Ask Dr. Maynard
Welcome to Ask Dr. Maynard, a new feature of Post-Polio Health. Frederick M. Maynard, MD, a longtime member of PHI’s Board of Directors, is a recently retired physiatrist, a specialist in physical medicine and rehabilitation. He dedicated a significant portion of his academic and clinical practice over the last 25 of his 40-year medical career to the unique problems of polio survivors.
Questions posed to Dr. Maynard
by PHI Members in Post-Polio Health ...
Click on the Volume/Number to read the answers.
Question: As a young kid I contracted polio in my right leg. Apparently it was a mild case because I had no noticeable effects until my late 40s or 50s. At that time, I experienced right leg pain if I had not exercised for several days or about a week. If I exercised moderately then I had no pain. If I exercised very intensely then my right leg would end up much more sore than the left one (and recovery took longer).
I discovered this on my own, never even thinking that the polio might have something to do with it. But I came across an article about post-polio syndrome and a light came on. At that time, I learned about your organization and have followed your publications ever since.
For the past decade I’ve been a competitive cyclist, racing from April through August and training intensely year-round. I mostly compete in road racing, but have also participated in extreme endurance mountain bike races like the infamous Leadville 100 in Colorado.
I had my legs tested for cycling power and discovered that my right leg generates substantially less wattage (a measure of cycling power) than my left leg, at all levels of effort. Needless to say, training is problematic. I often have to reduce my training days per week because my right leg has had enough, yet my left leg could do more. If I do more, then my right leg suffers.
The best scenario for pain prevention seems to be frequent easy-to-moderate exercise. But that’s not too conducive to high-performance racing, in which I’ve done pretty well in my age-group categories, including a New York State Championship.
The real issue is, what am I doing to my right leg with all this intense exercise? I lift heavy weights in the gym to strengthen my legs for ski racing in the winter. I realize I’m very lucky compared to many people with post-polio syndrome, and in fact I’m not even 100% sure that’s what I have.
I am 64, and as the years go by the condition of my right leg gradually gets worse, and I fear for my later years. So the whole subject of exercise and pain is something I’d like to learn more about. I wonder if I should just stick to easy or moderate exercise, but that would mean giving up competitive cycling, which I’m loath to do. you have any advice for the family members who are advocates?
Question: My sister who had polio in 1953 at age 17 was affected from the waist down. She also struggles with bipolar disorder. Last winter she was hospitalized on a behavioral health floor for 44 days. Her crutches were taken away because they were considered weapons. She spent the days in a wheelchair and did not receive any physical therapy. Upon her release, we found she has lost what strength she had and now uses the wheelchair all of the time and is in a nursing facility. It is difficult to convince hospitals to allow the use of the usual assistive devices or equipment, and even more so, when it is a mental health facility. Do you have any advice for the family members who are advocates?
Question: I am 82 years old and have PPS. Two years ago I fell backward down the stairs and broke my C2 and C3 vertebrae. I still can’t turn my neck enough to drive myself. I get worn out doing nothing, and I am tired all the time. I had two chair lifts installed, which does help, and I can walk with a walker, so I am able to get to church. Do you have any suggestions for me?
Question: I had what was termed a “mild” case of polio in 1951 at age 7. Other than a barely noticeable curvature of the spine and temporary weakness in the neck, I had no ill effects and was back in full action within a couple months. I played sports throughout high school and have run a variety of races since my early 30s, including marathons and, yesterday, at age 71, I completed a nine-mile race.
A friend made me aware of PPS in 1985. Reviewing the literature, I saw that avoiding strenuous exercise was recommended, but I have continued to run on and off through the years without apparent PPS issues or serious structural problems.
I do have questions about two conditions. One is Restless Leg Syndrome, which I’ve experienced on and off since about the time I had polio, and I wonder if polio survivors are especially prone to it.
My other concern is with random “muscle tears” in my lower and upper legs, which I have experienced since my early 40s during times when I am running frequently. Curiously, the tears don’t happen when I am in the act of running, but more likely when I am rambling through the house. I have worked with a sports physical therapist who does not believe I have PPS. Do you see any relationship between these two conditions and polio or post-polio? Thank you for your ongoing commitment to helping polio survivors. It is remarkable and deeply appreciated.
Question: Why does no one ever address the problems that polio caused to the digestive system? I had polio when I was 6 years old and have had problems with my digestive system ever since. Has there been any research on the effects polio had on the digestive system?
Question: I had polio at age 5 in 1968 apparently contracted from the oral polio vaccine. The acute illness lasted about a month, then a slow recovery ensued (upper and lower right limb involvement) that took about a year. Is there any difference between PPS symptoms
in patients who have contracted the disease through vaccine and those who contracted it naturally?
After many years with mysterious health problems, I have been diagnosed with PPS by my family doctor, but neurologists who we have consulted are confused by some of my most prominent symptoms. They say that they are not familiar with PPS causing anything more than difficulty swallowing (which I have). However, I also have severe reflux, intermittent gastroparesis, slow GI motility, constipation and right upper quadrant pain after fat-containing meals. Are these added GI problems in line with what could be caused by PPS?
Question: What are the symptoms in patients with post-polio syndrome with facial involvement? I am a PT with facial nerve involvement due to polio.
Question: I had non-paralytic polio in 1949 when I was 2. I now wear two leg braces; one on my polio leg for drop foot and the other one on my left leg because I started dragging that foot. My right leg is always very cold to the touch even though it never feels cold to me unless I touch it. Is there any therapy or anything else I can do to get this atrophied leg warm? I wear compression knee socks and sometimes two pairs of regular knee socks and these do not solve the problem. Thank you for all you do to help polio survivors.
Question: I am dating a woman who had polio, but if you didn’t know it, you could not tell it. We are both in our late 20s and I am very interested in her. I have heard about post-polio syndrome and am wondering what I may expect in our future years if I marry her.
Question: I would like your take on using drugs such as gabapentin or use in treating PPS pain. With the new drug laws, my doctor has prescribed this drug for pain instead of the hydrocodone I was taking. (Editor’s Note: Under a final rule issued by the U.S. Drug Enforcement Administration, hydrocodone combination products are now in a more restrictive category of controlled substances, along with other opioid drugs for pain like morphine and oxycodone. See more ...) I can usually manage the pain during the day but have problems sleeping. Some nights it feels like someone is trying to peel my muscles from my bones.
I am asking because gabapentin is used to treat seizures, but I do not have seizures. When I looked up the usage, it is also given for treatment of pain for the shingles for a period of three to four months. Whatever I decide to take for pain, I will possibly use for the rest of my life. Has anyone done a study of the long-term usage of gabapentin for post-polio pain? I do not want to take this medication and find out it was not good for managing post-polio syndrome.
Question: I have just been diagnosed with venous insufficiency in addition to atrial fibrillation, mitral valve problems and partially closed carotid arteries. I also just had a test to check my arterial blood gases. I use a BiPAP ASV every night and have serious pain some days from coccyx down both legs to my feet. I cannot walk at all, and now I cannot stand for less than a minute without holding on. I have fibromyalgia, and I have a painful left rotator cuff. For two months, I have been wearing compression hose. How does the venous insufficiency fit into this picture?
Question: In 1988, I was your patient at the University of Michigan when you diagnosed my post-polio syndrome. I am preparing for a complete knee replacement on my right leg, which is the one affected by polio. My question is: Should my physical therapy after surgery be specialized to my condition or will normal therapy be OK? My surgeon has not had any dealings with polio patients. Any information you can supply will be greatly appreciated.
Question: My 83-year-old wife had bulbar polio when she was 17. She is now wheelchair-bound and is suffering severe pain from shingles. My question is: Since polio and shingles are both nerve diseases is there any special precaution, medicine or treatment she should have?
Question: I am a 68-year-old paralytic polio survivor from the 1955 polio epidemic. I use two leg braces and a variety of assistive devices. My arms were also totally involved but recovered well. My main problem now is increased weakness and pain in my arms as I depend on them more for transfers. My primary care physician recommended using 600 mg. of ibuprofen three times a day to reduce inflammation and alternating ice and heat. A cortisone injection has also been suggested. Is a cortisone injection advisable for people with post-polio syndrome?
Question: I’m interested in finding out if polio survivors should or should not take beta blockers. I have atrial fibrillation and the doctors keep trying me on beta blockers and I have trouble taking them. Do they work for atrial fibrillation?
Question: My husband had polio at age 8. He is now 71. His left leg has started giving out on him and he falls. He goes to a special trainer, but I’m afraid the trainer doesn’t know how to treat this. What type of exercises should benefit him, and what should he avoid?
Question: I am 66, and I had polio at age 3. My muscles are feeling weak, so if you know what I can do about it I would be grateful. I am depressed about this.
Question: I have post-polio syndrome, and I have also been diagnosed with a viral infection. Will the viral infection take longer to clear up since I have post-polio syndrome?
Question: Have any studies been done to determine if polio affects sexual functioning?
Question: I am a 61-year-old female who has recently been diagnosed with post-polio syndrome. I am looking for the latest research on improving muscle function in the affected limb. Are there new medicines that can improve muscle functioning?
Question: I am a 1949 paralytic polio survivor (at 10 months old). I have rheumatoid arthritis and most of the typical drugs to control pain and progression have frightening side effects. I do well on a modest dose of prednisone and have read in Arthritis Today about a time-released prednisone called Lodotra®. One of Lodotra’s precautions, however, refers to patients who have had polio. Can you tell me why a polio survivor would be at risk for taking Lodotra? It sounds like a perfect solution for me otherwise.
Question: Do you have any advice about sciatica nerve pain? I have been in physical therapy three times a week for three weeks, with home exercises. It helps, but the pain is not gone yet, and my physical therapist gave me some bad news. My hyper-extended right leg has gone from -11 degrees to -13 degrees. I noticed I was not walking as well as I had been. I took off my Velcro knee brace several months ago because I was doing so well, but then noticed I was not walking as well as I used to, so now I am wearing my Velcro knee brace again. My other question is, how far back can a leg go before you can’t walk on it? This is very discouraging.
Question: Are gabapentin or pregabalin effective medications for post-polio neurological damage, the type of damage that leads to leg and hand muscle cramps?
Question: I am 74 years old and had polio in 1954. My recent DEXA scan (to measure bone density) showed I had osteopenia. I have also recently suffered two compression fractures in my L1 and L2 vertebra due to an automobile accident in which I drove off the road over very bumpy terrain. My longtime physician, who is familiar with my PEG (feeding) tube, wants me to have a bisphosphonate infusion. What is this and is it safe?
Question: Several years ago my right ankle muscles gave out after a cortisone shot. I wear a brace to steady this leg. Now, after two bad falls, my left hip will need replacement. My current orthopedic physician wanted to give me a cortisone shot, and I refused, recalling the reaction from my ankle. Now I am frightened about hip replacement, because I fear after the trauma of surgery, it will cause my leg to completely give out, putting me in a wheelchair. Since my left leg was the stronger of the two, I am confused about the decision to have surgery.
Question: I am posting this question for my husband who had polio at age 2. He was affected quite seriously and was not able to stand on his own. He recovered completely, and now at age 52, is seeing signs of post-polio syndrome (PPS) that include weakness and atrophy of his thigh muscles. While consulting a neurologist in India, it came up that the weakness should start in calf muscles first and affect those muscles more. While my husband has seen weakness in calf muscles, the atrophy in his thighs is more significant. Are there other reasons for this? Also, my husband got an EMT done in 2009 and the doctor is advising him to get another one. Is this necessary? We have to pay for all tests ourselves.
Question: I had a Grice-Green procedure in 1955 to correct toe drop and weak foot muscles in my right foot secondary to polio. I have had outstanding results since then. Though I have a gait specific to my disability, I am a hiker and can walk with good hiking boots for as far as eight miles. This is becoming more difficult as my ankle is becoming more pronated. The original surgery fused the right subtalar joint on the right foot and the tendon transfer was attached on the right so that the foot toes out to the right and the ankle collapses more. I am having more difficulty walking for any distance with just sneakers and an orthotic for foot support. Is further corrective surgery ill advised?
Question: I scraped and cut my leg that is most affected by polio. It has not healed after two months. (I am not diabetic.) My family physician is sending me to a wound clinic. What can I expect at the wound clinic? Have you seen slow healing in polio survivors? Do you have any other advice?
Question: I had polio in both legs at age 10 in 1953 and was unable to walk for a year. With therapy and exercise, I pretty well recovered in one leg and can walk without help. How does fatigue affect people who have had polio? I’m constantly tired. A sleep study shows some sleep apnea and some restless leg syndrome waking me up. My good leg is having knee problems, and I will eventually need knee replacement. I’ve had one gel shot last year and will get another one soon. Does the bad leg make me tired all the time or could it just be the sleep apnea? Also, having the good knee replaced will put more pressure on the weaker leg. How does that work out for people in my situation?
Question: I contracted polio in 1984, when I was 3 years old. In 2009, I discovered that I had very high blood pressure with figures ranging between 160/90 and 200/110. I have been on medication since then but there is no change thus far. At times I feel so weak after taking medication. My question: Is there a link between post-polio and high blood pressure?
Question: I have a question regarding differential diagnosis specifically utilizing electromyographpy (EMG, a test that measures the electrical activity of muscles at rest and during contraction). I am 63 with a family history of stenosis. I have low back pain, sometimes radiating diagonally to the hip/thigh region and increasing in intensity, leading to sudden inability to rise from sitting to a standing position from my wheelchair.
An MRI shows L4-5 stenosis. My right leg has always been very weak. The neurologist attempted EMG in the right leg but said there is no electrical response and so there is no way to identify nerve root involvement for possibly repairing the problem. Is there another way to do an EMG on an essentially flaccid leg or another test to diagnose the origin?
Question: I have lower left leg PPS atrophy. Since hernia surgery recently, I haven’t been able to walk or bicycle as I regularly used to do. I’ve sometimes noticed worrisome foot edema that is more pronounced and sustained since the surgery. Other than trying not to sit for too long, cutting back on salt and elevating the leg more, is there anything else I should be thinking about or doing for this?
Question: I had been having redness, swelling and lot of pain in the foot of my polio leg, and then the knee-lock in my brace caliper collapsed, and I fell, resulting in a fracture at the base of the first metacarpal bone, extending into the joint surface (cuneiform bone) in the polio foot. There was no dislocation as the foot was in the brace and shoe. I wore a cast and nursed the foot back to health (for five months) through regular physiotherapy and hydrotherapy. Recently, I have noticed redness, swelling and pain again in the foot of the polio leg. Is this a cause for worry? This leg does have osteopenia.
Question: I had polio in 1948, and I am now 65. Adapting was less difficult due to the helpful information gathered at support group meetings. However, I am not finding information or answers that address this issue: Has breast reduction and surgical reduction of abdominal fat been suggested and utilized with other post- polio women?
While remaining relatively active and napping daily, the genetic characteristics typical in my female family members have increasingly resulted in unwanted, exhausting weight gain. The weight impacts the low back weakness and pain initially brought on by accidental injury before I discovered that recovery was hampered by post-polio syndrome. I’m in physical therapy three times a year and firmly believe a 30-pound reduction would resolve the repetitive back spasm episodes by better balancing the body load to this weight bearing area. Any response would be helpful and appreciated.
Question: I recently came down with Bell’s Palsy. To rule out a stroke, I had an MRI. This showed some, what was thought to be, old injury. I don’t ever remember having any such thing. It is in the right front lobe. I had polio in 1949 at the age of 2, and I now have PPS. The polio affected my left leg. Could what showed up on the MRI be caused from the polio?
Question: I am now 76, had polio when I was 4. Since post-polio syndrome (PPS) hit me, I needed a leg brace and walk with two canes. I can never remember a day without pain, but now it seems to have spread all over my body, not just my legs. My question is: How do you feel about the pain patch, Duragesic®, 12mcg to start. My internist feels that this will help. I would just like to get an OK from someone who has experience in treating PPS.
Question: I had paralytic polio 64 years ago at the age of 13 months. My left leg had major paralysis and a small amount to my right leg. I always walked with a severe limp. I was diagnosed 25 years ago with PPS as I was developing new weakness in my legs. Four years ago, swallowing began to bother me and also volume when blowing breath. In the past two years, my left fingers have “clawed,” and now my tongue muscles are weak causing speech problems as are my vocal cords somewhat. I recently saw a neurologist who thinks I have ALS. Do you know of any cases of people with PPS and ALS?
Question: I have been having a LOT of pain through my butt into my lower back. I looked up muscle groups and think I see what is causing the problem. I sit at my desk nine or so hours six days a week in order to survive financially. I never realized sitting in a wheelchair could atrophy some muscle groups. Do you have any words of wisdom for PPSers who use wheelchairs? At night I lie down after supper to watch TV and unwind.
Question: Can post-polio syndrome (PPS) be the cause of a nerve ending problem over the stomach region? I have annoying, tingling pains over the stomach region at about skin level or just below. It continues on and off throughout the day but not serious enough to wake me at night. The doctors I have visited can’t seem to find a reason for the problem and suggested it may be PPS but don’t know enough about PPS so I end up with no solution for the continuing mild pain. Also, temperature appears to affect me and brings the pains on.
Question: I had polio in 1940. With treatment and exercise I was able to live a “normal” life and taught school for many years. At age 50, I started having new weakness. I am now 79 and my legs have shown greater weakness. I wear a full brace on my left leg and a short brace on my right leg. Lately I have been falling, even with my walker. My left leg is very swollen but medical tests do not show anything. Could the late effects of polio be causing the swelling?
Question: Do you know of any polio survivors who are experiencing numbness in their affected areas? I did some physical therapy recently for about six weeks using both sides of my body to improve the strength in my unaffected leg, and noticed that my left arm (the affected side) was becoming numb and then later in the day, my left leg would also become numb (just the top part of my arm and leg). My family doctor is sending me to a neurologist to see if I have a pinched nerve but he and I both think it is polio related. Since I have stopped physical therapy it has quieted down, especially if I use Aleve®, a heating pad or warm water at the pool. I'd appreciate your advice.
Question: I had all three types of polio. I was paralyzed from my throat down and was unconscious. Now I am 69 years old and have been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). Could polio, post-polio and POTS Syndrome have any connection and/or relationship?
Question: My physiatrist says that paraplegics have a lot more diabetes, so I started wondering how post-polio and spinal cord injury compare with regard to the disease.
Question: My father-in-law is 88 years old and has post-polio syndrome. He has had trouble sleeping for the past several years, and he claims that it “takes more medication for people with post-polio syndrome.” My wife is his caregiver and controls his medications so he will not overdose. What is your professional opinion?
Question: I have a severe rotator cuff tear and an orthopedic surgeon has recommended a shoulder replacement because of the severity of the tear and the presence of significant arthritis. I had polio in my right leg and use my left leg to lift/stabilize myself on crutches. Apparently the increased dependency has weakened my arms and, perhaps, injured them. The surgery may help or may create complications. Can you share any knowledge to help me make an informed decision?
Question: I’ve asked my doctors in the past about PPS, and they indicate that at my age – 65 – it is highly unlikely that I could develop PPS since it has been so many years since I contracted polio. Do you have any statistics on PPS occurring 60 years after having polio?
Question: My physician retired, and my new primary care doctor is “re-evaluating” everything. I am nervous because he is questioning my medications, and I am not sure he understands my history. Can you help me understand his approach and offer assuring advice as he and I get to know each other? I am especially concerned about my new doctor’s making me reduce the pain medications I need.
Question: I am a polio survivor who has had untoward and paradoxical responses to muscle relaxants and meds in particular, but also possibly to lidocaine pain patches used for the first time this year. I was hospitalized, through the emergency room, with cellulitis of my stronger leg while on vacation. I don’t remember the first few days in the hospital, and suspect this was treatment-related. I found it scary to think that my medical history information was not treated as important! I would like to know if this reaction relates to being a polio survivor. I’m open to new information and suggestions of how to avoid this in the future
Question: I read about muscle wasting in people who age (sarcopenia) in the syndicated column of "Dr. Donohue." As a 78-year-old polio survivor who is getting weaker, I am not sure if it is post-polio weakness or aging weakness. Is there a way to tell the difference? Does it matter? Are the management recommendations for each cause?
Question: Has there ever been a study of whether antidepressants help relieve muscular pain and fatigue? Is it a plausible treatment for people who have had polio?
Question: I am a polio survivor with PPS. Recently I began to suffer severe knee instability, but a sports medicine specialist recommended against braces, saying they would inhibit the muscles from regenerating. It seems to me that polio-atrophied muscles will not regenerate anyway and that braces would at least help to prevent collapse. Your thoughts?
Question: Can a Grade 3 concussion cause the onset of post-polio syndrome (PPS)? I developed the symptoms during recovery from a concussion and have been diagnosed as having PPS.
Question: Are there any nutritional issues that polio survivors should pay special attention to? Are there any particular dietary needs or concerns? Any supplements that are beneficial?
Question: Can I regain some muscle mass and strength through exercise? I would love to work my legs harder, but have heard that I could damage my muscles since they may not have the capacity to recover. Should I experiment with a strenuous routine to see if I can improve strength, or do I risk doing damage and further deteriorating my legs?
Question: I have seen advertisements for products that claim to "cure" PPS. From all I know, there is no cure. Do these products have any beneficial ingredients that may help us?
Question: I am aware that as polio survivors recovered from the initial bout with polio, we went through a process called denervation. Does this process of losing anterior horn cells (AHCs) and establishing new nerve pathways continue with post-polio
Question: As my leg muscles become weaker, I notice that now I use my toes more than my whole foot when I walk. A polio friend of mine has made the same observation about his method of walking. Is this coincidence or is there a connection between weak leg muscles and using toes more to walk?
Question: I am 69 and had polio in my right foot when I was 20 months old. I have had tendon transplants, heel cord lengthening surgery, and some toes fused. ... Since a total hip replacement, I tire much more easily and walk with a cane. ... Should I walk as much as possible (30 minutes or so a day) or “save my strength” ...?
Question: I am a male age 60 who contracted polio at age six months and Guillain-Barré syndrome at age 40. I was diagnosed with post-polio syndrome at age 55. Four weeks ago I had testosterone pellets implanted when I found out I had a major testosterone deficiency. ...I felt compelled to write to you and describe the results in hope that you may pass them along. I have no logical answer other than the testosterone replacement.,,, Can you explain the lack of response?
Question: Often we polio survivors have very few options that are helpful in understanding our circumstances and what direction to take. Thank you for being available to provide this important service. Here is my question in three parts. ... (PPS) is not life threatening. Is this still a valid statement? Is there any evidence to the contrary? ... does PPS affect the brain’s ability to function normally in speech, sight or thought processes (through stress or brain lesions)?
Follow-up Question: In Vol. 25, No. 1 (page 3), Dr. Maynard responded to a question about “using my toes more than my whole foot to walk now.” .... Ms. Toher asked, “What can I do about this?
Question: People in my post-polio support group say I need to see a “polio doctor.” What is a polio doctor? Do you agree that polio survivors must see a physician with such a designation? Do I need my old medical records?
Question: Is there a definitive medical position if polio survivors should take the flu vaccine each year? Last year when I went to get the vaccine, the staff notified me that Guillain-Barré syndrome is one of the risk factors of the vaccine. Should one not take the vaccine if you have a history of paralysis?
Question: I have concerns regarding the H1N1 vaccine. Are polio survivors considered an at-risk group?