWERbreathe results. I am making steady progress every week and feel better and stronger for it. I don’t do excessive training but what I do is working for me. Long may the progress continue.

As of this week I am reducing my journals to once a month, reporting in on my breathing training results from my K3, as well as a general check-in.

TRAIN

TEST

Date Level Load cmH2O PowerWatts VolumeLitres T-index% S-IndexcmH2O FlowL/s Volume Litres
21st Apr 2012 Hard 54 4.9 1.7 98 High 82Average 4.7 1.8
25th Mar 2012 Hard 50 4.4 1.6 100 High 75Average 4.3 1.7

Madeline

If you would like to leave a message for Madeline, then please leave a comment here.

If you have a health condition that leaves you with inspiratory muscle weakness then please get in touch. We’d also really like to hear from you if you are using POWERbreathe breathing exercises for asthma or to complement your COPD treatment.

Madeline Simon (MS) – Me and my faithful POWERbreathe

Madeline SimonHaving built myself up for Easter and our family guest over for the weekend, I do feel a bit drained now and have given myself 3 weeks rest before any more exertions.

I know it sounds a bit pathetic but it is what my body needs. At least my faithful POWERbreathe doesn’t take too much effort. I will share with you my results next week; I think you will be impressed, I am!

My MS (Multiple Sclerosis) symptoms seem to be declining too. A change in my eating habits and general routine is paying off but more needs to be done. I must learn not to overdo things. Like I said I am slowly learning.

Madeline

If you would like to leave a message for Madeline, then please leave a comment here.

If you have a health condition that leaves you with inspiratory muscle weakness then please get in touch. We’d also really like to hear from you if you are using POWERbreathe breathing exercises for asthma or to complement your COPD treatment.

 

Madeline Simon (MS) – I like the POWERbreathe K3 because you can constantly measure yourself & set your targets accordingly

Madeline SimonI have to correct my mile estimation from last week, it was actually more like ½ mile but still very impressive for me.

My overall POWERbreathe breathing results dipped slightly this month, the reason being I developed a real stinker of a head cold, which has set me back a bit. But, the beauty of the POWERbreathe is I know that I can get back on stream again fairly quickly and without absolutely exhausting myself. So onwards and upwards and I look forward to next month’s results showing me back on track. That’s why I like the POWERbreathe K3 – you can constantly measure yourself and set your targets accordingly.

 

TRAIN

TEST

Date Level Load cmH2O PowerWatts VolumeLitres T-index% S-IndexcmH2O FlowL/s Volume Litres
25th Mar 2012 Hard 50 4.4 1.6 100 High 75Average 4.3 1.7
02th Mar 2012 Hard 47 4.6 1.8 100 High 78Average 4.5 1.9

Madeline

If you would like to leave a message for Madeline, then please leave a comment here.

If you have a health condition that leaves you with inspiratory muscle weakness then please get in touch. We’d also really like to hear from you if you are using POWERbreathe breathing exercises for asthma or to complement your COPD treatment.

Madeline Simon (MS) – You would be so impressed with what POWERbreathe has done for me…

Madeline SimonYou would be so impressed with what POWERbreathe has done for me… A friend came round on Friday and we decided to go for a walk – and it wasn’t short: just under a mile with much chatting as we went. The good news is I wasn’t out of breath at all! Having started using my POWERbreathe in August 2010, I really haven’t looked back.

I do suffer from poor balance, tremors and fatigue with my MS (multiple sclerosis), but the POWERbreathe has helped eliminate another potential symptom i.e. being out of breath all the time.

Thank you POWERbreathe!

Madeline

If you would like to leave a message for Madeline, then please leave a comment here.

If you have a health condition that leaves you with inspiratory muscle weakness then please get in touch. We’d also really like to hear from you if you are using POWERbreathe breathing exercises for asthma or to complement your COPD treatment.

Madeline Simon (MS) – 19 years of living with Multiple Sclerosis

Madeline SimonIt’s been a quiet week on the exercise front this week, but that’s mainly because I had guests for two days and some paperwork that needed to be done.  It’s funny how a change of routine just throws everything up in the air. I need to get back on stream again PDQ with my Pilates and POWERbreathe.

However, it has done me a favour in a way, as I have decided not to see my friend in Italy until September/October, and that’s if I am feeling fit.  As you can tell from my previous blog posts,  because of Multiple Sclerosis I’m not good with stress or changes to my routine, but I  am slowly learning and recognising when I need to take things easier, after 19-yrs of living with MS.

Now I’m off to do my POWERbreathe training! Speak to you again next week.

Madeline

If you would like to leave a message for Madeline, then please leave a comment here.

If you have a health condition that leaves you with inspiratory muscle weakness then please get in touch. We’d also really like to hear from you if you are using POWERbreathe breathing exercises for asthma or to complement your COPD treatment.

Penny Harris – 3 weeks of using my POWERbreathe Medic

Penny Harris in Turkey 2011I have now been using my Powerbreathe Medic for 3 weeks.  The day I started using it I also reduced my inhaler dosage. This was done with the full approval of the nurse at the asthmas clinic!

I have been tracking my peak flows twice a day to give me an objective picture of what is happening.

The first couple of days my peak flow stayed the same, then on day 3 it dropped slightly, only by 15-20 points.  After two days it popped back up again, and has been trundling along since then.  The only time I have had any symptoms was after a tough track session, but I always have coughed after those!

Getting into a routine with the twice daily use of the Powerbreathe has been a case of trial and error.  In the morning I try and use it before I use my inhaler, in the evening the same.

It did take a few days to get the tension right, but I got there! I am now increasing the resistance quite quickly, especially when I realise that I have done 30 breaths and not noticed! I am intrigued to see how I go over the next few weeks, as I increase the resistance higher.

I am going to see the asthma nurse again and go through the Powerbreathe with her. We are going to discuss my asthma medication again as well as I am on such a low dose of my current inhaler it is not technically therapeutic!

Penny

If you too use POWERbreathe breathing exercises for asthma, we’d love to hear from you. Please sign up to the Blog or leave a comment here.