How do you complete daily activities with chronic low back pain? University of Wisconsin Milwaukee

Hello to the participants on the chronic pain forum. My name is Natalie Mast and I'm a research assistant working under Dr. Arun Garg at the University of Wisconsin Milwaukee. We are beginning to research the degree to which people with chronic low back pain are able to independently complete activities of daily living with tools and environmental modifications. We're interested in:


How effective the tools and environmental modifications you use each day are

If there is a need for new tools for certain tasks

Whether available tools aren't accessible due to cost

Which activities of daily living require the help of another person



Because there is very little research showing the efficacy of available tools and adaptations used by people with chronic low back pain, hearing what you have to say is one of the first places we can start finding relevant information. We would like to hear first-hand accounts of your experience with maintaining independence.


For this particular research, we are interested in activities of daily living, which may include dressing, bathing, toileting, eating, mobility, cooking, house care, and other activities that maintain your independence. We are not recording information relating to sexual activity. For the purposes of this study, we are only concentrating on physical disability and not cognitive or emotional disability, so we ask that answers are limited to the physical realm of maintaining independence. Also, we are restricted to interacting only with adults, so if you are a minor (under the age of 18), we ask that you do not participate in this online discussion.



This research has minimal risks to you. We will maintain confidentiality by separating your responses from your user name in our database, we will not use direct quotes that can be searchable online, and we will not use any personally-identifying language in the database of answers. There will be no direct benefits to you other than further research. Your participation is voluntary and there will be no penalty if you do not participate or decide to stop participating. Your decision to participate or not will not change any present or future relationship with the University of Wisconsin Milwaukee. If you decide after posting a response that you'd like to withdraw your response, you can contact me and I will remove your answers from the database. It is our intent to take the information gathered from the responses to this thread, assess and organize them, and present them in academic papers and presentations. By responding to this thread, you are consenting that you have read the above information, are 18 or older, and that you voluntarily agree to participate in this research study.


Thanks for reading this and participating! We look forward to learning more about these issues.


Natalie

Hi Trina,

I thought that might be the case, but I wasn't sure how to go about it. Can you tell me where to find out about that process?

Thank you kindly,

Natalie

Hi Natalie,

Not sure if you will be able to do your stuff on the forum, but wanted to let you know I am interested in helping out/sharing information with you. I've had chronic low back pain for over 16 years now (I am 36). I am located in the Milwaukee area, and actually was in the OT program at UWM several years ago, interested in things like adaptive equipment and ergonomics. Wasn't able to finish due to health reasons.

Anyway, you can find my email address in my information if you just click on my name. Please contact me and let me know if I can help.

Thanks.

post if study is approved by admin. i certainly will take a look.

I am going to bump this one up, however, we are still waiting on the administrator to give his approval.

thanks for that.

Well Natalie it look like you got your approval so I will start this game. I have a Pars defect at S-1,L2-5 so that is about as low as it gets. I have been a CPer for almost 16 years and have a daughter that age as well. With 5 kids at home when all this started I had to learn many ways to to things differently and living on SSDI sure didnt allow for money to buy any kind of adaptive devices. Medicare did eventually pay for the hand rails in y tub but it was a long battle. The biggest obstacle was laundry and bending over and up and down loading the dryer from washer and unloading the dryer,the invention of the front loader didnt help much since they are outrageously expensive for someone living on SSDI and they are not high enough without some kind of riser or platform to bring them up to level so bending isnt needed.

For washing dishes and cooking that takes a long time,chores where standing or bending are necessary I got a cheap computer chair that has a level for raising and lowering,less then $25 and maneuvered my way around the house to the stove,the washer and dryer,the dishwasher,another thing that is not spinal friendly so many of these have to do with the kitchen and women, I even could use that chair to wash the tub and toilet so it is worth hundreds to me!!

That chair allowed me to not have to ask for help in the kitchen one of my pet peeves is having someone underfoot when I am cooking. My recliner is my second most prized possession and I have not slept in a actual bed for many many years. Cant afford the ergo or spinal friendly ones so the recliner is second best.

So you see most of the things that allow for spinal injury folks to function on a daily basis are above our means and too expensive and not covered by Medicaid or medicare to the extent we can have them at our disposal. We learn really early to compensate since it means the difference between excruciating debilitating pain putting us down for days or being able to care for ourselves and families.

Hope this helps and it would sure be nice if the results get looked at by the insurance carriers and Medicaid and Medicare.

Thanks very much for these thoughtful and thorough responses, this is exactly the kind of information we are looking for. If you think of additional daily activities that pose challenges, I will be recording for about another month.

(1) How effective the tools and environmental modifications you use each day are
(2) If there is a need for new tools for certain tasks
(3) Whether available tools aren't accessible due to cost
(4) Which activities of daily living require the help of another person

Let me begin by noting that I happen to be a researcher as well, so I thought I should be among those to help you out.


To help address my problems sitting, I have experimented with numerous chairs -- recliners, zero gravity chairs, and a customized kneeling chair. They all have their drawbacks. Recliners and zero gravity chairs tend to make me sleepy and it is far more cumbersome to try to read, take notes, etc.. The kneeling chair I had helped with the above, but it was very confining. I couldn't just relax at my desk and so found myself spending less time there. As a result, I'm now using a chair for an obese person -- extra wide and extra padded (though I weight only 160 lbs). It is more comfortable and I have a wider range of sitting positions (including cross-legged).

I use a wireless keyboard and trackball as well, for they give me greater flexibility with my position. My keyboard is on an adjustable tray, lower than the desk proper, for that helps with my posture. My office at work (though I'm only there fore a few hours per week -- and generally work from home) have similar adaptive devices.

I also use two monitors and have much of what I need to read sent to me electronically. That way, I can have the text on one monitor and write notes on the other. Bending forward while reading is too difficult to do for more than a few minutes. When I need to read a print source, I will usually have it on a book stand rather than flat on my desk.

For our kitchen table, we bought a "bistro height" table, as it reduces my need to lean forward during meals.

I also chose my current vehicle because of its seat. I don't like to spend much on cars (formerly had my Mazda for 10 years), but found the seat in the Acura TL so comfortable (and with a 45 minute drive to work, that was important), I spent more than I otherwise would have... but thankfully have a good income. The padding on the back seems to offer me some mid-back lift, reducing the felt load.

The main activities I need help with involve bending forward. I'll ask my wife for help with some of these (such as chopping food while cooking, organizing lower shelves in the pantry). She likewise will take on such chores as gardening and emptying the dishwasher (though she can pile dishes etc. on the counter and I can then put them into the cabinets).

Unfortunately, I have trouble with a cane, though wish I could use one more regularly. I have hip problems, making walking difficult some days, but with a cane, I end up leaning forward. I've bought walking sticks as an alternative, but am not comfortable using them outside of the house.

Hopefully, you'll be able to extract my answers from the above narrative. If you need to restructure your study so that your questions are answered more directly, then it might be helpful for you to start a new thread.

slipped disk,lower lumbar. use a cane, as arthritis in neck and shoulders. standing too long no good, same with sitting, sweeping and mopping difficult. vaccuming etc. bending forwards doing dishes as well. walking hurts. but push through the pain. am on panadolosteo and sometimes some codeine. cheers, jamie.

How effective the tools and environmental modifications you use each day are
Big metal back brace - can't wear because the belly strap pushes on my slipping ribs.
Wrap-around back brace - only helps so much, a nuisance to put on and off, rides up especially when sitting
Cane - can't use because left arm and hand too weak
Reaching tool - not strong enough or shaped very well for grabbing much of anything beyond socks on the floor - both styles - vertical and horizontal. One that rotates might help
Shoe horn - works very well, but I have to leave shoes tied loosely, can't reach to tie without pain
TENS unit - can't reach behind my back to put on, take off
Desk chair doesn't have lumbar support
Heating pad - large size - needs to be wider, longer timer


If there is a need for new tools for certain tasks
There is a belt TENS, but it cannot be modified to place pads where needed. A back shaped higher and movable pads would be useful.
I wish there was a lightweight walking stick for walking outdoors, maybe something like a tall ski pole with a strap not at the top, maybe in pairs - with a dull tip, not a really long, sharp point.
A long, flexible handled mirror or something that would grab a mirror handle
Warm socks with no cotton that will fit under shoes, no wool either
A slightly wider soft neck brace
Voice-controlled cell phone that doesn't need to be touched

Whether available tools aren't accessible due to cost
I'd like to get a new back brace since I lost a lot of weight, but I've already got one so I don't think it would be covered.
A tall chair with a back and rubber wheels, not plastic that chip tile floors - for working at the kitchen sink or high counters. It needs fabric and padding because of my cold sensitivity.


Which activities of daily living require the help of another person
I could use help cooking, but that's simply not available under insurance and too expensive without it. So I don't eat as well as I'd like.
Along with cooking - meal prep is difficult - things like cutting a squash in half, anything that requires standing at a counter more than a minute or two.
All the outdoor work I used to do - mowing, raking leaves, gardening, painting
Getting home from the doc's office after procedures

Hello
I am goung to respond but doubt it will assist. I have lived with a different type of chronic pain for 15 yrs now; recently new pain disorders as well. I have learned frim persinal work on my ADLs and professional wirk as an Independent Living Specialist helping othets, no two people need the same assistance. As an MSW who has done much required research, I know you start somewhere and hope you end up somewhere :)
I would tighten your question/ theory up. It is broad. I am going to create online business in this area but with the knowledge that all my Peers are goubg to need different ideas.
Blessings