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 group.

@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

REPLY
@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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Terri, I'm interested in name, etc. of your massager. It would be great to be able to reach those areas of my back that were previously unreachable. Thanks. Blessings.
Faye

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@sueinmn

Interesting, I just had this discussion this morning with my pain PT! I use how much I am able to do on any given day to measure my progress – sometimes I am limited by the lungs, other times by pain. When lungs are the limit, I try my rescue inhaler, and maybe a second saline neb, before I give in to a quiet day. With pain, I try extra stretching, maybe some essential oils, and just go slower, but try not to just quit.

Today will be a limited day, because the spinal adjustments during therapy "kick my butt" – so I'll concentrate on quieter pursuits, icing & stretching, and hopefully a decent walk later. Of course, my proposed to-do list for today originally included extensive weeding, and some digging of wayward plants in the garden – that will have to wait a day. Instead I will do some proposal-writing that I have been putting off, and maybe a little cooking or baking – not my usual summer activities at all.

When I first was diagnosed with MAC, and on antibiotics, I could manage 2 hours a day of activity, in 20 minute intervals interspersed with rest. Now I can go for several hours, with up to 2 hours at a stretch of really active/strenuous things like gardening, biking or chasing with my grandkids. A short rest rejuvenates me on good days. But I still "hit the wall" right around 4 pm – have tried sleeping later, resting, a snack, extra water, caffeine…but I'm pretty much done with anything requiring strength or brainpower at that point. My kids say "well…you're not so young any more"… but that can't be – any suggestions?

Sue

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Poodledoc, Sue, and others: thanks for giving us your personal examples that life can get better. Your Weight/resistance training, your going slowly from 20 minutes of doing to now two hours of biking, etc has encouraged me so much. One of you reported oxygenation increase to 97%. It never occurred to me that I could change that. After a neck injury in June, I had PT , all upper body weights and bands. I could only do 10 minutes walking. But much as I’ve hated it, I’ve continued all, 5-6 days a week (no new Mac) and now I can do 17 minutes walking and my oxygenation has gone from 90 to 94. You all inspire me. Thanks so much!

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@sueinmn

@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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@migizii Sue, you really need to be “up north” to get some relief! Only in the upper 70’s here today!

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