Measuring Progress

Posted by thumperguy @thumperguy, Aug 19, 2020

I use time between acute flare-ups requiring antibiotics to resolve as a handy “gross” measure. However I’m aware that many people active on this forum are copping with greater pathology than my “mild” case and likely have more sophisticated ways to assess status

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@sueinmn

@migizii That's a great story - I have had 3 wonderful docs at TCO, and recommend people consult with them all the time. Last night my best friend told me her hand surgeon advised her to have both wrists fused due to arthritis - less than two years after taking x-rays and telling her they were "fine." I immediately suggested consulting TCO for someone who specializes in carpectomy without fusion, because I had gotten the same advice, changed surgeons & had good results without fusing.
Your story reinforces what we tell people here - be your own best advocate, and don't be afraid to get a second opinion. I hope your healing continues to go well - several year out from surgery my sister in law is doing well on her fused foot and ankle.
Good luck with your therapy - that reminds me I need to go do mine!
Sue

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Thanks so much Sue!

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@sueinmn

Thanks for the encouragement everyone. I don't feel inspiring - just stubborn. The women in my family occupy their bodies for an average of about 90 years, so I have to keep after mine so I can be an active occupant.
Sue

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Hi Sue. I don't know how you do it; dealing with mac AND pain. When people ask me how I deal with my lung issues with grace; I tell them that I feel grateful that I am not dealing with chronic pain as well. Do you have some good massaging gadgets to help you?

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Don, I measure my progress in various ways. At one time, I could not walk 10 feet without having to sit down and catch my breath. Now, I walk indefinitely. I used to end up in the hospital with exacerbations at least once a yr. I have not been in a hospital or ER since 2016. I have not had a cold or flu in yrs except for the flu shot last yr made me sick as a dog. More and more energy is coming back to me now. My normal oxygen level used to be 90, now, it is 97. So, to answer your question on measuring progress, mine are measured in improvements.

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@windwalker

Don, I measure my progress in various ways. At one time, I could not walk 10 feet without having to sit down and catch my breath. Now, I walk indefinitely. I used to end up in the hospital with exacerbations at least once a yr. I have not been in a hospital or ER since 2016. I have not had a cold or flu in yrs except for the flu shot last yr made me sick as a dog. More and more energy is coming back to me now. My normal oxygen level used to be 90, now, it is 97. So, to answer your question on measuring progress, mine are measured in improvements.

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Very impressive Teri.

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@windwalker

Hi Sue. I don't know how you do it; dealing with mac AND pain. When people ask me how I deal with my lung issues with grace; I tell them that I feel grateful that I am not dealing with chronic pain as well. Do you have some good massaging gadgets to help you?

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@windwalker Thanks for the encouragement - it's hot, humid, allergy time here, so some days are a little like wading in molasses, but I'm just stubborn I guess.
My new FAVORITE massaging gadget is called the "Muscle Hook" - I had to watch it carefully when my kids came for a patio dinner last night. Both daughters and my son-in-law were "fighting" over it - I was afraid it would disappear when they left! It is different from other "back cane" gadgets because it is very stiff, quite heavy and has a few more "knobs" for exerting pressure - I can even use it on the stiffest spot on my mid-back without help. To be effective, it needs to be used in conjunction with stretching exercises - the accupressure releases the stiff spot, the stretch works the surrounding muscle that has tightened up.

I also do some simple but crazy-looking exercises to work specific muscles. This guy shows me not only the stiff muscle, but it's insertion points at each end and what other muscles or tendons are connected. Hurray for iPads and the excellent apps now available. This has helped me understand how to get the best results, and the progress keeps me going.

Wow on your improved O2 sats - isn't it a wonderful feeling to be able to actually do what you want/need?
Sue

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@sueinmn

@windwalker Thanks for the encouragement - it's hot, humid, allergy time here, so some days are a little like wading in molasses, but I'm just stubborn I guess.
My new FAVORITE massaging gadget is called the "Muscle Hook" - I had to watch it carefully when my kids came for a patio dinner last night. Both daughters and my son-in-law were "fighting" over it - I was afraid it would disappear when they left! It is different from other "back cane" gadgets because it is very stiff, quite heavy and has a few more "knobs" for exerting pressure - I can even use it on the stiffest spot on my mid-back without help. To be effective, it needs to be used in conjunction with stretching exercises - the accupressure releases the stiff spot, the stretch works the surrounding muscle that has tightened up.

I also do some simple but crazy-looking exercises to work specific muscles. This guy shows me not only the stiff muscle, but it's insertion points at each end and what other muscles or tendons are connected. Hurray for iPads and the excellent apps now available. This has helped me understand how to get the best results, and the progress keeps me going.

Wow on your improved O2 sats - isn't it a wonderful feeling to be able to actually do what you want/need?
Sue

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Hi Sue. I gotta ask, what is a back hook? Sometimes I want to buy a massaging chair like they have at the nail salons so I can have that wonderful experience whenever I feel the need to be kneaded. Ooh, I made a funny. Going through all the many posts. Awesome information.
Faye

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@fdixon63

Hi Sue. I gotta ask, what is a back hook? Sometimes I want to buy a massaging chair like they have at the nail salons so I can have that wonderful experience whenever I feel the need to be kneaded. Ooh, I made a funny. Going through all the many posts. Awesome information.
Faye

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@fdixon63 Oops! My mistake - I corrected it on my original post - the one I love is the Muscle Hook. Here is one example, on YouTube: https://www.youtube.com/watch?v=fP4cBZDVYDk. I'm sure there are others

I use it as an acupressure device, not a moving massager like the film shows - to target the sore spots directly. It is great pressed against a sore spot as you gently stretch it - works wonderfully on my neck especially. I have noticed my husband using it often too. The other night I used it to gently apply pressure to some sore spots on the bottoms of my feet (brought on by working on the ceramic tile basement floor for hours - barefoot!) and slept without pain.

The reasons I like this over the others I have tried are the stiffness of the cane - easy to apply pressure without using a lot of hand/arm strength, the multiple knobs for different spots, and the extra "bump" & knobs on the center for (carefully) applying pressure directly on or next to the knots that form along my spine.
I brought it to my PT wizard & he liked it too - felt it was definitely an improvement over the original devices they have been using & recommending.
Sue

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Thanks for getting back Sue. This site is a treasure trove of information. Faye

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@sueinmn

@windwalker Thanks for the encouragement - it's hot, humid, allergy time here, so some days are a little like wading in molasses, but I'm just stubborn I guess.
My new FAVORITE massaging gadget is called the "Muscle Hook" - I had to watch it carefully when my kids came for a patio dinner last night. Both daughters and my son-in-law were "fighting" over it - I was afraid it would disappear when they left! It is different from other "back cane" gadgets because it is very stiff, quite heavy and has a few more "knobs" for exerting pressure - I can even use it on the stiffest spot on my mid-back without help. To be effective, it needs to be used in conjunction with stretching exercises - the accupressure releases the stiff spot, the stretch works the surrounding muscle that has tightened up.

I also do some simple but crazy-looking exercises to work specific muscles. This guy shows me not only the stiff muscle, but it's insertion points at each end and what other muscles or tendons are connected. Hurray for iPads and the excellent apps now available. This has helped me understand how to get the best results, and the progress keeps me going.

Wow on your improved O2 sats - isn't it a wonderful feeling to be able to actually do what you want/need?
Sue

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Hi Sue. Your back hook looks like an interesting gadget. I have a massager that I bought many yrs ago. It has an adjustable 'elbow' to reach around to your back. It also has a heated option and interchangeable knobs for varying rubs. The vibration on it is phenominal and was great for loosening up phlegm in my lungs. I use it for sore muscles in my legs and tension headaches. It has been a real Godsend. I have been house/dog sitting in Florida the last two weeks on Amelia Island. The humidity here is about to kill me. I get to go home tomorrow, yay!!! I have been caring for three dogs and a cat, and I am quite worn out. Two of the dogs are large and very strong and have about pulled my arms off when walking them. Sheesh! Will you be heading up north to cooler weather any time soon?

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@windwalker

Hi Sue. Your back hook looks like an interesting gadget. I have a massager that I bought many yrs ago. It has an adjustable 'elbow' to reach around to your back. It also has a heated option and interchangeable knobs for varying rubs. The vibration on it is phenominal and was great for loosening up phlegm in my lungs. I use it for sore muscles in my legs and tension headaches. It has been a real Godsend. I have been house/dog sitting in Florida the last two weeks on Amelia Island. The humidity here is about to kill me. I get to go home tomorrow, yay!!! I have been caring for three dogs and a cat, and I am quite worn out. Two of the dogs are large and very strong and have about pulled my arms off when walking them. Sheesh! Will you be heading up north to cooler weather any time soon?

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@windwalker Hi Terri - We are "up North"! - near Minneapolis - but have been having temps around 90F with high humidity. But here we know it is a very temporary situation - September & cooler weather are just around the corner. We left South Texas at the end of April & don't know when we'll be going back - our county there is a "hotspot" with full hospitals & many deaths - not a good situation for a ll the Winter Texans with many medical needs. Until the numbers drop WAY down, there would be no communal activities to enjoy so we'll be here in Minnesota at least until January - have been talking to all of our friends who seem to be seeing it the same way...
It will be a challenge to stay active once colder weather sets in - the gym & mall-walking are definitely off the table.

I was just at my daughter's house & her husband already got her a MuscleHook - she was using it during her stressful staff meeting - in spite of high virus numbers and a high risk population, her school district is insistent upon trying in-person instruction beginning Sept 15.
I know I am better becuase I can play chase & tag with a 4 year-old!
Sue

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