|Posted by mandlfoxworth on November 18, 2018 at 8:15 PM||comments (0)|
Research suggests that exercise slows the progression of PN. But only if it is REGULAR exercise. We are far more likely to work out regularly if we enjoy it. Exercise can be hard to do. Where might joy be found? A story about a mis-interpreted cancer study suggests one location.
My wife and I like the video lectures sold by “The Great Courses”. In the series titled “Stress and your Body”, by Stanford Neuroscientist Robert Sapolsky, tells a story about a research attempt to link stress to cancer. In his lecture, Sapolsky described a famous breast cancer study, wherein patients were required to participate in an intensive support group during a study on re-occurrence of breast cancer. Stress level measures went down. The patients did better. The researchers suggested that reduced stress would increase survival rates. This conclusion (“lower stress and cancer won’t come back” ) was broadcast far and wide. Lots of press attention.
However, the results could not be consistently replicated. Why?
Sapolsky explains that one of the big problems with cancer research studies is getting human patients (unlike lab rats) to actually do the treatment being tested.
Does it make sense that a patient in a clinical trial would skip the treatment that could save his life?
Well, yes, it does. Cancer treatments can hurt or have horrible side effects. They take time. People don’t always keep their appointments. They skip their pills or their shots. And they lie about it.
When this behavior occurs, research results get ruined.
Faced with results that could not be confirmed, the data was more closely examined. It turned out that the effect of group participation was actually to improve patient compliance with the terms of their study. In a group, patients support and encourage one another: “Did you take your meds today? Have you eaten? Do you feel awful? Yeah, me too. Let’s go get something to eat right now…” That is, being in a group can directly influence our participation in a treatment plan.
In the case of the breast cancer study, which was specifically designed to measure the effects of an intensive support group setting, the unexpectedly great increase in treatment compliance was so large, they could not tell if the benefit (which was real) was from lower stress or better compliance. Years later, we still don’t know if social support reduces stress enough to improve cancer survival, but we do know that social support can increase willingness to stick with a difficult treatment.
What does this tell me about exercise for PN patients? Do something you enjoy. And social interaction can be a significant part of that enjoyment.
From 2004 to 2011 I used my Wii game system, mostly my Wii Fit with balance board, every morning before work. Loved it. Like runners love to get out in the morning and run. But by 2012 my PN made it impossible to keep using my Fit. I could no longer balance on the board.
My wife and I have done water aerobics off and on for more than 40 years. We now do them regularly. Physically, this is great exercise for me – supported by the water, I can move my legs and feet in ways my impaired balance would not other wise allow. I enjoy it. But what keeps me coming is the opportunity to be among people I enjoy. I talk. And talk. I try to be respectful of our long-suffering teacher, but not to the exclusion of socializing. For me, this is a winning combination.
Until about a year ago, I enjoyed the gym. I liked the way it made me feel, but in terms of enjoyment it did not hold a candle to my socializing-enhanced water aerobics class. It was solitary, and I found it too easy to skip. For the past year I set up some home PT exercises and some exercise with my dog. But I can no longer safely do many of them (the dog is getting noticeably older, too). I’m wondering if I should go back to the lonely exercises on the machines at the gym. I’ve tried Silver Sneakers, but I lack the balance needed for most of the steps. I’m trying Chair Yoga but haven’t learned the routines well enough to turn my attention to chatting with my fellow participants. I think what I need is a social group of coffee drinkers who meet at the gym and then go visit and talk afterwards. Not sure how to find them.
My point, and that of Dr. Sapolsky: we will only REGULARLY do exercise if we enjoy it. Social interaction can be an important factor in contributing to that enjoyment.
|Posted by mandlfoxworth on October 29, 2018 at 4:45 PM||comments (0)|
Customizing effective exercise for your HOME environment is not well integrated into normal PN treatment. Because PN saps strength, Physical Therapy (PT) prescriptions for strengthening and balance exercise are common, even if the central role of exercise in PN is rarely stressed. But I think home PT visits to setup an exercise program should be part of normal treatment. Can it be?
I'm a big advocate of exercise. Why? Because I've seen it work for me. Puzzled by the connection between PN and muscle weakness, I worked many months, going through several versions, to create a layman-level presentation to the group on the logic behind it. (The write up on the details page about the March 2018 meeting has link to a PDF with speaker notes. Original PowerPoint version available on request.)
Nevertheless, I'm NOT a big exerciser. I try and sort of succeed. I think "I do more than most”. (I’ve heard that most people rate themselves as "above average" on ANY "good" personal characteristic, including exercise. Ain't math great!)
When I exercise, all the good things happen (I feel better, I'm proud of myself, etc., etc.). BUT, like most people I don't "have" to do exercise "right now". I don't have a job that requires it. Honey-dos and the dog might demand to be fed or let out, but that's about it. I have an exercise schedule and goals. BUT. But. But. Yes, the pattern is clear.
Developing a Custom Exercise Plan with a PT Specialist in My Home
I asked my doctor if I could get someone to come to my home to help with my Physical Therapy effort and review my home for safety features. Last year (early 2017) our PT specialist came to our house for a series of visits and we worked up an aggressive exercise program that led to dramatic improvements. Really, it did!
Nothing Lasts Forever
Now, almost 2 years later, life and PN is eroding my exercise plan. My other goals elbow in. Shopping, eating, sleeping (especially napping). Church. Doing my PN support group bit. All those things are getting harder as my body weakens and balance degrades. This morning the alarm went off, as usual, at 6:30 so we could get to exercise class. I'd been up late, as usual. But, for the first time in about 5 years, I stopped, sat on the bed and felt too tired to go. More precisely, too tired to make myself go. Life being complicated (as usual), I dropped my gym membership early this year and moved my focus to exercise at home. I have a vigorous "stomping" exercise with the dog. I can't walk the dog on a lease and can't stand without moving my feet, but dancing to the music while tossing around bits of dog food to a hustling dog is fun. But it's getting harder and its associated fall risk is beginning to concern me. My daily stair climbing, core exercises, and other routines seem harder & I find myself "forgetting" to do them. Arthritis is yelling at me louder.
My "plan" needs a reboot. My short-run focus needs a sharp rap on the head. Probably both.
Why I Think Home PT Visits should be the First Step
I'll ask my doctor to get the PT specialist return and we'll update my PT exercise plan. But what can a web site like this one or any web site or YouTube do for you, the reader, the patient and the caregiver? Realistically, exercise information from the Internet is a nearly incomprehensible fire hose.
1. Without personal help by a human looking at your activity and status it's extremely difficult (probably impossible) to correctly customize exercise plans. A PT person needs to touch you, physically guide you, for you to really understand what is required and correct poor execution. Websites and algorithms cannot provide the physical interaction needed to reflect your personal and home issues/assets. Without that human help, a web site and its included docs, videos, interactive data-gathering and machine learning systems, or books will be limited in what they can demonstrate or describe. Any set of multiple websites or material places a stiff data integration problem on the consumer's shoulder.
2. PT evaluations and training are usually done in a traditional PT clinic. Visits in a PT clinic are good and less expensive. They have their place, especially for follow up, status evaluations and coaching. I went to clinics for 3 years before my home visits. The clinic-based PT personal were top notch, the sessions about the same length and exercises were helpful. But the clinic-base specialist is really restricted in seeing what is needed and adapting the plans. Only a visit to your home can allow the PT specialist to integrate your capabilities, needs and required exercise elements with your physical surroundings. In my experience with home visits, the difference in effectiveness was night and day. I think including an early set of home visits is the best way to get you started in the right direction. Yet such personal attention in the home is expensive in terms of specialist time. The relevant question is the tradeoff between expense and effectiveness.
3. Commercial gyms often have the all the facilities needed for PT evaluation and/or treatment. Personal trainers are routinely used by their clients for advice and trainers are trained to know what is needed for physical health. It seems to me that gyms could host certified PT Specialists But there seems to be little integration of such service providers with the health services sector. There are some programs like Silver Sneakers and some gym memberships are subsidized, but even these programs seem like afterthoughts.
4. After a PT visit, follow-on guidance often consists of printed handouts. The significance of subtle aspects can be lost. Once you have a plan, the internet may help. The available web material, perhaps supplemented with books and pamphlets, then becomes relevant, especially if the PT specialist can help guide you. But such integration with web material seems scarce. Personalized follow on can be efficiently provided by single home visits, PT clinic visits, tele-medicine or, possibly, gym personnel.
5. When we had PT specialists come to our support group meeting, discussions made it clear that doctors and insurance companies do not generally appreciate the critical role of exercise and PT in the management of PN. Only YOU can get home visits by PT – doctors will rarely suggest it and insurance may fight you. Despite lip service, integration is the weakest aspect of specialist-dominated American medical practice.
It seems to me that a standardized approach to home based PT evaluations supplemented with all other tools (clinic visits, tele-medicine follow-ons exams, printed materials, videos, follow-on phone calls, case management conferences between relevant specialists, gym support personnel) is needed.
Does any one know of programs like that?
|Posted by mandlfoxworth on November 28, 2017 at 9:00 AM||comments (0)|
Dr. Gary Kaplan of the Kaplan Clinic in McLean VA, gave a powerful appeal for a wider approach to care, especially for patients for whom pain is a significant issue. He used diagrams from a book he is working on. You can see a version of the same talk he gave us on his website: https://kaplanclinic.com/videos/revolutionary-integrative-approach-management-chronic-pain/ It is presented as a set of 5 25-minute YouTube videos that automatically play one after the other - 2 hours total.
Section 1 of 3: The Medical Concept (Note: The following is my interpretation of Dr. Kaplan’s technical message.)
When the body is injured or sick, the immune system tries to repair itself. In trying to repair something, the body can (and often does) damage other bodily structures. We call this “inflammation”. Inflammation can get out of control. In some cases, the inflammation can be a bigger problem than the initial damage. We take meds, such as aspirin, to keep the inflammation under control and minimize “the collateral damage”. Other means of control include things like rest, sleep, heat, cold, surgery and physical therapy.
When a signal is sent from the body to the brain or spinal cord, the brain reacts, often leading to changes in the body, such as muscle action. Touching something hot causes the body to flinch. We say, “my finger hurts” but it’s really our brain giving meaning to a stream of pain messages from the finger.
When the brain handles a pain message, it uses resources and those resources must be replaced or repaired. The brain has repair mechanisms. Though specialized, they are analogous to the immune system in the rest of the body.
Here is the tricky part – our body routinely replaces/repairs its cells. Normal brain processes can easily handle “hot stove” pain signals. Each brain action uses resources and those resources are repaired and replaced. But chronic pain or chronic/severe illness can cause brain damage that is increasingly costly to repair. There are “ripples” as the brain’s other facilities (emotional, logical, autonomic, etc.) are engaged by the person attempting to deal with the onslaught. If there is pre-existing brain damage due to other problems, the brain’s immune system is more likely to resort to radical approaches that cause further “collateral damage.” Chronic body issues (like PN related pain) or chronic psychological conditions (like depression or PTSD) set the brain up for failure when exposed to a new challenge.
Brain on Fire: Portions of an injured brain can become “inflamed” by its immune system in much the same way as the body. The symptoms of this inflammation and its control mechanisms are much less well understood. But once these inflammatory processes are in place they can affect the body – think about how someone reacts to a migraine headache.
Treat the body only? Once the brain is inflamed, removing the bodily problem and its associated flow of messages will lessen the workload on the brain but not necessarily deal with the ongoing battle in the brain. Messages will continue being sent to the body from the damaged portion of the brain. Other pre-existing problems in the brain will continue. Treating only the body problem may work, but our country’s experience with PTSD has taught us to be respectful of the need for psychological support.
Treat the Brain only? Sometimes only psychological symptoms are seen. There is no apparent bodily problem. Refer to Figure 2 again; if the brain is trying to handle signals from an undiagnosed body problem (such as celiac or Lyme), treatments that focus only on the brain are likely to fail. Dr. Kaplan showed us the statistics from the table below. Treatments such as sleep therapy, meditation, drugs, psychotherapy, and counseling can fail, even when combined with diet and exercise changes. Like the Dutch boy’s experience at the dike, pressure from an untreated body problem will constantly “spring a leak” around the best brain therapies. The implication: there can be a significant payoff to a complete medical history and diagnostic investigations when the patient shows only behavior issues and those issues relapse or do not yield to normal therapies.The body problems need to be discovered and dealt with to successfully handle brain issues.
Section 2 of 3: Integrative Medicine concept – “Without the right question ….”
Section 1 tries to make the case that pain (being a “construct” of our brain) is best managed by an integrated approach that considers the interactions between body and brain. Proper diagnosis is the result of an integrated approach. Without a good diagnosis, we are flying blind. Is the right question “What’s wrong?”
Medicine can operate in “silos”. Cardiac, Gastro, Ortho, Psychiatry, etc. etc. The policies that govern US insurance, doctor training and medical practice reward “specialists” far more than diagnosticians. Primary Care Physicians, the ones you would assume specialize in diagnostics, are the most poorly paid “specialists”.
There are published national and regional rankings of specialists (doctors and institutions). While these rankings tend to measure narrow criteria, at least they exist. Not so for primary care physicians. A 2014 Wall Street Journal post (1) on choosing primary care doctors put it this way: “There are no available data on how well physicians do on their board exams, or perhaps even more important, no widely available data yet on how well patients with various significant medical issues are being managed in terms of morbidity and mortality. Existing websites that claim to grade doctors (https://www.informedpatientinstitute.org/) are too sparsely populated with comments to make them reliable.”
In a 2016 essay on KevinMD.com (2), the author says:” … The challenge is to make that initial broad assessment that points toward the ultimate, specific diagnosis. That is a skill not easily taught in medical school, because it involves gauging multiple probabilities simultaneously and sifting through countless extraneous details in patients’ medical histories, lab tests, and exam findings. … In all the [literature on quality] I read, little mention is made of the value of accurate diagnosis; are we focusing too much on simple housekeeping parameters, measuring only what is easy to measure? Looking at malpractice statistics, failures and delays in diagnosis make up most claims in primary care. That would suggest that what patients value and expect most is to be correctly diagnosed.”
The pitch Dr. Kaplan made most forcefully is that his practice focuses on diagnosis. Further, since he tends to specialize in cases of chronic pain (i.e., brain stuff), he wants to make use of the blooming research on
To me, “What’s Wrong?” sounds like the right question.
Section 3 of 3: The right question is required, but not necessarily sufficient.
So, should we all rush over to Dr. Kaplan’s clinic?
To me, that suggests six sub-questions:
1. Could there be an undiagnosed condition that would benefit from a focus on diagnostics? If someone has PN symptoms but are otherwise healthy (other than the normal craziness that we all have), then the diagnosis problem may be simple. Once the “usual suspects” are checked there may be little justification for further investigation. Of course, the list of “usual suspects” expands over time (pre-diabetes has been added), so you need to stay alert. And research may turn up treatments that could apply.
2. Is chronic pain a major issue? For most of our members, pain is an issue, but not a major one. When a major issue, Dr. Kaplan suggests that there is an unresolved issue that may yield when the brain’s involvement is explicitly addressed.
3. Are there alternative diagnostic services and how good are they? Within a given insurance plan (such as Medicare) your options may be limited. I spoke to a local financial advisor and he recommended contacting one of several “concierge” practices to see if they have services that could replace or supplement the services of your primary care doctor. The concept of “second opinion” need not apply only to specialists.
4. Given a diagnosis, how will your care be coordinated and resources be delivered to you? Insurance in-network services like Aetna and Kaiser make claims about their communication systems and the central role of their primary care doctors. I my experience, those claims cannot be verified. The reimbursement systems and record keeping requirements all work against a focus on diagnosis and coordination, since it is difficult to express those activities as a “service code” and outcome measures are primitive or non-existent. On the other hand, such systems can effectively marshal needed resources. Independent PCPs can have difficulty with both communication and access to services. That is especially a problem with Medicare (with its low payment rates) and certain specialties (such as psychiatry and counseling). People with enough money can ignore this – the rest of us cannot. An organization like Kaplan or (perhaps, other “concierge” groups) are available only to those who have enough money to work outside the normal insurance world. On the other hand, if normal care seems inadequate, a few piggy banks may be a wise sacrifice.
5. What resources will be used for treatment? In the case of the Kaplan Clinic, there is a tendency to specify use of in-house resources, when available. A few of those resources (such as labs, medicine and physical therapy) can be partially covered by insurance plans, but many cannot. In a typical insurance network there is a set of in-network resources and outside resources is limited or not reimbursed.
6. Can you trust what you hear?
|Posted by mandlfoxworth on October 30, 2017 at 12:35 AM||comments (1)|
For the past six months my wife has been fighting a back injury. There have been ups and downs, progress and relapse. Currently she is in the recovery-from-relapse phase. Discouraged. Hopeful. Determined.
But mostly pain. Constant pain. Her struggle with this pain has driven me to reconsider my attitude towards pain and pain relief.
Nature equipped us with a pain system. "It only hurts when I xxx." Response: "Don't xxx!" We would not survive childhood without these warning signals sent by of our nerves to our brain (and other parts of our nervous system).
If I stub my toes I can do something. I can (1) wait for the toes to heal and (2) learn to avoid stubbing them again. [Personally, I do other things like yelling and crying, but those are just aspects of "waiting".]
Our perception of pain is mostly in our head. My brain tells me that my toes hurt. But it is not my toes that hurt - pain is my head's interpretation of signals. As long as my PN-afflicted toe nerves are alive and to some degree functional, they will keep sending their distress calls. I don't know how to stop them, though the pattern seems to change sometimes. But I can do something about how those signals are handled by my brain. More importantly, I can do something about how those signals affect the rest of my life.
My toe pain starts at zero and steadily builds during the day. Since it seems relatively minor (compared to what others describe) all I do is keep my brain busy with other activity. I work on this web site and PN related volunteer work. Housework, cooking, eating, talking, arguing, exercise, shopping, planning, volunteering, TV, radio, visits, Skype. We listen to recorded courses as we fall asleep at night. The "pain signals" are not gone, just less relevant. Pain has increased considerably over the years, but it has not had much functional effect. In the future, pain may play a larger role in constraining my functional capability, such as requiring medications with serious side effects. Pain can force trade-offs. For me, for now, that’s not the case.
My wife has migraine headaches. She has learned ways to work through all but the very worst of them. Her back pain is not worse than migraine, but her treatment options are more limited. She must physically rest to allow the inflamed spine tissue and nerves to recover. She must keep her physical therapy routine. She cannot make as much use of her normal "keep busy" techniques to redirect her brain away from the pain. The human spine is "evil" in the sense that it has practically no feedback nerves to warn us before we do something harmful. She's had to learn from painful experience what her activity limits are. She's had two relapses during this six months caused by exceeding those limits. Pain is now in the center. She's found that playing a certain computer game helps. She can focus almost all her attention on that game and the backpain fades into the background. The game helps even when she has both migraine and backpain. This treatment is keeping her sane while her back recovers. Her world has become much smaller as she pours most of her energy into recovery. And recovery will come.
In principal, treatment for chronic pain can focus on two aspects. Stop the pain signals or change the effect those signals have on the way we live our lives. I hope I'm wrong, but I know of no treatments of the first type for PN-related chronic nerve pain (unlike my wife’s back pain which we expect to decrease considerably). There are many treatments of the second type (such as my activity routine and my wife's computer game).
Ever since her migraines stated as a teenager, my wife has tried many forms of relief from this trick her brain plays on her. They all have limitations.
• Activity, “fighting through the pain”, has proved the most reliable. Distractions are important. At home, she plays the radio or runs the TV as she works. But some activities are impractical or dangerous when pain is severe.
• My wife’s computer game leaves her with dry eyes because she fails to blink enough. That’s a risk to her vision.
• NSAIDS, like aspirin or ibuprofen, can help, but heavy use led to “acid reflux” that has taken years to correct. NSAIDS are now basically unusable for her.
• Opioid meds quickly lose their power and require increasing doses. They led to addictive dependence that was difficult to shake. She now lists codeine as an “allergy” to avoid automatic prescribing by doctors. Surgery becomes a very careful dance.
• Self-hypnosis was very effective. It needs constant practice to retain and somewhere she lost that ability. She may try to reacquire it. “Relaxation recordings” attack the same therapeutic path but are less effective for her. Both are time-consuming and prevent other concurrent activity. For me? I couldn’t make it work.
• Acupuncture was very effective and lasted longer than one might suppose. But not something she could do on her own and impractical and unaffordable given migraine frequency and unpredictability.
• Special meds, like Topamax (topiramate), had significant side effects (Patients refer to Topamax as “dope-a-max” because of its dulling of intellectual acuity). Besides that, the brain adapts; its effectiveness steadily faded. Pharmacy companies are excited about potential profits from new research on more targeted migraine drugs. Patient caution is merited.
We are all different. Placebo effects are among the most powerful ever seen. If an "unproven" "snake oil" treatment works for you, give thanks. If a treatment that others swear by doesn't work for you, it may "really work" for those others. The evidence for pain treatment efficacy is unconvincing because the problem is hard, the treatments are legion, the patient population is diverse, the brain adapts and research money is scarce. The treatment that works for you will be one that allows you to function and pursue other life goals despite the pain. For most of us with PN, "being pain free" is unrealistic and irrelevant. We just want a compromise that works.
|Posted by mandlfoxworth on March 4, 2017 at 11:20 AM||comments (0)|
Mike Foxworth's preliminary take on our current survey results:
A sample of 16 is small, but interesting trends seem apparent.
PAIN makes life hell. There is plenty of pain apparent at our our PN Support group meetings AND in these responses. But these results suggest that PN related MUSCLE WEAKNESS, with its associated movement limitations and physical danger, are of greater concern to the people who've taken this survey. Likewise, the respondents seem to have participated more in muscle related treatments than "pain relief" treatments.
The sample is small. If the above summary of our results is true, why?
We must be careful not to generalize. The sample is small and not random. It may be too "self-selected" to reflect the general population of PN patients.
Or maybe I have my own bias and I'm all wrong. I hope not. Regardless, I am willing to keep working on it.
|Posted by mandlfoxworth on December 4, 2015 at 11:20 PM||comments (0)|
This is the first version of the DC Peripheral Neuropathy site. I am not sure if this version will be useful, since I am in the beginning stage of checking it out.
At the current time it has
- A home page with
--- Some text, listing some conceptual-level goals for the site
--- A link so that a member can register or log in . I have not yet figured out how the register process works (presumably an administrator has to approve any new members), but I logged in as myself so I could write this blog entry.
--- A drop down list of sub pages. There is only one sub-page at this time, containing a copy of one of Steve's summary documents from a 2012 presentation about PN.
- A blog page (this page) with one entry (this one). If a member logs in who has authority to create or edit an entry on this page, tools will appear on this page to allow the entry to be created. This page will also show any comments that members (or, possibly, the general public) make on a particular entry. Again, I have not figured out how that works either. There can be multiple blog pages so alternative viewpoints can be heard. Maybe multiple blogs on one page?
- A Contact Page. This can be used to send an email message to the moderator. Unfortunately, in the free version of this product (which is what we are currently using) we are limited to 24 messages a month, which would probably be a problem.
Mike Foxworth, Administrator First Class [Finally, I have a title!]