Jun 20 2012

Polio Perspecvtive

admin @ 10:17 am

Comments at the bottom of the page

Polio Perspective – June, 2017

Millie Malone Lill, Editor        Wilma Hood, Publisher

In This Issue

Physical Therapy and PostPolio Sequelae  (PPS)

By Shanti Chacko Molayal, PT, DPT

Posting to the Coffee House

by Barry Considine

A Cautionary Talk About Post Polio Shoulder Surgery:  One Story, Three Perspectives

By Sunny Roller, M.A. and Frederick M. Maynard, M.D.

With Age Comes Wisdom

by Millie Malone Lill

THE WEB CORNER

Other Polio News Letters

A Little bit of Humor

******************************************************

Physical Therapy and PostPolio Sequelae (PPS)

by Shanti Chacko Molayal, PT, DPT

For almost ten years ,I had the opportunity to work in a clinic that took a multi-disciplinary approach

towards working with patients who have PPS.  Although the clinic is no longer in existence, I wanted to share with you what physical therapy aimed to do in the clinic , what information was important for us to know about the patients we worked with, what PT’s evaluated, and what our treatment interventions

were.

GENERAL GOALS OF PPS PHYSICAL THERAPY

Our aims as PT’s working with the PPS population were to:

1)  Decrease symptoms of pain and weakness;

2)  Teach activity modification and energy conservation techniques; and

3)  Promote safety and efficiency with mobility and daily function.

GETTING TO KNOW YOU

Information from a patient with PPS that is helpful to have prior to a physical therapy evaluation would be the following:

The areas of your body or the physical functions that were originally impaired by Polio

If you had OR currently use a leg brace

If you use any adaptive equipment or assistive devices

If you have any new pain or muscle weakness

If you have frequent falls or balance issues

If you have difficulty walking or difficulty with stair negotiation

If you have difficulty with bed mobility and transfers

If you have difficulty performing  self-care tasks such as dressing or bathing

If you have difficulty performing tasks inside or outside of the home

If you have decreased energy, endurance or have poor sleep quality

Your social history (i.e. work, retired, living situation)

Past and current medical/surgical history, test results and medications

PPS

PHYSICAL THERAPY EVALUATION

After reviewing the “GETTING TO KNOW YOU” information with the patient, the PT  would direct their evaluation towards what the patient’ s areas of limitation were.  Many times the PT Evaluation was a combination of both an orthopedic /neuromuscular evaluation and a  functional evaluation because the patient would have joint or muscle pain along with a limitation in their ability to function or mobilize.

The PT would assess the ability to stand and sit, the technique of getting in and out of bed, the ability to perform stairs safely, measure leg muscle circumference and leg length, test balance and upper and lower extremity muscle strength, and observe gait and posture.

PPS TREATMENT INTERVENTION

Based on the physical therapy evaluation and consideration of the patient’s goals, the treatment plan  could include (but not limited to) the areas of focus below:

Safety with Mobility.

It’s important to assess whether a patient needs an assistive device for mobilizing in the community or

at home. This can be a wheel chair, chair lift, walker, or a forearm crutch amongst many other  mobility devices. It can also come in the form of a lower extremity brace (orthosis) . It’s important for the   therapist to assess muscle strength, fatigue levels, balance, fall history, pain, home environment,

and the patient’s support system when recommending the proper device or orthosis, to make mobilizing safe and  efficient.

With regards to leg braces, finding a licensed orthotist whom you can easily access and has experience in working with patients with neuromuscular conditions, is desirable.

Energy Conservation:

A common issue among st patients with PPS is fatigue. Some Polio survivors also have respiratory impairments that cause shortness of breath with activity and even with rest.

Doing activity logs where you can correlate possible relationships of shortness of breath, pain and fatigue with your everyday activity is an effective method of determining whether you need to eliminate or modify the performance of your daily tasks, use adaptive equipment, OR take more rest breaks throughout your day.

Pain Management:

In addition to pain medications that your physician may prescribe, they may also refer you to a physical therapist to assist with pain that they suspect is from a musculoskeletal/ neuromuscular source. If your pain stems from postural dysfunction , overuse or compensatory strategies secondary to longstanding

weakness, PT’s will educate you on proper posture and positioning with your static and dynamic activities.  This can include (but not limited to) the use of lumbar cushions for sitting, cervical pillows

for sleeping, or making your workstation more ergonomic. If your pain is of an orthopedic nature, PT’s can teach you non fatiguing flexibility and stabilization exercises to help restore or maintain function.

Modalities such as ultrasound or heat can provide temporary relief and are primarily utilized as an adjunct to manual therapy or exercise. PT’s may also choose to use manual therapy techniques such as

joint and soft tissue mobilization, myofascial release, or gentle muscle energy techniques which can be

helpful to address restricted mobility.

FunctionalActivity Training:

Patients with PPS can have difficulty with getting in/out of bed, or standing up from lower surfaces or standing to cook amongst other limitations not mentioned here. Physical therapy treatment may focus on safe techniques to perform those everyday tasks . Additionally PT’s may also  recommend durable medical equipment and adaptive devices to make those tasks less painful,  less effortful and most importantly SAFE for patients.

EXERCISE AND THE PPS POPULATION

Many of you may be wondering about aerobic or strengthening exercise in the PPS population. Since many of our patients came to the clinic being very symptomatic with increased fatigue, newer pain and

weakness, as well as having difficulty performing their daily activities, our recommendation was that they suspend aerobic or strengthening exercises during their time in our program. Our goal was to reduce the pain and overuse of weakened muscles and focus on conservation.  It would be my recommendation to review the latest research related to exercise prescription recommendations for the PPS population.  However, if you feel more fatigue, more pain, or more weakness with exercise or any activity-LISTEN TO YOUR BODY and stop doing it!

LOOKING FOR A PHYSICAL THERAPIST?

I would recommend that you work with a therapist that has experience with orthopedic and neuromuscular conditions who can work with you 1: 1. Obviously it would be a PLUS if they have experience with the PPS population OR can do the research to understand the pathophysiology of the polio virus, late onset problems, and treatment of the polio survivor. It would also be helpful if the PT has working relationship s with the following:

  • a licensed orthotist if you are a candidate for a leg brace ; and
  • an occupational therapist if you need to address limitations in activities of daily living performance or wheel chair management.

Posting to the Coffee House

By Barry Considine

Maybe this is a good day to post in the coffee house. I have been seeing some new members. I don’t recall sharing my tale from recovery to disabled and a new life after that.
For those of us who survived polio and had recoveries that allowed us nearly to forget the braces, the constant PT… Work became very important to us. Not just being able to work but excelling at whatever we chose as a profession.

Personally, I went through two careers because of undiagnosed PPS. First came restaurants. I began at age 18 as a dishwasher for one weekend, after that I moved into the Pantry, then Sous, and finally Executive Chef of a very popular restaurant. Tired of grease and smelling like broiled stuffed lobster all the time I eventually moved to the front of the house where I rose to Gen. Manager.
Eventually following a series of bad falls on kitchen floors, I was urged to find a new career.

Next up I became a title examiner/abstractor, with eventually the largest abstracting outfit in Baltimore City. Then at age 45, I took my family camping for a weekend. I had hiked in Shenandoah National Park many times. Over two days I hiked two trails I once considered “nice walks”. When I arrived at my office on Monday morning, I could not make the three block walk from the garage to my office.

Fast forward past some crazy Barry stuff like walking to a hospital when I thought I might be having a heart attack because I could still walk there faster than an ambulance would be able to get to me. I was evaluated for coronary disease and told my chest & back pains are muscular/skeletal in nature. That’s when I finally got diagnosed with PPS.
For the better part of my adult life as I dealt with ever-increasing pain and weakness I asked is this related to my polio. NO WAY was always the answer until right around my 45 birthday.
What followed was five years depression, antidepressant drugs that made feel as if I no longer had a soul. I wasn’t sad but I wasn’t happy. Then I saw an inspiring story so at the age of 50. After being told my scooter wasn’t cutting it, I got an electric wheelchair. I sold the scooter, bought a 21’ daysailor, and taught myself how to sail.

Next, I attended a lecture on a political topic, and recruited to be the face of a new law for chronically ill patients. Suddenly I am a very visible political activist. That’s good for society.
It was good for me because it gave me pleasure that broke through the numbness of antidepressants. In a very short time after first shutting down an outboard motor and hearing the wind in MY sails my depressive episode had ended. The pills went wherever unused meds go after you turn them into the pharmacy.

Does this mean just because I found a new purpose, one my body can handle, I no longer have a bad day? NO WAY! Just before beginning this post, I was weeping. I had spent 15 minutes trying to move my bowels; I needed my crutches to help me get up. [I retain the ability to walk some] I fight those same tears when I have to call my wife who has been by my side throughout and tell her we’re calling out for dinner because I cannot do the other thing that still gives me great pleasure – cooking.

So newbies, yes life is changing, heck it’s being thrown in cement mixer and we never know what’s coming out. Know two things, 1. You already beat back the greatest crippler of children known to man. 2. You can beat this too. The same way we did the other – we adapted. Peace everyone.
✌️ —Barry Considine—

A Cautionary Tale about Post-Polio Shoulder Surgery: One Story, Three Perspectives

By Sunny Roller, M.A. and Frederick M. Maynard, M.D.

One must be very careful about choosing to have orthopedic shoulder surgery, especially if one is a polio survivor with a complicated disability. It’s not because of the surgery itself. It’s the complexity of the rehabilitation process and the uncertainty of functional outcomes that make it perilous.

A few months ago, we met with longtime friend, Liina Paasuke, over a lingering cup of coffee for a heart-to-heart conversation about her recent ordeal with shoulder surgery. Liina graciously told us her story that day. We asked her questions, listened, and took notes. Then the three of us shared ideas about how to proceed.

Over a casual cup of coffee, Liina Paasuke and Frederick M. Maynard, M.D. connect about the issues.

Since that empathetic and thoughtful exchange, we have individually continued to reflect upon Liina’s difficult experience and have each come to evaluate the situation from our varied perspectives as the post-polio:

  • medical specialist
  • surgical patient and
  • friend/consumer

We first present biographical background information about Liina, followed by the account of her surgical experience. Dr. Frederick Maynard then reflects upon what happened from his perspective as a post-polio physician. He offers important medical information and insights.  Liina then provides a personal update as she continues her rehabilitation process. Finally, Sunny Roller reflects upon the whole experience as a friend with a similar post-polio disability who, like others, may someday face the same decision–whether to have such surgery—or not.

Due to little previous discussion of, or experience with this matter, a decision about having shoulder replacement surgery can suddenly confront and confuse people who are growing older with polio or another neuromuscular disability.  It is our hope that by presenting Liina’s account and our individual perspectives of it, readers–both consumers and professionals– will more fully understand the issues and benefits of the choice to have, or to prescribe, shoulder replacement surgery (also known as Total Shoulder Arthroplasty or TSA).

Liina’s Story

Liina was born in 1948 in a German displaced persons’ camp. She developed paralytic polio at age 17 months as she and her Estonian parents were arriving in Michigan after an immigration journey to the US. She spent most of the next four years in a Grand Rapids, Michigan hospital and underwent several surgical procedures on her severely paralyzed legs. By age six, when she began mainstream schooling, she was able to walk only by using bilateral long leg braces, a corset and bilateral forearm crutches.

After high school graduation, she studied at the University of Michigan and earned a Master’s degree in Guidance & Counseling. She had a 36-year career with the Michigan Department of Vocational Rehabilitation at the University of Michigan, mostly providing counseling for people with physical disabilities. During her college and early employment years, Liina was entirely independent in all personal and advanced activities of daily living (ADLs). She walked as far as she needed or wanted to go using her devices with minimal difficulty. She drove a regular car with hand controls. In 1979, she purchased a 3-bedroom home that she still lives in today.

Although Liina’s general health remained excellent, by the early 1980s she found it increasingly difficult to walk long distances and experienced symptoms of Carpal Tunnel Syndrome. In 1984, she obtained her first motorized scooter, had a ramp built for entry into her home and purchased a van with a rear swing-arm lift for scooter transport.

Over the next 20 years until her retirement in 2006, she very slowly gained about 25 pounds and gradually decreased the amount of time and distance that she walked due to increased effort and greater fatigue. By 2006, she was essentially ambulatory inside her home only. She began dragging her right foot during swing and could not negotiate a single step. By 2010 due to slowly declining strength and endurance, she could no longer complete bathing and toileting in a regular bathroom. Voluntarily, her longtime church’s

The First Congregational Church of Ann Arbor congregation immediately raised money to partner with Liina and a home improvement contractor.  Together, after Liina tapped into personal funds and the church garnered additional financial support, volunteers got to work to complete the necessary architectural modifications.  Within a few months, they had fully redesigned and remodeled Liina’s home bathroom, bedroom and kitchen for fulltime scooter use. This collaboration with an exemplary church enabled her to remain independent in self-care and homemaking, primarily from her seated position.

Beginning gradually in 2012, she developed increasing right shoulder pain, especially with overhead elevation and turning. After her physiatrist diagnosed her with rotator cuff tendonitis, she had some short-term benefit from several bouts of Physical Therapy (PT) over the next three years. Nevertheless, she lost Range of Motion (ROM) and strength in the right shoulder. Her pain levels rose and severe pain was more frequent.

Her Choice to Have Surgery

By late 2015, Liina decided to investigate surgical options for her right shoulder problems because of concerns that further worsening would jeopardize her ability to continue to live independently. Her primary goals were to maintain the ability to walk a little in her home, to stand up after toileting and to  reach higher objects in her home. Her secondary goals were to decrease pain and increase ROM in the right shoulder.

She was referred to an orthopedic surgeon who specialized in upper limb joint replacements and who performed “Reverse Total Shoulder Arthroplasty”(rTSA). In this procedure, the head of the humerus is removed and replaced by a shallow cup that articulates with a rounded ball (head) which is implanted firmly into the glenoid fossa of the scapular bone. This newer procedure is thought to restore better motion and strength in people whose shoulder rotator cuff muscles or tendons are torn or completely frayed from degeneration and cannot be repaired.

The surgeon led her to believe that the use of her arm would be as good as before. However, she was unable to have him answer specific questions regarding the eventual post-operative function of the arm for routine weight bearing which was critical for standing up and for transfers. The doctor said that the right shoulder would need to remain immobilized and bound to her chest for 6 weeks and thereafter she could gradually do anything she wanted to do and was capable of doing with that shoulder.

Despite reservations, she decided to proceed with the surgery. To prepare, she arranged to stay in a ‘subacute rehabilitation bed’ at a rehabilitation center with a good reputation in her community. She also quickly purchased an adapted minivan with a side ramp that would allow seated entry using her scooter. The r-TSA was done on April 13, 2016 and three days later, she was discharged to the rehab center.

Rehabilitation after Surgery

She was dependent in all ADLs while her right arm was immobilized. She received therapy services and gained some modified independence in self-care using her non-dominant left upper arm and shoulder.

After four weeks, facility managers reported that they would very soon discharge her to go home alone because there were no further goals to meet Medicare criteria for her continued stay until she could use the right arm again. She knew she would be unable to function at home alone. Appealing this decision based on her pre-existing condition of post-polio paraplegia was unsuccessful, but the facility did eventually allow her to stay longer after a follow-up visit with her surgeon. He gave her permission to begin some controlled motion exercises with the shoulder and to use the right upper limb below the elbow for ADLs.

After a nine-week stay, the rehab facility discharged Liina to go home. She could now perform basic ADLs from her scooter with great difficulty– involving much time, effort and ingenuity. She received home therapy services for three months and increased the strength and ROM of the right shoulder.  By five months post-surgery she was able do all of her basic self-care independently with only mild to moderate additional effort and modifications than before surgery.  She still could not stand up again after normal seated bathroom toileting, which limited her community re-entry.

Her right shoulder ROM was very good and she had no significant shoulder pain. When she began outpatient PT, her therapist noted surprising strength deficiencies in her shoulder’s scapular stabilizing muscles, which he determined had not been specifically targeted for strengthening during her home PT exercises. He began targeted strengthening exercises for the right scapular stabilizing muscles and advanced her generalized upper body-strengthening program in order to assist her reach the goals of standing independently after seated toileting and for reaching high objects from standing.

At seven months post-surgery, she felt ambivalent about whether the surgery had been “worth it”, but she was more hopeful about the chances of reaching her primary goals. She remained quite taken aback by how long her recovery was taking.

Looking back, she felt that her surgeon had misled, even betrayed her, with false expectations, conflicting messages and unresponsive communication. Before the surgery, he said that recovery would be easy. She soon recognized his lack of knowledge concerning the polio survivor’s potential challenges post-surgery. Since early on, he had ignored her questions. Her frustration grew when he would not return her emails and phone calls. He stated he had successfully operated on two other post-polio patients, but would not provide clearance for her to talk with them about their experiences. She continued to have some negative feelings about both his insensitivity and what seemed to be a disregard for her disability.  At this point in her recovery, she worried more than ever about staying financially and physically independent.

Frederick M. Maynard, M.D.—The Post-Polio Physician’s Perspective 

Identification of Surgical Goals

One important lesson from Liina’s story is how essential it is for people with chronic lower limb motor disabilities to identify their goals for having any shoulder surgery. This is particularly true for any functional goals that have been lost and are hoped to be regained, or for functional goals critical for independence that are in jeopardy of being lost. While pain reduction and improved ROM may be desired, and are considered likely to be obtained from a successful surgical procedure, the achievement of any eventual post-operative goals dependent on higher levels of upper limb strength are harder to predict. Due to many unpredictable intervening variables, their achievement may require prolonged challenging effort by both professionals and patient. Honest and frank discussion about this reality pre-operatively between surgeon and patient can mediate any disappointing results.

Accepting the Lack of Medical Knowledge

A second lesson from Liina’s story is greater awareness of how little the medical community knows or understands about the unique needs of people with chronic lower limb motor disabilities. This case in particular elucidates the current paucity of medical knowledge about successful post-operative restoration of weight-bearing function with the shoulders and upper limbs after a new reconstructive orthopedic procedure on the shoulder joint. Given the impressive results of TSAs for reducing pain and restoring functional ROM for otherwise able-bodied people, these procedures are likely to be offered to and considered by people with chronic lower limb motor disabilities more frequently in the next 10 years. This is a predictable result of first, the high frequency of shoulder pain problems observed among people with Spinal Cord Injury-related paraplegia (>80% incidence after 20 years post-injury.  Second, it is inevitable that there will be greater need for TSA in the burgeoning older age cohort of people living with conditions such as post-polio, spina bifida, cerebral palsy, muscular dystrophy and other neuromuscular conditions who routinely use their upper limbs to bear full body weight. A medical literature review identified only two reports that addressed outcomes of TSA among a few people with paraplegia (including two patients with polio).  [1]  [2]   Medical and surgical complications were numerous and functional outcomes beyond pain reduction and ROM were not well described.   Just as hip and knee joint replacement surgery has become commonplace in the USA for treating older age-related “wearing out” dysfunction of these  joints, shoulder joint replacement is becoming more widely and readily available. Many efforts at new and improved designs of utilized hardware and for surgical tactics are likely; but specific study, or even note, of the special needs, problems or complications of people with chronic lower limb disabilities having these procedures seems unlikely.

Current Recommendations

Not enough is known about post-surgical functional outcomes in people who regularly need to use both shoulders to support their full body weight. Consequently, for the present, I recommend great caution when considering TSA or rTSA. Clear goal identification for having any procedure, excellent communication between patient and surgeon about goals and special needs, and consideration of second opinions are also recommended. I am also promoting to my surgical and rehabilitation colleagues further investigation of strength and functional outcomes achieved after these procedures among people who rely on body weight bearing shoulder function.

Liina Paasuke—The Post-Polio Surgical Patient’s Perspective

Post-Surgery Shockers

Now, nine months after her surgery, Liina reports that she is slowly regaining her strength and function, but is still not back to her pre-surgery capabilities. Astonished by the potent consequence of short-term muscle disuse for polio survivors, she has been dismayed by several post-surgery shockers. First, her total upper body strength is diminished, on both the right and the left sides. Second, crutch walking is now grueling and, right after the operation, she could not even move her right leg to take a step, as she was used to doing before the surgery.

Third, Liina is functionally able to do a greater number of activities than she could right after her surgery, but she has also needed a greater number of environmental supports, which have been expensive. She purchased an adapted minivan and paid a contractor to construct a new door built into the sidewall of her one-car garage for entering and exiting her car, using the side ramp. She also bought an electric bed that raises, lowers, and has bedrails. She had more functional grab bars installed in her bathroom and bought a seat height extender for her scooter. She has newly hired a physical therapy assistant who helps her at home with exercises and some tasks around the house at $15.00/hour, which is a reasonable rate. Liina discloses that all of these new adaptations at home have “eaten away at my confidence for any future travel that would involve staying overnight in hotels, condos and friends’ homes.”

Lessons Learned

Liina shares that she has learned firsthand how debilitated a polio survivor can become after just two months of inactivity. She was led to believe she would have a short recovery time. But even nine months after surgery, an all-encompassing sense of exhaustion when doing previously-normal activities has been overwhelming.  As she now works to train her right shoulder muscles to compensate and operate in different ways than before, she cautions post-polio consumers to “carefully weigh any surgeon’s expectation against reality”.

She also recommends that the post-polio patient learn everything possible about Medicare payment guidelines. Scared that she would either be forced to go home alone before she could function, or have to pay out of pocket the daily cost of her nursing home rehab stay, she thanks Post-Polio Health International (PHI) for sending information about Medicare’s rehabilitation improvement standards.  See article titled, “Judge Orders Medicare Agency to Comply with Settlement in ‘Improvement Standard’ Case, Provide More Education” at http://www.medicareadvocacy.org/medicare-info/improvement-standard/

After sharing this article with the Rehab Center, they got around it somehow, but she felt that at least it was self-empowering to wave it at them. She also warns not to trust the knowledge that an inexperienced social worker may have. Hers was not helpful at all. She also had a home physical therapist early on who was not helpful due to lack of post-polio knowledge. Often left to advocate for herself from her weakened position, Liina confides, “It’s tough to fight when you’re down”. So, the advice is: prepare. Find a strong, enduring personal advocate before surgery and go into surgery armed with a list of resources such as senior centers, The Area Agency on Aging, Medicare, other insurance company numbers, PHI, local polio networks and support groups.

Liina has been home for seven months now and is doing regular physical therapy at home and at a special supervised physical therapy gym program. She has re-joined WeightWatchers to lose a little weight. She reports that the pain in her right shoulder is indeed gone and she moves it much more easily. She also reports that this experience has certainly been enlightening, but she would definitely think twice about having the same surgery in her left shoulder, which her surgeon recommended, if it further deteriorated.  She is still not back to her desired level of functioning yet but is hopeful about making new gains. Liina says her story of surgery is definitely still a journey in progress. Maybe she’ll know if it was worth it in two years…or so.

Sunny Roller—The Post-Polio Friend and Consumer’s Perspective

As a polio survivor who grew up walking with crutches and braces and now at the age of 69 uses a scooter full time, I am very grateful to Liina for having the courage to reveal her private story to the rest of us. Even from the sidelines, hers has been a fear-provoking experience for me to witness and imagine. In the past, I had had firsthand experiences with broken legs that had taken nine months to heal and involved extensive rehab—and that was when I was much younger.  What would happen with major surgery at this stage in life? At times, I was so worried for her. But I have also been impressed with her hutzpah. From my perspective, she took a huge medical risk. She chose to venture down the proverbial “road less traveled” not knowing what to expect; and it has indeed been a somewhat darkened and physically dangerous forest filled with ignorance and falsehoods to battle. But Liina is steadfast. She has been resolute about getting through this ordeal.  She has been tapping in to her ingenuity and sense of hope all along the way, and is closer to her goal of continued independence with a shoulder that doesn’t hurt.

My Take-Away Lessons

Liina has shared her arduous ordeal so we may better prepare for any future major surgery that might be prescribed for us. After being close enough to witness and empathize with Liina’s experience, here are my take-away lessons:

  • We all have much more to learn about this type of surgery for polio survivors
  • If surgery is prescribed, always get a second or third opinion from a non-surgeon post-polio specialist
  • If you have a bad feeling about the surgeon and his office staff, trust it. Find someone else
  • Research all the alternatives to having this type of surgery. Consider thoroughly the future impact of any functional risks if you decide to opt out of this surgery
  • Know that muscle disuse in a polio survivor zaps previously accustomed strength and the ability to function and this is inevitable in any immobilized post-operative limb. Assume that the post-surgical rehabilitation will take much, much longer than anyone expects; then plan accordingly
  • Prepare thoroughly before the surgery. This includes:
    • Making sure the surgeon’s team is informed about the proper cautions for anesthesia and recommended surgical recovery room procedures for polio survivors
    • Finding, even touring and interviewing at the best place for your rehabilitation based on location, skill, reputation, knowledge of polio survivor issues
    • Recruiting a loyal personal/professional patient advocate who will persevere and stand up for you through the whole process–from start to the point of fullest recovery
    • Tapping into your network of family and friends in advance for possible pledges of assistance; asking them to help mainly with what they are good at and like to do (“it takes a village!”)
    • Gathering all information possible about resources that might be needed
    • Talking to occupational therapists in advance about home rehabilitation, care and recovery needs including possible home modifications
    • Talking with physical therapists about alternate ways to transfer and move about during post-surgery rehabilitation
    • Identifying post-polio specialists who will agree to consult with health care professionals about specific post-polio issues. PHI is a great resource for this information
    • As if going away on a trip, preparing your home indoors and out for your potentially lengthy absence
  • After surgery and during the rehabilitation process, know that you and your advocate will need to teach most of your helping professionals about how best to care for you on a daily, even hourly basis
  • Understand that recovery will not be easy, but it might be worth it. Weigh the pros and cons judiciously.

WITH AGE COMES WISDOM

by Millie Malone Lill

Sometimes.  Not always, that’s for sure.  Sometimes age comes all by its little self.  We are going to pretend it didn’t in my case, OK?  So today I will give you the benefit of my experience.  You can’t always learn from the mistakes of others…sometimes you ARE the others.  Such has been my life.

First of all, remember the PPS Motto:  Conserve to Preserve.  As Dr. Bruno admonishes, if something hurts when you do it, either don’t do it or do a lot less of it.  That is great advice.

Rule 1:  Do as I say, not as I do.  I have been known to tell people to take it easy, don’t sweat the small stuff and it’s all small stuff.  Stress is not good for us.  I know you’ve read those words or words to that effect in many of my columns.  However, I am still a typical Type A, with just a dash of Obsessive Compulsive behavior.  That trait has sometimes found me teetering on a ladder instead of waiting for someone to come help me.  I don’t recommend doing that.

Rule 2:  Pace yourself.  Do one major thing a day.  If it is laundry day, just do the laundry.  Don’t try to do laundry, plus go to the grocery store, the library and the swimming pool all on one day.  There will be another day, trust me.  If there isn’t, well, then it doesn’t matter, does it?

Rule 3:  Ask for help.  That is without a doubt the hardest thing for most of us to do.  We are used to being the go to people who help others, not one of those wimpy people who ask for help, right?  It does make us feel good to help some out, so why not share that good feeling with others by letting them help us out?

Rule 4:  Try to develop a positive attitude.  I don’t mean that you have to wear a smile all day, every day.  It is a good thing to look at the bright side, though.  And I most definitely do not recommend you have the “there is always someone worse off than me” philosophy.  For one thing, how would you feel if someone saw you as the someone who was worse off than they are?  Not very uplifting!  Besides that, though, it diminishes your own value.  You have a right to your own problems.  If you are sitting in the ER with a broken leg, next to someone with terminal cancer, your leg is still broken.  You have as much right to empathy as they do.  Just try to think of something you are happy about.  I write a list of five good things that happened to me every night.  It’s my gratitude list.  It send me to bed in a positive frame of mind.  I heartily recommend it.

Rule 5:  Your head bobs sideways as easily as it does up and down.  You can say NO.  If you are tired, but someone wants you to do just one more thing, form your mouth into an O, touch your tongue to your upper teeth, make that noise in the back of your throat followed by the O sound.  Try it…NOOOO.  See how easy it is?  Practice it.

Rule 6:  Give yourself permission to be joyful.  Yes, I am well aware of what a mess the world is in, but I realize that my happiness doesn’t make anything worse.  At the very least, it makes things better for me and sometimes it also cheers other people up.  Watch children play, listen to music, go outside and let the sun shine on your face and the soft breezes kiss your cheeks.  Or enjoy the air conditioned comfort of your own home.  Whatever puts a smile on your face.  There now, don’t you feel wiser already?

THE WEB CORNER

Hookers for the Handicapped:

http://www.transfermaster.com/blog/view-post/Hookers-for-the-Handicapped

State Park Key Component is Accessibility:

http://www.shorelinemedia.net/ludington_daily_news/state-park-starts-playground-project-accessibility-a-key-component/article_0cd55efe-5695-11e7-ad4f-f3b6fe342c0f.html

Overhearing Hurtful Comments:

https://themighty.com/2017/06/overhearing-hurtful-comments-mental-illness/

Disability Advocate Arrested for Protesting

https://themighty.com/2017/06/disability-medicaid-arrest-protest-mitch-mcconnell/

Car Race on a Wheelchair

http://www.transfermaster.com/blog/view-post/Car-race-on-wheelchair

The Wheel Pad, a Wheelchair Friendly House

http://www.transfermaster.com/blog/view-post/The-Wheel-Pad-An-Innovative-Wheelchair-friendly-House-For-People-With-Mobility-Problems

Discussion Draft Senate Healthcare Bill:

https://www.budget.senate.gov/bettercare

Adventures with a Beach Wheelchair

http://www.transfermaster.com/blog/view-post/Adventures-with-a-beach-wheelchair-in-Portugal

Being a Positive Role Model From a Wheelchairhttp://www.transfermaster.com/blog/view-post/Being-a-positive-role-model-from-a-wheelchair

Three Most Violated Accessibility Rules in Air Travel:

https://wheelchairtravel.org/most-violated-air-travel-accessibility-rules/

 

OTHER POLIO NEWSLETTERS

https://www.polioaustralia.org.au/

http://www.papolionetwork.org/

http://nepolioorg.ipage.com/gleanings/

http://www.poliosurvivorsnetwork.org.uk/

http://www.polioplace.org/

A LITTLE BIT OF HUMOR

DANCING PRIEST
Several years ago, the priest began dancing in front of his congregation during his sermons. Curious of this, one of the members asked how this came about.

“Well,” said the priest, “it’s hard to keep an Arizona congregation interested. In the winter, the weather is so nice that they have no interest in heaven. In the summer, it’s so hot that they have no fear of hell.”

 

7 Responses to “Polio Perspecvtive”

  1. Thomas Christian says:

    Ole better git a hearing ade?

  2. ruth says:

    thanks for this news letter. My sister is having the same feeling of when she had polio at 6. I am helping her learn what could be happening. thanks for this as the doctor is not talking about it.

  3. Millie Lill says:

    Ruth, read all you can online and I also suggest that you join one of the Facebook polio sites. You can learn a lot from those of us who have been there and done that.

  4. Hilary Boone says:

    Why do we still have so much hassle trying to get decent medical care. Sharing experiences really does help us realise ‘It’s not just me’ which slightly lessens the frustration and stress. Millie as usual you have done a great job.

Leave a Reply

*