Jun 20 2012

Polio Perspecvtive

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Polio Perspective – May, 2019

Millie Malone Lill, Editor        Wilma Hood, Publisher

In This Issue


by Ken Allen

Procedure for Getting SSDI

by Dr. Richard L. Bruno 

Once More

by Millie Malone Lill 

Web Corner

Other Disability Related Newsletters 

A Little Bit of Humor



by Ken Allen

I was talking with another survivor recently after he had asked if I used braces due to polio. When the conversation informed me he had them for a while when growing up, he assumed I had had them since childhood. I explained my parents had taken me to a shop sometime after I was ill but apparently failed to follow their doctor’s request. He seemed somewhat irritated and told me I really did not know what it was like as the conversation ended and he left.

I did not know how to respond. I am fairly confident my parents, especially my Dad as he met with a man in a white coat, faced a tough decision. I was later told by Mom after we changed doctors, it was because, “The other doctor wanted something Daddy and I did not agree to do.” It was never explained to me.  I assume the process had been very traumatic for him. I was 3 years old but he never said how old he was when it happened to him. It made me feel kind of guilty for something beyond my comprehending ability.

My personal experience was about 10 years ago after a doctor had treated me for a foot injury while on the job after missing a step breaking a piece off my calcified Achilles Tendon. He prescribed the use of high-top orthopedic boots to enhance the support to help prevent further damage. He provided a yearly prescription each year for the next 8 years with out question. In 2009 when I made my yearly request, he wanted to see me in the office for evaluating the situation. He surprised me by telling me that my upward motion of my foot was causing me to land toe first on each stride. I had not realized it was happening but did explain why my tripping had increased. He ordered my first brace; a short leg one to assist in pulling my toes up. The appointment for the following year was also set.

My appointment with the shop was in a more modern facility than I had been in in 1955. There were a few chairs in a small waiting area. Dan introduced himself and gave a brief explanation as to what was ordered and what needed to be done that afternoon. He proceeded to trace the outline of my leg and take measurements of my lower leg. He presented examples of some boots which would be suitable instead of the ones I had used for the previous 9 years.

When the appointment came a couple of weeks later for the fitting, I really had no idea as to what to expect upon presentation. My biggest reaction I remember was my students at school were going to refer to me as Forest; that never happened for me to hear. It took me from mid September until late October for me to begin wearing it all day each day. My tripping became a seldom event.  I guess I became accustomed to its assistance and use without any trauma as my students asked logical factual respective questions and as a teacher, I answered their inquiries with the facts needed.

I did retire at the end of that year and kept the follow-up appointment in August. The shock came as I was told my left foot was replicating the same action as the right the previous year. Maybe this was the first sign of PPS but The doctor did not recognize it nor sought any answers to the causation.

The second brace was prescribed along with a new pair of boots. The appointment was set to see Dan again for the second. He did the same process as the year before and finally agreed to order the boots I had been using. His choice was never as comfortable as they were supposed to be. The second brace was presented without any special occasion. All was as well as could be expected with out further incidents.

But then in May of 2014, my left knee gave way sending me into the medical mixer. I went down and the tongue of the popup camper trailer landed on both knees with a resounding crack. I was able to get up and everything was moving in unison with lots of pain. My appointment with my family doctor found no obvious damage in the 3 X-rays taken but was referred to a different orthopedic doctor. This orthopedic doctor had many years of experience and the additional X-rays again showed no damage. But he questioned the need of my braces and had me walk across the room in socks and shorts. It was then he asked about my prior bout with polio as a child. My response was I did not know of any but remembered the PAINFUL stiff neck as a toddler. I also explained my memories of the trip to the brace shop and things my Mom had said about the braces I was supposed to have had earlier. He referred me to a neurologist for the testing needed to determine if I had had polio. His experience enabled him to recognize something the younger orthopedic doctor did not recognize.

The neurologist did an extensive interview which ended with a battery of tests ordered to eliminate other conditions. The testing did not find any anomalies and proceeded with the EMG test. The result were stated as the patterns seen are consistent with those seen in those with a known polio past. He also advised having my current bracing evaluated to determine if long braces would better suit my needs.

The evaluation determined I could be better served by limiting the hypertension of my knees and provide more lateral stability. I was traced and measured for a pair of long braces being told I would be contacted when they were ready for delivery.

About a month later, the call came to set the appointment. I was taken to a service room and instructed to be in shorts and socks I had been instructed to bring.  The room door swung open and I gasped as the braces were dangling from one hand as he closed the door. I remember the gasp as thinking there was no way I was ever going to be able to wear such things. I was seated in a chair as the first was put in place and then the second secured before being helped to stand. My initial response was the cutting pain at the front above and below both knees. He explained he did not think my knees would need the additional support of knee pads. He had on hand a set much too small for an adult but was able to agree knee support was indicated. With the pain on the front alleviated, it was determined the depth of the cuff below the knee was insufficient and needed to be replaced.

Another month passed when the call came again to come back for the second attempt. There was an intimidating feeling that this was it; my life was going to undergo a drastic change. Here I was as an adult with full capabilities of understanding and reasoning as to what and why this was happening. I don’t remember being upset or anxious but just kind of numb going through the experience. The fit seemed to be acceptable in his eyes and there was no noticeable pressure or pain this time as I teetered around the room during the trial steps.

Questions began to race through my mind as to what happens next. How is my family going to accept these things? What is going to be the reactions of friends? What am I going to be able to accept? I was assured it would take some time to become accustom to how I needed to accept their presence and others would just have to deal with it in their own ways. After some practice, it was time to set out on my own with instructions to go a couple of hours before taking them off.

I stopped at a store and was immediately met by a former teaching colleague. Of course he had the questions and I had to face my first session of what would not be my last of Q and A. Maybe that was a fortunate meeting before being home before my wife was home from work. I guess I was coming to terms for the first time with a new and different reality.

I guess I was somehow spared something which could have happened 59 years earlier. I cannot begin to understand what the fellow I was conversing and others had to experience at young age. I cannot begin to fathom how I would have reacted before being of an age of reasoning and understanding. I know I will not be able to understand the trauma he and others face.


Procedure for Getting SSDI

Read and print the Social Security Ruling (pdf) for Post-Polio Sequelae

by Dr. Richard L. Bruno
Chairperson, International Post-Polio Task Force
Director, The Post-Polio Institute
The International Centre for Post-Polio Education and Research

I had polio in 1952 and one leg has always been in a long leg brace. I am a computer analyst and now have severe fatigue. I fall asleep at my computer. But from what I read on the Internet, everyone who had polio gets denied for Social Security Disability, even when they hire a lawyer and appeal the denials. Either I will get fired or I just wont be able get out of bed and go to work. I have no choice but to keep working. >>

You do have a choice! It is not true that it is Social Security Administration (SSA) policy to deny Social Security Disability Income (SSDI) payments to polio survivors. In 1985 we wrote the document that allows polio survivors to get SSDI, called the POMS for Evaluation of the Late Effects of Poliomyelitis (24580.010). In 1987, we worked with Senator Bill Bradley to force SSA to release the POMS, which is when polio survivors started getting SSDI. What’s more, in March, 2002, the SSA Commissioner agreed to our request to convert the POMS into what is called a “Social Security Ruling” that binds adjudicators and administrative law judges decisions about disability for polio survivors. The Social Security Ruling, SSR 03-1p.; Titles II and XVI: Development and Evaluation of Disability Claims Involving Postpolio Sequelae, was released on July 2, 2003. SSA has also agreed to “retrain” SSA personnel to properly review polio survivors’ applications for SSDI.”The Ruling is more inclusive than the POMS and uses the term “Postpolio Sequelae” to describe all of the late-onset symptoms polio survivors experience, not only post-polio syndrome — new muscle weakness in those who had paralytic polio — but also ‘early advanced degenerative arthritis, sleep disorders, respiratory insufficiency, and a variety of mental disorders (having) an etiological link to either the acute polio infection or to chronic deficits resulting from the acute infection.” According to the Ruling “any one or a combination of these disorders…will constitute the presence of ‘postpolio sequelae’ and can be grounds for granting SSDI. 

For the first time sleep disorders, ‘problems with attention, reduced concentration capacity, inability to persist in tasks, or memory problems’ are recognized as causes of disability.

The Ruling also recognizes The Post-Polio Institute’s research on the psychological effects of polio and PPS, that “traumatic psychological experiences associated with acute polio infection are revived when polio survivors recognize the onset of further weakness and functional loss. Many polio survivors endured a life-threatening infection as young children. They may have spent extended periods away from their homes and families while hospitalized with paralysis or respiratory dysfunction, or while undergoing multiple orthopedic surgeries. Often they endured many months, or sometimes years, of hospitalization and rehabilitation. The psychological effect of perceiving the onset of further weakness, fatigue, respiratory dysfunction or joint pain, many years following the acute infection, can be significant,” and lead to disabling “anxiety and depression…mood changes and social withdrawal.” Any of these symptoms can be the cause of inability to work and grounds for granting SSDI.The Ruling also recognizes that “many individuals with medically severe polio residuals have worked despite their limitations.” The Ruling states that “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.'”

So, SSA can and does grant SSDI for polio survivors. What’s more not one of our patients has ever been denied SSDI. Why? It’s all in the details And you don’t need a lawyer to get SSDI:

1. Read and print the Social Security Ruling for Post-Polio Sequelae;

2. You can do the application on-line at SSA.gov. Or, ask the Social Security Administration office to mail you the SSDI application form (SSA-3368-BK). Tell the SSA office you can’t come in to pick up or fill out the forms because you “physically can’t” make the trip.


3. There is a phone interview before or just after you get the forms. This is not a big deal. SSA just wants to briefly hear why you think you’re disabled and collect general information. But get the name, phone number and address of the adjudicator working on your case, the head of that local SSA office and the head of the office where your case will be decided. You will be asking your Congresspeople to write to these individuals.

4. Before the phone interview and before you fill out the application form, make a list of work-related disabilities and symptoms. On one side of a piece of paper list the things you can’t do that are job-related (e.g., can’t stay awake at your desk, can’t focus attention, have to read the same paragraph over and over, can’t lift or stand or carry). Then, on the other side of the page list the SPECIFIC symptoms that prevent you from doing the job related activities. Use the wording in the Social Security Ruling (e.g., “I can’t focus attention because of severe fatigue; I can’t stand for more than 5 minutes because of left leg muscle weakness; I can’t walk for more than half a block because of loss of endurance”). Mention the number of time you have fallen and if falls have increased in the past year (Falls or “being unsafe” on your feet are required for Medicare to pay for PPS treatment. Medicare starts two years after you get SSDI). Mention times you almost fell asleep while driving. Be brief and clear in describing the symptoms and limitation. Remember: For every work-related problem, describe the symptom that disables you; for every symptom, tell what task it prevents you from doing.

5. Do illnesses, injuries or conditions” limit your ability to work? This is the only thing SSA wants to know. Avoid the kitchen sink approach. Don’t list everything that has ever happened to you, polio-related or not. Limit your answers to illnesses, injuries or conditions” that limit your ability to work. The Ruling says “old records are not required,” so you don’t have to have records of childhood surgeries or even hospitalizations for polio. Also, do not include records of illness or hospitalizations you have had as an adult unless you have another condition that also limits your ability to work. If you are not disabled from work by allergies, an ulcer, a hip replacement, high blood pressure, osteoporosis, successfully treated sleep apnea, a heart attack — even a heart transplant — DO NOT list those diagnoses, the medications you take for them, hospitals where you were treated, or the doctors you saw for them. Don’t even list blood tests or X-rays you’ve had unless they directly relate to the “illnesses, injuries or conditions” that limit your ability to work. SSA reviewers will sometimes look at the first doctor’s report — maybe a note from your GP of 5 years ago — that says “Had allergy shot. No other problems” and deny you SSDI for PPS because you have no disabling symptoms. If you have “illnesses, injuries or conditions” that do not limit your ability to work, SSA doesn’t need to know about them.

The more doctors and conditions and tests you list, the more likely it is that SSA will not even get all the reports, making the process take longer than it needs to. The best thing you can do is list only one doctor — your PPS doctor — who knows about PPS and will write clear reports about your inability to work due to specific PPS symptoms referring to the symptoms described in the Ruling. Your doctor need to read the Ruling before writing the report for SSA.

However, if you have PPS and then had a heart attack, and you now have limited stamina because of PPS and because your heart is not pumping enough blood, you have two conditions that together disable you from working. In this case, list your PPS doctor and your heart doctor. You can have several conditions that add together to cause a work disability. Also, it is important that each doctor write a report to SSA describing the your PPS symptoms and the impairments they cause. The report should also include the severity of any residual weakness, as well as the onset, pattern, and severity of any new physical or mental deficits. A description of current functional limitations and restrictions on physical and mental activity should be included.

6. List home-related limitations in the same way as work-related limitations, e.g., “I can no longer do laundry, shop, cook, yard work, because of fatigue and muscle weakness. Now my husband/wife/children have to do these jobs.” SSA wants to make sure you are limited on the job and at home.

7. Use the “In spite of…” argument. Mention assistive devices you use, especially new ones, and that you still can’t work “in spite of” using these devices, decreasing activity at home and getting reasonable accommodation at work (e.g., “In spite of getting a long leg brace that I was able to discard when I was 10 years old, using a wheelchair for the first time in my life, getting a stair-glide in my house, sleeping for 30 minutes at lunch, and leaving work early every day, my fatigue is still increasing and I fall asleep at my desk “).

8. Again, use symptoms described in the Ruling. If you work at a desk, brain fatigue will likely be the cause of your work disability. If you do physical work or type at a computer, physical fatigue, loss of endurance, or specific leg, arm, hand or muscle weakness may be the cause of your work disability. Stay away from mentioning any type of pain, especially back pain. It usually doesn’t help to mention joint or muscle pain even when it is caused by work-related duties or is associated with muscle weakness, because it is almost impossible to get SSDI due to pain. Also, never mention depression, anxiety or medications you take for them unless these symptoms prevent you from working. Depression is an automatic rejection unless you live in a mental hospital.

9. In the “Remarks” section at the end of the application, briefly summarize ALL OF your answers and describe your work disability as caused by your specific PPS symptoms, again linking each work limitation to a given symptom and using the wording in they Ruling. Also, mention long-standing polio “disabilities” that are not problems. SSA decides that you are work disabled based on your age (50 or older), levels of skill and schooling. If you load trucks and graduated from the 8th grade, SSA won’t expect you to go to college to get a “sedentary” career. But, if your are a college grad and have trouble walking, SSA will say you have the education and skills to do something that doesn’t require walking. Some people with severe fatigue, but who have always used a leg brace, have been denied SSDI because SSA said, ” Your leg has always been paralyzed and should not affect your working at a desk job.” You should say something like, “The fact that I have always used a long leg brace and that my arm has always been weak has nothing to do with my disabling post-polio fatigue today.”

10. The Ruling states that polio survivors’ description of symptoms and limitations to their own physicians and psychologists are the primary factors when it comes diagnosing PPS and inability to work. An EMG and functional capacity evaluation have been removed from the evaluation process for PPS. The Ruling also states that only in “select cases, where severity of the impairment is unclear, an examination by a physician or psychologist who is knowledgeable about polio and postpolio sequelae is appropriate, if such a specialist is available.” SSA can ask for what’s called a “Consultative Examination” if there is not enough information in you’re doctor’s reports to determine if you are work disabled. However, many polio survivors find SSA sending them for a consultative examination to a neurologist — or even a psychiatrist — who knows nothing about PPS. SSA policy states that your treating doctor is the “preferred source” for the consultative examination, unless your doctor’s records contain “conflicts or inconsistencies” or “prior experience indicates that the treating (doctor) is not a productive source of clear information” (cite SSA Regulations 404.1517 and 404.1519G). You have the right, and SSA regulations require, that your own doctor be consulted FIRST if there are unanswered questions or if a consultative examination is necessary.

11. You took the time to vote, so put that vote to use. SSA gets very careful when they know your Senators and Congressperson are watching over their shoulder. Send a letter like this and attach the Social Security Ruling:

Dear Senator/Congressperson:

I am a polio survivor of the 19XX epidemic. I have been working for XX years as a YOUR JOB but am now unable to work because of Post-Polio Sequelae (PPS).

Many polio survivors are being denied SSDI because SSA personnel do not know there has been a policy in place since 1987 — the POMS for the “The Late Effects of Poliomyelitis” (24580.01) — allowing polio survivors to receive disability benefits. SSA adjudicators wrongly use the listing for “Acute Anterior Poliomyelitis” (11.11) to determine eligibility for SSDI for those with Post-Polio Sequelae. Polio survivors are now disabled, not by polio paralysis or “motor disorganization, but most commonly by disabling fatigue due to Post-Polio Sequelae. To insure that SSA personnel no longer inappropriately deny polio survivors, a Social Security Ruling for Post-Polio Sequelae (Social Security Ruling, SSR 03-1p.; Titles II and XVI) was released by Commissioner Barnhart on July 2, 2003 (please see enclosed).

Would you please contact SSA ADJUDICATOR’S NAME and HEAD OF THE SSA OFFICE at the YOUR TOWN Social Security office, 555-555-5555, at THIS ADDRESS. Please ask them to consult the Social Security Ruling for Post-Polio Sequelae and make a decision about my disability based on the Ruling, SSA’s own procedures and guidelines, and on the actual cause of my not being able to work, LIST CAUSE(S).

Include copies of your letters to the Congressperson and the Social Security Ruling with your application. Call your adjudicator at the SSA office about once a month to see where things stand. It should take about 6 weeks from the time your doctor sends in the report for you to get your first check.

12. Since it’s the government mistakes do happen and you may get denied. If you are denied, read the reason for denial, which may be because of the adjudicator’s not having read or misreading the Social Security Ruling. Find out the specific reason for the denial. Then do two things. FIRST, ask for an On-the-Record Administrative Review of your denial to determine if the guidelines in the Social Security Ruling were followed and the latest policies about PPS were applied. Write your Senators and Congressperson and ask them to request an On-the-Record Administrative Review:

Dear Senator/Congressperson:

I am a polio survivor of the 19XX epidemic. I have been working for XX years as a YOUR JOB but am now unable to work because of Post-Polio Sequelae (PPS). But I have been denied SSDI. 

Many polio survivors are being denied SSDI because SSA personnel do not know there has been a policy in place since 1987 — the POMS for the “The Late Effects of Poliomyelitis” (24580.01) — allowing polio survivors to receive disability benefits. SSA adjudicators wrongly use the listing for “Acute Anterior Poliomyelitis” (11.11) to determine eligibility for SSDI for those with Post-Polio Sequelae. Polio survivors are now disabled, not by polio paralysis or “motor disorganization, but most commonly by disabling fatigue due to Post-Polio Sequelae. To insure that SSA personnel no longer inappropriately deny polio survivors, a Social Security Ruling for Post-Polio Sequelae (Social Security Ruling, SSR 03-1p.; Titles II and XVI) was released by Commissioner Barnhart on July 2, 2003 (please see enclosed).

Would you please contact the SSA ADJUDICATOR’S NAME and HEAD OF THE SSA OFFICE at the YOUR TOWN Social Security office, 555-555-5555, at THIS ADDRESS. As a Member of Congress you can ask for an Administrative Review of my denial to determine if the Social Security Ruling was followed. Please ask for an On-the-Record Administrative Review of my denial and ask Social Security to make a decision about my disability based on the Social Security Ruling, their own procedures and guidelines, and on the actual cause of my not being able to work, LIST CAUSE(S).

Send copies of your SSDI application, denial notice from SSA, the letters posted here from SSA and the Social Security Ruling to your Congressperson and Senators.

If you cannot get or are not successful with an On-the-Record Administrative Review appeal immediately. Discuss with your doctor the specific reason for the denial and asking him/her to also write a letter to SSA. You have a right to two local appeals and then a hearing before an Administrative Law Judge (ALJ). The ALJ’s ruling can be appealed as well. If you follow this procedure, you won’t need a lawyer even for the appeal. About 90% of the cases that come before the ALJs have their denials overturned, so there is a xxxrwlight at the end of even that tunnel.

But, if you are denied at any stage you can choose to file a NEW application for SSDI if you have new medical information or functional limitations. It will be as if the first application and denial(s) didn’t happen. However you just have to find out your “last insured date.” SSA only goes back 17 months from the filing date to establish the onset of disability and retroactive benefits. The money you get is based on the past 17 month of earnings. So if you file a new application and have been out of work for a while you will get less in SSDI benefits.

Applying for SSDI can be a kind of “game” that you can win if you follow the rules!


Once More

by Millie Malone Lill

 Some of you are no doubt tired of hearing this from me, but then again, some of my newer readers may not have heard it that much.  OK, here goes:  WHAT OTHER PEOPLE THINK OF YOU IS NONE OF YOUR BUSINESS!! There, I’ve said it again.

I talk to lots of polio survivors on a daily basis, belong to several online groups and one local (sort of, 65 miles away) polio support group.  If I had a nickel for every time I hear, “But what will people think if they see me with a cane/walker/crutches/wheelchair?” I could afford to drive my van to each of your houses and rant at you in person.  I have not received those nickels, which might be a good thing from your point of view.

First of all, your neighbors or other people are not thinking about you.  They are more than likely thinking about what they are going to fix for supper, how long their water heater/air conditioner/whatever will last before having to be replaced or what their kids are up to now.  They may glance your way and see you there with your assistive device, but unless they are close friends or maybe just snoopy, they are unlikely to pay any attention to you at all.  Unless your assistive equipment is a service dog, in which case I would come and talk to you about it because I love dogs, but I digress. 

Suppose they are close friends of yours.  Most likely they will ask what happened or why you are now using the cane/walker/wheelchair/whatever.  This would be, hopefully, through friendly concern.  If you think they want to hear it, you can give them the Polio in Under 2 Minutes talk, but you can tell when their eyes start to get glassy.  So, in that case, just say “My disability warrants it now.”  Short and sweet, just like me.

If, however, they are mean people who would make fun of your disability and the way you handle it, why do you give a fig about what they think?  They are not going to be your friends with an attitude like that. Ignore them if you can.  I usually handle it by ranting to my friends about it later.  You do what you feel is best for you.  And let’s not get the police involved, OK?

I choose to think that most people are decent.  In that case, if they notice you at all, they are likely to think “That’s great!  I am glad they are taking care of their needs and not falling down.”  They may even say something like this to you.  The proper response is a polite smile and a Thank You.

Any other remarks can be ignored, because…see first paragraph…WHAT OTHER PEOPLE THINK OF YOU IS NONE OF YOUR BUSINESS.

Take care of yourself and Conserve to Preserve.  Millie out.



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Russ Buttacovoli, an 80-year-old Italian goes to the doctor for a check-up. The doctor is amazed at what good shape the guy is in and asks, ‘how do You stay in such great physical condition?
I’m Italian and I am a golfer,’ says Russ, ‘and that’s why I’m in such good shape. I’m up well before daylight and out golfing up and down the fairways. I have a glass of vino, and all is well.

“‘Well’ says the doctor, ‘I’m sure that helps, but there’s got to be more to it. How old was your Father when he died?

“Who said he was dead?”

The doctor is amazed. ‘You mean you’re 80 years old and your Father’s still alive. How old is he?’

‘He’s 100 years old,’ says Russ. ‘In fact he golfed with me this morning, and then we went to the topless beach for a walk and had a little vino and that’s why he’s still alive. He’s Italian and he’s a golfer, too.’

‘Well,’ the doctor says, ‘that’s great, but I’m sure there’s more to it than that. How about your Father’s Father? How old was he when he died?’

‘Who said my Nonno’s dead?’

Stunned, the doctor asks, ‘you mean you’re 80 years old and your grandfather’s still living! Incredible, how old is he?’

‘He’s 118 years old,’ says the Old Italian golfer.

The doctor is getting frustrated at this point.
‘So, I guess he went golfing with you this morning too?’

‘No, Nonno couldn’t go this morning because he’s getting married today.’

At this point the doctor is close to losing it. ‘Getting married? Why would a 118 year- old guy want to get married?’

‘Who said he wanted to?











6 Responses to “Polio Perspecvtive”

  1. Thomas Christian says:

    Ole better git a hearing ade?

  2. 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.

  3. 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 to Thomas Christian