The PPS Manager Newsletter 1/06

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PPS logo January 2006

In this Issue:

PPS and Diabetes by Rick Van Der Linden
The Benefits for the Disabled by Rick Kneeshaw
Year Four, part 4 – by Gladys Swensrud

Letters and much more…

Meeting reports:

San Diego Coachella Escondido Hemet Riverside
Big Bear Victorville PSP of Orange County

FROM THE EDITOR

Hi Fellow PPS Manager,

        Let’s start the new year with a reminder. If those of you who are on direct Medicare have not signed up for Part D, the longer you wait the more it will cost. (See PPS Manager November 2005)
         In this issue you will be able to read the final installment of Gladys Swensrud’s summery of her fourth year of PPS. She learned a lot and shares all of it. Thanks Gladys, and we are looking forward to your book.
         Rick Kneeshaw, San Diego PPS Group leader informs us that there are a lot of ways disabled people with moderately low income can save money by filling out some forms. Although his information is limited to his area, San Diego county, with a little research you can find the resources in your area.

Diabetes is a major problem in this country. The main reason is too much food and not enough exercise. It’s the American way, but it’s bad for us. It’s especially bad for those of us for whom exercise is not an option. However, that doesn’t mean we can’t do something about it.

Have fun .... Rick

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PPS and Diabetes

By Rick Van Der Linden

What is Diabetes?

The pancreas produces the insulin our cells need to process glucose. If the pancreas fails to make enough at the right times or if for any reason the cells are unable to use the existing insulin, the blood sugar (glucose) level can rise dangerously high and we become very sick. The disease, if ignored, can kill quickly or it can slowly destroy the entire body.
There are two basic types of diabetes.
Type 1 diabetes used to be called juvenile diabetes because it usually strikes before 30 years old. Today it is called Insulin Dependant Diabetes Mellitus and, as it’s name suggests, insulin injections are necessary to manage blood sugar level. It can come on very quickly, often after an illness such as the flu. Symptoms include frequent urination, extreme thirst, increased hunger, and weight loss.
Type 2 diabetes is the one we are most familiar with because it comprises about nine out of ten cases of diabetes. It is sometimes called adult-onset or Non-Insulin-Dependant Diabetes Mellitus. As suggested by the names, it comes on later in life and insulin injections are not necessarily required.
This is a sneaky disease because it can come on slowly as blood sugar rises and remains high. Over time, blood vessels and nerves may be damaged, causing eye, heart, blood vessel, nerve, and kidney disease.
Type 2 diabetes is the one we’ll look into here.

A Lot of People Get Diabetes These Days.

Diabetes costs our health care system $130 billion a year. That’s because there are 18 million diabetics. And, not only do diabetics require frequent checking of blood sugar level, but many are on drug or insulin therapy as well. And, each year 40 thousand get kidney disease, 24 thousand go blind, and 82 thousand have amputations.
There are also 41 million people who are prediabetic. That may explain the prediction that in 25 years the number of diabetics is expected to double.

Why?

It’s partly genetic. Early people were hunter/gatherers. Because the available foods varied seasonally, it was feast or famine. The human body developed the ability to store food internally in times of feast so they could survive the times of famine. They did this by regulating insulin to facilitate storage and burning of fat deposits as needed. Throughout most of the world these days, with all kinds of food available all the time, it’s always feast season. If you are a recent descendant of hunter/gatherers (this includes Native Americans, Africans, Islanders, and South and East Asians) there is an increased risk of diabetes.
But, it’s mostly lifestyle. It’s too easy for us to grab a snack and sit down. Television, computers, even books (of course, this does not include the PPS Manager newsletter J), when coupled with super-sized cokes and fries, potato chips, and double latte cappuccinos from the drive through can add up to disaster.

What are the signs?

Those of us with Post Polio Syndrome will recognize many of the signs of diabetes. They include: Excessive thirst, frequent urination, blurred vision, increased hunger, irritability, tingling or numbness (called neuropathy) in the hands or feet, and fatigue. These symptoms can come on slowly and may go unnoticed until after the damage is done.
Other factors that may be associated to the overall problem are high blood pressure and high cholesterol – both conditions commonly linked to excessive weight.
For us, there is the added danger of attributing these symptoms to PPS and doing nothing about it.

What can YOU do?

The main cause of diabetes is too much of the wrong kinds of food (mostly sugars) and not enough exercise. It’s true that there are thin diabetics, but sick people often lose weight as a result of being sick.
If you are overweight, can’t exercise, and have a few of the warning signs, see your doctor. As with any disorder, early detection and treatment will increase your chances of a long, healthy life. Simple blood tests can detect the problem, and early treatment is also simple and very effective, starting with diet and exercise.
If you can’t exercise, and diet alone doesn’t work, your doctor might prescribe pills or insulin injections. There are new things coming along all the time.
Whether you think you have diabetes or not, why not commit yourself to a better diet? Although it would be good to eliminate French fries, cokes, mashed potatoes and gravy, etc. you could actually eat the same foods as before, just eat less. Think about it. If you wanted to reduce fats and sugars by 50%, all you have to do is eat half as much.
Oh, and if you smoke, you’re asking for all kinds of trouble.

The good news according to WebMD: “Modest weight loss of as little as 5% to 10% of your body weight can lower your body's resistance to insulin and increase its ability to use insulin more effectively.”

For more information visit www.diabetes.org, www.idf.org and ask your doctor.

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Benefits for the Disabled
By Rick Kneeshaw

Believe it or not there are some advantages to being disabled, and least they are advantages as compared to not knowing about them at all! Here are three we can start with in this issue:

Property Tax assistance

If you are a resident of California, pay property tax, and are disabled you may be eligible for up to $472 off your property taxes. The process to receive the tax assistance is not easy, but if nearly 500 bucks is as important to you as it is to me, and you are willing to download and complete a form from the State of California website, then you may be the beneficiary of property tax assistance. You will need to go to the State of California website (http://www.ftb.ca.gov/individuals/hra/index.html) to get the form to complete. Since there is a limited amount of assistance available not everyone who applies gets help but it's worth a try. Of course there are some limitations and conditions, but unless you are rolling in dough, you might want to apply.

Free Fishing License

The California Department of Fish and Game now issues free five year fishing licenses to anyone with a "mobility impairment" and uses mechanical assistance to walk (braces, crutches, scooter, etc). This is a $150 value. Go to the State website at http://www.dfg.ca.gov/licensing/fishing/sportfishingfreereduced.html to get more information and details. The website says you will need a doctor's signature but my experience has been that if you go into your local Department of Fish and Game office using your chair, crutches, etc. and are obviously disabled, they will hand you a free license right over the counter. Now if I could just catch a fish!

Reduced Gas and Electric Rates

Nearly every utility company in California will provide you with a "Medical Baseline Allowance" that effectively lowers both your gas and electric bills by about 20%, depending upon your actual usage. You will need to call your utility company or go to their website, and have them mail you a form that your doctor must complete and sign stating that you are eligible. In San Diego County go to SDG & E's website at http://www.sdge.com/residential/assistance_services.shtml#2. For Pacific Gas and Electric PG&E go to http://www.pge.com/res/financial_assistance/medical_baseline_life_support/. When completing the form be sure to have your doctor note that you had polio and have "cold intolerance." Not all the forms specifically list "polio" because there are not many of us left, but those who had polio and have sensitivity to cold do qualify. Remember gas rates are going up so don't miss out on this one.

For Southern California Edison customers go to http://www.sce.com/CustomerService/RateInformation/ResidentialRates/MedicalBaselineAllocation.htm

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Forth and final Installment
Post Polio Syndrome – Fourth Year Lessons
February 2004 to February 2005
By Gladys Swensrud

One important thing I believe all polio survivors must keep in mind as they try to understand their personal issues related to old polio is: Each and every problem could have another origin beside PPS. The most difficult part is to separate them into the two different categories of PPS related and other. I, personally, have had a tremendous problem doing that, and I can only guess other survivors have had the same trouble. When I look at my situation living with: ongoing muscle fasciculation and fibrillation, Bulbar issues like - loss of gag-reflex, unprovoked/silent reflux, and Mixed Sleep Apnea – daily muscle exhaustion (from simple use of my muscles, which may be explained by my EMG as having severe chronic neurogenic changes), neuropathy in my toes, bilateral Hoffman’s signs, brisk reflexes, muscle issues related to imbalance in my musculature, etc., I am not certain where to apply responsibility aside from old polio.

And here is the problem in easy to see terms:

Muscle Fasciculation –

I know occasional muscle fasciculation is not uncommon for healthy people, such as in that twitching eyelid, but my fasciculation problems are found throughout my body each and every day. They are clearly the most numerous in each muscle determined by my EMG to be identified as having old polio. They are also in several spots that make me suspect those muscles are the next to begin to cause problems. When I awaken in the morning, often muscle fasciculation is the first thing I notice about the day. This indicates to me that my muscles are tight while sleeping, and some times, in fact, I awaken with my muscles so tight that I must mentally work to make them relax. It is these days when I am especially grateful that I use Neurontin.
I have read time and again, if you restrict activities, the muscle fasciculation problem is much better – to that I am a major skeptic. Even on days when I have been sedentary, if I tighten my muscles to move my legs – even just to change positions – a giant motor fasciculation will move across one of my quads to remind me in spades that they are there. And sometimes, for no apparent reason on sedentary weeks, my fasciculations are particularly active.
One interesting piece of information I learned this year is that fasciculation in a muscle can be large. Perhaps some of the myoclonus muscle movements I thought I felt were actually just giant fasciculation. I try to assess by thinking whether or not my leg actually is forced to move by the force of the contraction. It is hard to know because when they happen to you, they surprise you and always feel powerful.

Bulbar issues –

Loss of gag reflex – [The gag reflex is elicited by stroking the pharyngeal mucosa (back of the throat - smile) with a tongue depressor. A gag reflex can be elicited in most normal persons.] Add to that a clear diagnosis of a Mixed Sleep Apnea breathing deficit, (Mixed is OSA and CSA), which is likely to be caused by polio weakened neck and breathing muscles – compounded by the fact that my brain may not always be reminding me to breathe. Then layered on that is the vulnerability of unprovoked, silent reflux, and this all looks a bit more complicated.

Muscle exhaustion is easily understood for those who experience it.

My friend, Sandy, who is in her second round of treatment with ovarian cancer, really hit the mark when she said, “Now I understand what you mean by muscle exhaustion.” I think she interpreted it perfectly! She was correlating how she feels on chemotherapy to how I feel when my muscles are weary from any overuse and produce that flu-like feeling. The basic problem is that our brain sends the signal to move, but the body is just to tired to listen.

The inability to stand for long because of leg muscle weakness –

Clearly defined muscle issues in both legs from my EMG.

Neuropathy in my toes - the "ill-defined sensory symptoms of paresthesia (burning, prickling sensations) or focal pain." (From the book Amyotrophic Lateral Sclerosis, A guide from Patients and Families) (Explained in detail below!)

Bilateral Hoffmann's signs –

Anyone who has had a thorough neurological exam has had this easy test. "In the upper extremities, Hoffman’s sign may indicate abnormality. This reflex is triggered by the quick release that occurs after the forceful flexion of the joint at the tip of the middle finger. A reflex inward flexing of the thumb on the same hand is a positive response.” Yet, to confuse me further in trying to separate PPS from other, it could also be said, “…bilateral positive reflexes may not be abnormal because they are not unusual in healthy young individuals. (From the book Amyotrophic Lateral Sclerosis, A guide from Patients and Families)]

Brisk Reflexes –

I digress just slightly here because my brisk reflexes and how they fit a Post Polio diagnosis have baffled me since the inception of my PPS problems. Typically polio presents with paralysis, muscle atrophy and hyporeflexia (a decreased reflex response), and ALS presents with muscle atrophy, fasciculation and hyperreflexia [defined as overactive or over-responsive (brisk) reflexes]. How did I get caught between the two? I had many questions and absolutely no answers. While doing some peripheral reading, I stumbled upon reference to a book titled, Clinical Neuroanatomy made ridiculously simple by Stephen Goldberg, M.D. In reading it I learned a tremendous amount about the brain and how it works to direct the functions our bodies perform. What I was specifically reading to learn was: What part of the brain controls reflexes? What I actually learned was the brain is central to all the issues surrounding Post Polio Syndrome. It added credence in my mind to the approach Dr. Richard Bruno took in his book, which I recommended in my Year 2 summary, The Polio Paradox, What You Need To Know.
Since I could not pinpoint the exact reason for my hyper reflexes, I contacted, Dr. Susan Perlman, a well-known and respected neurologist in the southern CA area, who is Director of the Post-Polio Center at UCLA. I posed a thoroughly clear picture of my problem to her. Her response was, “…It appears that some polio survivors may develop what are known as upper motor neuron signs in the context of a classically lower motor neuron problem (PPS). The original polio was "poliomyelitis"--the myelitis part referring to an inflammation in the spinal cord (home of the upper motor neuron pathways). I suspect that the original infection did inflame the adjacent upper motor neuron pathways (perhaps causing the severe painful spasms some patients experienced) and left these pathways scarred in some way and open to future changes (like brisk reflexes).”
Because of Dr. Perlman’s response, at long last I had reached the point where I could stop frantically searching for answers to the Upper Motor Neuron (UMN) symptoms, which took so much of my time and energy. And her explanation fit perfectly into the chasm of information that bewildered Dr. Munsat and other researchers at one point in his book. I will always be thankful that Dr. Perlman was so accessible to answer questions because this one answer enabled me to finally find comfort with a possible solution to this issue, which had plagued me for four years. And it allowed me to move on to do other, more constructive things with my time.

Weak muscles that cause a domino effect elsewhere in your body.

In my case, weak shoulder muscles that imbalance the bones in my shoulder and arm. Ouch! Clearly a muscle issue in my polio-weakened left bicep and triceps determined by my EMG could play a part in this muscle riddle.

Etc.

I suspect each of the above is old polio related, but of course there is no way for me…or anyone else…to tell. When you see a neurologist, they note things like bilateral Hoffmann's signs may indicate abnormality, but they may not be abnormal because they are not necessarily unusual in healthy young individuals. Or they will relate to you that neuropathy in your toes can indicate a problem, but it also isn’t unusual to find them in healthy elderly people. However (to confuse the lines of division between PPS and other even more), as stated in Amyotrophic Lateral Sclerosis, by Hiroshi Mitsumoto, M.D. and Theodore L. Mundsat, M.D., on page 32,
“In our studies nearly 20 percent of patients with motor neuron disease (180 with ALS and 36 with progressive muscular atrophy) had ill-defined sensory symptoms of paresthesia (burning, prickling sensation) or focal pain. However, sensory examination showed no abnormalities except a decreased sensitivity to vibration in the toes, which is not unusual in healthy elderly people.”
My dilemma is: Along with everything else, how do I categorize the problem of burning in my toes, and, as verified by my doctor, decreased sensitivity to vibration; how, exactly, can I explain these along with each of my other neuromuscular concerns in one body? Are these PPS issues or other? It just all blends together. And what, exactly, is other?

         I have filled this year with research, investigations [as my interest in Creatine Kinase (CK) levels] and my quest to give back to the world a little for all I have been given. My connection to, and volunteer time with, the San Diego Neuro Network (SDNN), a collaboration of fourteen neurologic and neuromuscular agencies in the San Diego area, has been a tremendous positive in my life. I have met so many wonderful people, whose life’s purpose is to find solutions to the suffering others endure with neurologic and neuromuscular disorders and diseases.
And I have filled many wonderful hours making blankets for Children’s Hospital, knowing they will bring warmth and joy to every child that receives one. I spend a great deal of time watching the ads and sorting through bolts of fabric to find just the right ones for children in the 10-18 age categories. As my best friend, Kathy O’Neill, and I have learned: fabric shopping and making blankets can be addictive; we find ourselves spending Saturdays driving from shop to shop for just the color or pattern we want to complete a blanket, but at the same time, we are creating a wonderful memory together by sharing this adventure as best friends!
         I am delighted that my work this year to bring more books on Post Polio Syndrome to the San Diego area libraries was successful. Rotary International in the San Diego area has paid for 4 new titles to be added to the San Diego Public Library system. The books will be tracked to see whether or not they are utilized, and if there is a great demand for them, Rotary International has agreed to fund more books in the coming year. And, at the same time, the San Diego Neuro Network has been generous with their book gifts this year as well. We, as a group, donated books from each agency to the county library system; then working closely with the San Diego City Library staff, we culminated this effort, by delivering books representing our agencies to the San Diego City Public Library system.
         Special kudos are assigned this year to my wonderful hand surgeon, Dr. DeLois Bean. I adore her! One of the unrelated PPS issues, which I would identify in the other column, although it too could be PPS related (but was not in my case), was impending carpal tunnel surgery. Dr. Bean is the ultimate professional! She identified the problem, discussed options with me, made me feel confident my choice was the correct one in my case, scheduled surgery in short order, and the outcome was magnificent. Once again, as with Dr. Lamantia and Dr. Murray, it is a team effort that creates the best result.
         The time invested this year in managing my health issues was, in retrospect, a bit overwhelming. This is partially due to my tenacity in trying to bring the breathing issues of PPS to the attention of my HMO. It was also due to my interest and investigation of CK, but mainly it was attributable to keeping my physical issues in check. When I was first diagnosed, I remember a neurologist intimating I should go home, learn to accept this new challenge and spend my time doing other things I enjoy and not wasting it on doctor visits. Perhaps that would work if, when you first went to see a doctor, they understood all the issues related to Post Polio Syndrome and could address all facets of your concerns correctly. Unfortunately we have no such comprehensive clinic in place at this time in San Diego. But, if I had followed that doctor’s advice, how long would it have taken for my undiagnosed breathing deficit to slowly and methodically rob my body and mind of life giving oxygen…the point to which I was headed…and for me to just quite thriving completely? Until Post Polio knowledgeable doctors are in place in the San Diego area, those of us with PPS must be ever vigilant!
         As I begin year five, I will continue to work toward more recognition within my Health Maintenance Organization about the breathing issues surrounding PPS and other neuromuscular disorders. I realize I pose a real challenge to them, and they are far from appreciative that I continue to solicit their help! Whether or not you win, sometimes, certain issues are just worth the fight!

Contact and additional information can be found at www.swensrud.com/postpolio or approval to copy this in its entirety can be obtained by emailing Gladys Swensrud at swensrud@packbell.net.

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With thanks to each doctor that was named in this year’s summary for his or her help and assistance. As in my summaries from years 1-3, I sent each doctor I named in Year 4 a copy of Post Polio Syndrome – Fourth Year Lessons. I sought and obtained permission from each of them to use their names prior to printing this summary. They have been, and continue to be, the best support system a patient experiencing the late effects of polio could ask for! I feel so fortunate to be in their care &/or in contact with them!
Glady

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MEETING REPORTS

SAN DIEGO PPS GROUP

The Christmas party was great! Good food and good music with good friends.