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Pulmonary Rehabilitation Dropout


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#21 judyt

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Posted 16 December 2011 - 03:13 AM

Hello Miocean,

That is very interesting, frustrating, but interesting. I have often thought it would be good if I was able to qualify for a hospital programme because I thought it would be more precise than a public one - it would seem maybe not.

I have belonged to an International commercial Franchise for the past 3 years and have been very happy with it. Three times round the circuit takes only 40 odd minutes on average and that is more than enough for me. I know that the branch I visit here in my small town is a stellar one and way above any other I have visited in the same group. Here they have a programme where each participant has their own computerised monitoring, via an electronic tag, which records every workout and you can see a graph of where you are all the time. It does not include Oxygen readings but does record heart rates. I really like being able to see how well I am doing all the time. I am always very tired afterwards but quite often I can see the improvement and feel the fatigue is worth it. Sometimes not!

I have actually not actually been able to go since September but now am feeling better after a change in medication so I think I will get back into it after the holidays.
When I have had my SNS implant early next year I have my fingers crossed that I will be able to do some walking too. You say you walk slowly - I bet you can outstrip me though :rolleyes: .

Best wishes for a steady improvement for you.

JudyT

#22 miocean

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Posted 16 December 2011 - 08:20 AM

Hi Judyt,
I have a fitness center a long block away that is part of the hospital I just went to look at but does not do Pulmonary Rehab. They have Physical Therapy upstairs and a small therapy pool but I went to a different PT program. I belonged to that gym for years and did weights, aerobics and yoga. I hired a personal trainer who was great. She left that gym when another new one opened in town and many people went with her so I followed. A month later I got sick. I paid my membership for 6 years, all through the time I was on dialysis and hardly ever went. When I got the kidney I was told no gyms because they are too dirty (my nephew got ringworm from his) so I quit. I used to be a gym rat but find them rather depressing now.

Your gym sounds great. I used to have a heart rate monitor but gave it to my niece thinking I would never use it again. I know how to take my pulse and can tell when I am getting short of breath.

However, two of my neighbors go to the gym down the street and I really like both of them. It is a little older crowd, not body builders and model wanna bees but not old AND sick. I'll be keeping it in the back of my mind. I could also go back to my personal trainer, she has her own private studio now, mostly Pilates and massage and she teaches yoga at a nearby location (and I gave my yoga mat and exercise ball away).

One step at a time for now and for now it's walking for me. I'm going out to lunch today with one of the neighbors mentioned above to the next town north, also a lovely little shopping district and we'll probably walk around after a delicious, locally grown, fresh meal.

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#23 Joelf

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Posted 16 December 2011 - 08:27 AM

Hi Miocean,

I'm really pleased to hear that your leg pain has improved and it does sound as if it will be more pleasant and advantageous for you to walk outside, providing the weather is reasonably clement.

I tend to do my own fitness plan as well, although I love going to the gym. (We're not talking 20 year olds leaping around in lycra and muscle bound weight lifters here though!! ;) :lol: Most of the other members are my age or thereabouts and really lovely people. Your local gym that your neighbours frequent sounds very similar!) When I was first diagnosed and my lungs were at their worst, I toned right down the amount of strenuous exercise I did; as my lungs have improved I've increased the amount of running and cardio vascular work I do, although realistically I know I shan't ever be as fit as I was before I had Scleroderma. I also tend to have good days and not-so-good days with my lungs and joints, as I'm sure most of our members do, so I make the most of it on the good days.

I really hope that you improve steadily and that your legs stay painfree. My mouth's watering at the thought of your lovely meal! :emoticons-line-dance:

Best wishes,

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#24 Amanda Thorpe

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Posted 16 December 2011 - 04:02 PM

Hello Miocean

I am glad that your leg pain has stayed away because losing any pain is a real bonus! :yes: I hope you and your husband have many, lovely walks to come.

Take care.
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#25 judyt

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Posted 16 December 2011 - 08:20 PM

Hi Miocean,

Yes that's it - no bodybuilders or lycra or wannabe models - that is what the gym I go to is like. People like me in their shorts and t shirts. Sometimes it takes a bit of thinking of what it is about some place we like more than another. As well it's the 'instructors' too. We get excellent gentle encouragement where I go and there is always somebody keeping an eye out for you. Some places the staff are reading magazines and talking to their boyfriends on the phone - not a good look.

Going with a friend is great too, we live a bit out of town so 3 of us used to go together and do our supermarketing etc. afterwards. I will have to organise myself in January to start going alone.

Hope your plans work out well for you.

JudyT

#26 Shelley Ensz

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Posted 27 December 2011 - 06:34 AM

Hi Miocean,

As you know, my husband has had pulmonary rehab several times, both before and after his lung transplant. The most important part of it, as I understand, is to get people who are very sick or recovering to understand how they can safely exercise, and to heartily encourage them to do so. It's not always easy to talk couch potatoes into any sort of activity at all.

If you know what the goals are for your pulmonary rehab, and you have safe parameters to follow from your doctor, it's probably reasonable for you to follow your own program. Within a few weeks of finishing pulmonary rehab, my husband swapped out walking on the treadmill to walking outdoors as much as possible and in malls when that wasn't possible. Because he's doing what he loves, he looks forward to it, doesn't develop any excuses to try to quit, and it is just part and parcel of life -- not a chore and not an expense. He has an oximeter which he always keeps on hand but seldom needs to consult anymore.

The goal is to be active, and out and about, and breathing deeply, and for some people that's very hard to get the hang of, or worse yet, they quit doing anything at all the minute they graduate (or flunk out) of pulmonary rehab. You have walking buddies and are eager to get out and about -- so just keep on doing what you're doing! You may not need anything fancier, or more expensive, than a nice pair of walking shoes and the good sense to slow down when you need to.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#27 miocean

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Posted 28 December 2011 - 10:09 PM

I am thrilled to say I was able to do something I haven't been able to do for years..my husband and I walked up to the jetty and back, a 3 mile walk! I used to run it a couple of times a week, and then walked it once after scleroderma hit the fan but haven't since. I took 3 hours and we sat on benches a couple of times but it was a great feeling to be able to do it!

I know how to do pursed breathing from running and also know to keep at my pace so I don't get short of breath. Little by little..

miocean
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#28 Joelf

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Posted 29 December 2011 - 12:37 AM

That's fantastic, Miocean; I'm so pleased for you!! :emoticons-line-dance: :emoticons-line-dance:

I think it makes all the difference if you've got a lovely place to walk as well.

I do hope that 2012 will be a really good year for you and you'll continue to improve and be able to do lots more enjoyable walks! :emoticons-yes:

Best wishes,

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#29 Amanda Thorpe

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Posted 29 December 2011 - 02:34 PM

Miocean, you go girl...and hubby!
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#30 miocean

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Posted 29 December 2011 - 09:25 PM

I am happy, too :emoticons-line-dance:

I am already looking forward to being able to go back to museums, something I have really missed and living so close to one of the art capitals of the world would like to take advantage of again.

I am a "flatlander" though, a term I learned when I used to go camping in the mountains. It is pretty flat around here, the biggest hill is a bridge. :VeryHappy:

:happy-dance:

miocean
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#31 Shelley Ensz

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Posted 06 January 2012 - 02:37 PM

Hi Miocean,

So I'm curious, with all this walkabout, did some sort of activity make it into your New Year's Resolution?
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#32 miocean

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Posted 07 January 2012 - 06:43 PM

No Shelley, I don't make New Year's Resolutions, I usually break them by the 3rd! :)

However, my walking is not going as great as I'd hoped. How I ever did that 3 mile walk is beyond me, I must have been very determined. :P The past two walks of a much shorter length have had me sitting down to rest and really dragging the last couple of blocks and happy to get home and sit. My legs are achy, but tired achy, not that awful pain. Just like me, jump into something head first and then realize its over my depth.

Yesterday we went to my scleroderma center (see post on update of my tests). When I first went there 7 years ago I was on oxygen and the hallway from the entrance to the elevators seemed like it was miles and took forever. I remember commenting to my husband "why do they put the elevators so far away in a building where sick people come"? Now it is a relatively easy walk, although the design really should have taken the distance into account.

On the way there my foot went into a cramp and I was complaining about the pain, knowing I would have to do a short walk test and wondering how I was going to do it in pain. As I was walking down the hallway I passed a woman in a wheelchair with only one leg and it really put things in perspective. :blush:

But I'm NOT giving up. I'll just be taking baby steps. And I really like my couch and my bed!

miocean
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#33 Shelley Ensz

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Posted 18 January 2012 - 07:18 PM

Hi Janet,

How did your checkup turn out? Did your walk test go okay?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#34 KayTee

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Posted 18 January 2012 - 08:06 PM

Great news and walks miocean. Less leg pain and more outside sounds like a wonderful recipe. Congrats.
Kay Tee

#35 miocean

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Posted 18 January 2012 - 09:36 PM

Shelley,
I posted all my test results in Yearly Test Updates.

Everything is going as well as can be expected, so that is great! Thanks for checking up on me.

miocean
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