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Category Archives: Polio

Finally facing the truth about Post-Polio Syndrome, abandonment issues and possible child molestation.

Feeling of AbandonmentI have been involved with two really great Post-Polio Support Groups on Facebook. It appears the more I post the more help I can give and get. Yesterday was a very low point with my psychological issues of social anxiety and depression. Yes I am on medication but at times it doesn’t help because meds only provide a kind of band aide effect on many mental health problems.

Today I posted on one group (some editing) the following: Fair warning, this is a long post so for those of you (admit it, there are some of you… hey it is okay, I am the same sometimes…lol) who hate them and find me a little boring, then you may not want to read any further :

Often times, too often, I will have days when my depression and anxiety is off the charts. It was bad when I was working, trying to deal with: Post-polio syndrome and having to defend myself to doctors who knew nothing about polio. One of the worse was a Doctor actually screaming at me, “There is no such thing as Post-Polio Syndrome. YOU DON’T HAVE POLIO. It’s all in your head. Keep seeing your psychiatrist!” Why should todays physicians care about post-polio survivors? As far as they are concerned it is over, why waste time with an obsolete disease?

As symptoms began to increase, I began to see one doctor after another. Often I felt like a complainer, a whiner because of the muscle twitches, spasms, constant falls, upper and lower back pain but worse was the mental and psychological issues (yes most of those psyc issues I buried deep) surfacing because of trying to work through so many obstacles that arose daily. At home I slept constantly after work, I just couldn’t seem to get enough rest physically and mentally.

Finally something snapped, it was like an overloaded circuit shorting out. I tried to talk to co-workers, doctors (even psychiatrists), family and friends but all would often say, maybe not in the exact words, “Deal with it, it’s all in your head, you have a lot to be thankful for, keep working because what would you do with yourself. Retiring would be the worst thing you could do!” So I pushed my body, mind and psyc to the limit. I felt guilt that turned into clinical depression and severe social anxiety,  constantly feeling that tight feeling in my gut that just wouldn’t go away and at times would turn to panic.

Finally I came across Dr. Richard Bruno on the internet who is one of the top researchers (likely the only one left) of post-polio survivors. He understood EVERYTHING I was going through. He gave me a better understanding of myself. Everything my medical doctors, psychiatrists, friends and co-workers said didn’t matter anymore. I wasn’t being a whiner after all. What was happening to me (numerous symptoms, it is why it is called a “syndrome”) wasn’t all just in my head. Yesterday I was going through one of the worst anxiety attacks and depressions I have been through in a good while. Thanks to two post-polio support groups on the internet they came to my rescue. Virtually all stated they had the same problem with a feeling of an abandonment disorder. Possibly coming from our childhood of having to spend months in hospitals with our families miles and miles away. Can you imagine as a child being forced to be away from family?

I suppose I shouldn’t say this on the internet but it is part of who I am. I just told this to a friend last week but it seem to do me no good to talk about it. That day I had an unexpected flashback of when I was 12 and was going to have surgery on one of my feet. To this day I am scared to death of hospitals (most all medical facilities). While being prepped for surgery by an intern, I can now remember that what was done during that pre-surgery prep was child molestation but I was too young to know that, I only knew I felt really awful afterwards, couldn’t say anything to anyone and put it in a little corner of my brain all these years.

I have few friends because I have often pushed them away or been way too clingy. I love helping people but often that can go against me. I have one friend who has said more than once, “I can’t take much more of you.” and another say, “It is all up here.” pointing to their head.

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Posted by on January 20, 2015 in Anxiety, Mental, molestation, Polio

 

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Experience with Social Security Disability and Post-Polio Sequelua

Bubba at age 4

Bubba at age 4

As I sit here typing this post, I just awaken after a restless nights sleep. I haven’t worked since Wednesday, November 20th, 2013 which was a day that will be with me for the rest of my life. I had wanted to leave just as quietly as I had arrived but that wasn’t to be. Throughout the day I received emails from all over campus wishing me well. At one point I looked up from my desk and standing in my office door was the President and Vice President of the College along with a number of other people I had known for years. Against my wishes I was presented with a red brick with my full name and years of service engraved in black letters to be placed with others in the middle of the Campus. I was also presented a document of “resolution” in a gold frame listing my accomplishments with the College through my thirty-four years. People were in and out all day and I have to admit, I have never been so humbled in my life as I was on that day.

Now that it is over, I find myself withdrawing from people, occasionally having anxiety attacks, bouts of depression and always the question of “what happens next?” I never really thought my finances through before I actually retired. I’m sure it was complete denial but then again, I would like to think of it as “faith”….all would work out. God has looked after me everyday of my life and deep in my spirit I know he will get me through this next phase in my life.

Through the past week I have been trying to understand and apply for Social Security Disability. I never wanted that but if I am to maintain my independence I have no other alternative. The process has just started and I am more confused today as I was yesterday. I think the hardest part has been getting my Neurologist’s office cooperation. I’ve been trying to make his future paperwork for SSD as simple as possible but so far it feels like I have gotten no where other than getting an early appointment to sit down and talk with him on December 18th.  If I’m not careful the anxiety and depression will slam into me right out of no where. It happen to me yesterday but you know what……while sitting in my rocker with my dog on my lap…..my pastor begins walking towards us from my neighbors house. Instantly the anxiety and depression was gone!

Now as for the SSD process — I’m just waiting for a phone call from the Adjudicator regarding my application. To make the waiting even harder, I’m waiting for a phone call from my neurologist’s nurse to ask for a RX for certain blood work results I know my doctor will need for his SSD report. For some reason I am being ignored regarding that RX. Also I need to get an email address to send a template of the report he will need to complete attaching the Social Security Ruling/Policy for Post-Polio Sequelua. I understand Doctor’s are overwhelmed but yet, aren’t’ their patients needs also important? I’m at a loss to answering those questions and can only persist and hope my doctor will listen and follow through without much delay.

While working on my SSD application online, you are given a remark section allowing only 2000 characters. Dr. B. one of the foremost experts on Post-Polio Sequelua was a great help in making sure I did not stray from the subject of my claim. In his words and my words I ended the remarks in caps with: POLIO IS HORRIBLE! AFTER POLIO, DESPITE MY DISABILITY, I WORKED HARD THROUGH THE YEARS TO GAIN AND RETAIN MY INDEPENDENCE WITH ONGOING EDUCATION. I WORKED FULL-TIME FOR 34 YEARS. POST-POLIO HAS CUT ME DOWN BIT BY BIT. IT IS LIKE MY LIFE IS REVERTING BACKWARDS!

Always Be True To Yourself

Always Be True To Yourself

Listed below is a impression of ways President Franklin Delano Roosevelt had and is having an impact on my life:

RELIGION: Christianity has ALWAYS influenced the man who I am today. My faith in God, to me, is private and between God and I. He is and has been with me from day one and the three trinities IS my faith and has strengthened and saved my spirit throughout my life time. When I read these excerpts about FDR it helped me better understand the man he was, NOT as a President of the US but as a human being……

FDR

This morning when I awakened my first thoughts for some reason was of Franklin Delano Roosevelt. He and present day Dr. Richard Bruno are by far the two men who I respect beyond words and look up to for inspiration. As for FDR, my thought this morning, “Was FDR a religious man?” As I researched this on the internet, surprisingly the information was limited regarding this subject.  Here are excerpts I did find:

PBS – GOD IN AMERICA

Here are a few comments from the article that stood out for me:

“Despite his lack of church attendance, Roosevelt maintained a personal inner faith. According to Eleanor, he “had a strong religious feeling and his religion was a very personal one. I think he actually felt he could ask God for guidance and receive it. … He never talked about his religion or his beliefs and never seemed to have any intellectual difficulties about what he believed.” Although less inclined to publicly invoke religious imagery than some of his predecessors, Roosevelt did reference Christian concepts in many of his speeches. He mentioned God in all four of his inaugural addresses, asking for divine guidance through difficult times.”

“Roosevelt asserted the importance of the Bible in American history, declaring: “We cannot read the history of our rise and development as a nation, without reckoning with the place the Bible has occupied in shaping the advances of the Republic. Its teaching, as has been wisely suggested, is ploughed into the very heart of the race.”

“Our enemies are guided by brutal cynicism, by unholy contempt for the human race. We are inspired by a faith that goes back through all the years to the first chapter of the Book of Genesis: ‘God created man in his own image.’ We on our side are striving to be true to that divine heritage. We are fighting, as our fathers have fought, to uphold the doctrine that all men are equal in the sight of God.”

GEORGIA WARM SPRINGS FOUNDATION / MARCH OF DIMES:

Bubba with his mother in Warm Springs Hospital, Fall 1959.

Bubba with his mother in Warm Springs Hospital, Fall 1959.

At the age of 3 I was stricken with polio, infantile paralysis. I was sent directly to Georgia Warm Springs Foundation Hospital just over a hundred miles or so from my home of Elberton GA. I was there for 3 months and until I was 21 years of age all medical expenses (treatment, surgeries, adaptive devices, etc) were all paid for by the Warm Springs Foundation and the March of Dimes. The below excerpts came from:

HISTORY IN THE HEADLINES

“Franklin Roosevelt’s crusade to defeat polio actually began more than 10 years before he created the group that would become known as the March of Dimes. His first efforts centered on a therapeutic spa in Warm Springs, Georgia, famed for the recuperative benefits of its water treatments. Roosevelt first was treated at Warm Springs in 1924–three years after his own devastating bout with polio–and was immediately impressed with the results. He soon became a frequent visitor, and within three years he had bought the property and created the nonprofit Warm Springs Foundation, which established the springs as the first hospital in the nation to focus entirely on the treatment of polio victims. Roosevelt chose close friend and former law partner Basil O’Connor to run the organization; O’Connor went on to hold the role for more than 30 years.”

Georgia Warm Springs Hospital - Circa Unknown

Georgia Warm Springs Hospital – Circa Unknown

“On January 3, 1938, FDR and Basil O’Connor announced the creation of the National Foundation for Infantile Paralysis, or NFIP. O’Connor set about creating a national network of local chapters dedicated to raising money to combat the disease. However, it wasn’t until later that year that the NFIP became associated with the moniker most people know it by today, the March of Dimes.”

GROWING UP WITH POST-POLIO: As I grew up with post-polio my family treated me as an equal. I never once heard, “He is a cripple, he can’t do that.” But instead they allowed me to do whatever I felt I could do. You could say, I was developing what most polio survivors would call a “Type A” personality. NOTHING could slow me down. However, when I started school other kids would laugh at me and I often heard the word, “Cripple” and adults would look at me with pity. I was great at covering up my hurt and would often look at them all with a genuine smile of “it’s ok, I know who I am and I am ok with it.”

Bubba in 1982

Bubba in 1982

As I grew older I would often look down so as not to see the pity on others faces but still I was good at hiding my feelings and even more determined to push as hard as I could to prove to myself and others I wasn’t a “cripple” I could do just as much as anyone else. When it came to having my picture taken I did all I could to get out of it or if they insisted I would silently pray they would take the picture from my waist up. Here are excerpts from FDR’s reaction to his post-polio and picture taking from:

TIME LIST

FDR Walking In His Leg Braces

FDR Walking In His Leg Braces

“Few people ever called Franklin Roosevelt nuts. But when it came to the topic of  polio — at least his particular case of polio — nuts was what he was. That  turned out to be a very good thing. In 1937, Roosevelt stepped up the pressure on polio, creating the National  Foundation for Infantile Paralysis, a group that would gather some of the best  medical minds in the world with the goal of finally stopping the scourge. The  foundation would be funded entirely by donations — a dime at a time, if need be.

While Roosevelt was open about discussing his affliction, displaying it was  another matter. The White House was never at a loss for pictures of the  President standing, waving and looking well — his legs held rigid by braces, his  hand discreetly holding a railing or an aide’s arm — but forbade cameramen to  capture him in his wheelchair. The press, seduced by Roosevelt’s affability,  went along.

Warm Springs also provided Roosevelt with his rest. It was there — and only  there — that he would wheel about openly in his chair. And it was there that he  died on April 12, 1945. Another full decade — to the day — would pass before the  foundation he created would report that Dr. Jonas Salk’s experimental polio  vaccine worked. By 1961, polio was all but eradicated in the U.S. Forty summers  earlier, Roosevelt had taken his last unassisted steps. The children who came  later would be spared the pain the President suffered.”

POST-POLIO SEQUELAE: I learned the hard way that this is something that will sneak up on you and suddenly, BAM you have once again been slammed off your feet by polio!  On November 20th, 2013 I had no choice but to stop work after 34 years with working at my local College. I loved my job, I loved every employee and student on the campus, the challenges and just to be able to look at someone and give them a smile or a cheerful greeting when they seem to be at their lowest. To get back a smile or greeting in return, well that would make my day. I was no longer an asset to my employer but a liability and I could not have that. The symptoms of the PPS were only getting worse. Although I will get a small pension from the state it is far from being enough to keep my independence and maintain my quality of living so I am forced to apply for Social Security Disability. All of this seems to be ripping the spirit right out of me! Of coarse it has only been a week but I stay close to my phone hoping the Adjudicator will call from Social Security. I stay close to the phone hoping the Doctor I have chosen for confirmation of my disability to SS, that his nurse will call for me to pick up the RX for blood work needed to help back up my claim….I wait and I wait. Excerpts from:

THIS DAY IN HISTORY

FDR Signing Social Security Act

FDR Signing Social Security Act

“On August 14, 1935 President  Franklin D. Roosevelt signs into law the Social Security Act. Press photographers snapped pictures as FDR, flanked by ranking members of Congress, signed into law the historic act, which guaranteed an income for the unemployed and retirees. FDR commended Congress for what he considered to be a “patriotic” act.”

“Although Social Security Disability Insurance did not become law until July, 1956, a long period of discussion both in the executive agencies and in Congress preceded its passage. Planners in the Social Security Administration began their consideration of this measure in 1936.”

SOCIAL SECURITY POST-POLIO SEQUELAE POLICY INTERPRETATION RULING  Titles II and XVI:

International Centre for Polio Education

International Centre for Polio Education

I discovered the term, Post-Polio Sequelae from Dr. Richard Bruno‘s website International Centre for Polio Education a few years back. It was about that time I began to have physical, mental and psychological symptoms I could not explain and my doctors and the specialists I saw would shrug and couldn’t tell me what was happening. I emailed Dr. Bruno and from that day forward my self-education regarding post-polio began and after reading his book The Post-Polio Paradox, the pieces began to fall in place! I had begun to think most all my symptoms where just my imagination and I was becoming a hypochondriac! I really felt alone even though I did begin reading more about post-polio on other websites but they didn’t seem to help the way Dr. Bruno  and his book did. He was pretty much there for me when my symptoms began to escalate and he warned me it was time I took action to keep the symptoms from worsening. He helped to lead me to my conclusion that I had to choose, “My job or my health.” Of course as of November 20, 2013 I chose health, which included, independence. The below excerpts are from the Social Security website:

SOCIAL SECURITY RULING ON POST-POLIO SEQUELAE

“Individuals experiencing postpolio sequelae may complain of the new  onset of reduced physical and mental functional ability. Complaints of  fatigue, weakness, intolerance to cold, joint and muscle pain,  shortness of breath and sleep problems, mood changes, or decreased  attention and concentration capacity may hallmark the onset of  postpolio sequelae. Weakness, fatigue, or muscle and joint pain may  cause increasing problems in activities such as lifting, bending,  prolonged standing, walking, climbing stairs, using a wheelchair,  transferring from a wheelchair (e.g., from wheelchair to toilet),  sleeping, dressing, and any activity that requires repetition or  endurance. Changes in attention, cognition, or behavior may be  manifested by reduced capacity to concentrate on tasks, memory  deficits, mood changes, social withdrawal, or inappropriate behavior.

Many polio survivors who had been in a stable condition may begin  to require new or additional assistive devices, such as braces, canes,  crutches, walkers, wheelchairs, or pulmonary support. The reduced  ability to sustain customary activities, including work, may result. A  previously stable functional capacity may be further diminished.

Many individuals with medically severe polio residuals have worked  despite their limitations. The new onset of further physical or mental  impairments (even though they may appear to be relatively minor) in  polio survivors may result in further functional problems that can  limit or prevent their ability to continue work activity. Postpolio  sequelae may effectively alter the ability of these individuals to  continue functioning at the same level they maintained for years  following their initial polio infection.”

Thank you all for reading and I hope you’ll stop in a visit my website sometimes.

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Polio Survivors in the 21st Century

 
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Posted by on December 6, 2013 in Early Retirement, Polio, Uncategorized

 

My Feelings About Early Retirement & Being Blessed

Having Faith

Having Faith

As usual…..

 It has been awhile since my last post. I had hoped to maintain this blog on a regular basis, mainly as a journal of my current life dealing with my physical, mental and psychological post-polio symptoms. Then of course there is the natural aging process that we must all go through.Currently I continue to work in a job I love but can no longer put in 40 hours a week and have had to cut down to maximum of 30 hours a week by going on Family Medical Leave and using my accrued sick leave. I was able to get a prescription from my neurologist to allow me to work fewer hours. Unfortunately I’m still not sure he understands post-polio symptoms as few doctors do. As Dr. Bruno calls it, The Polio Paradox hits the nail right on the head. PPS is a contradiction in itself. It is frustrating to have to try and convince my doctors my symptoms are post-polio related. Now I am asking myself, “Why should I care?” I have gotten to the point I really don’t anymore.

         As for my decision to retire……a few months back I sat in a hospital room for two hours watching a co-worker die from breast cancer. She was in a coma on life support but I talked with her and prayed over her. I knew all was well when the Holy Spirit came over me. She had to take early retirement because it came down to my employer keeping me or her. They kept me on which allowed me to reach my 30 plus years as my co-worker had done. She never forgave me (but I think as a Christian she did, in her own way, I feel sure of it) even though it was out of my control. Her sister later told me it was the best thing that could have happen to her, she was given time to do volunteer work for her Church, spend more time with her family and most of all watch her only grand-daughter grow into a fine young lady. After leaving her hospital room, kissing her on the forehead and letting her know “it is ok to let go”  (two hours later the family took her off life support). As I drove away from the hospital, a thought came over me, “Bubba, it is time to stop working. You have to think of your health and maintaining your independence. Money is important to maintain my independence but my health is more important.” I went back to the office and the next day I typed my letter of intent to retire as of January 31, 2014. As the time approaches, I have mixed feelings.  Physically I grow weaker but try not to dwell on that, mentally I have become more forgetful and without rest have difficulty speaking and organizing my thoughts. For that reason I hate to talk on a phone because it can get a bit embarrassing. Psychologically, I feel I am withdrawing more and more from others but having faith and a belief in Jesus Christ along with great friends I will get through anything thrown my way!I feel strongly that all things happen for a reason and I am trying to convince myself, all will be well, I am making the right decision and God will get me through this……..he always has and always will.

   For anyone who has read my posts then you know about “Birdy”. She is doing great! That little dog can be dense at times but she is smart and entertaining. No one could ask for a better dog. She seldom barks, is full of life and energy, wants to stay at my side or at least in her eye sight and will pout (walking away slowly with her head held down) when I have to leave her for work or when it is bed time. It took awhile to dawn on me but I’ve learned to love her and she is a gift from God. There was a very good reason it was meant for me to rescue her from certain euthanization.I hope to post again soon as I think it helps to sometimes be able to put my thoughts into words. As I sit here and type, now and then I glance out of my window seeing the palm tree I planted a few years back, growing full and tall, the green grass, the live oaks with moss hanging from the limbs……I could go on forever. I think what I’m trying to say is that no matter what life throws at us, with Gods help we can get through anything and when I look out of my window I’m thankful for my life and all God has blessed me with.

For the one or two who might read this, take care and when you have tuff decisions to make, trust yourself, leave it in Gods hands and try not to look at the negatives in your life but instead, look at the positives (blessings). If you look beyond the trees, you will find just how blessed you are.

 
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Posted by on September 28, 2013 in Early Retirement, Mental, Pets, Polio, Quit Smoking

 

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