I’m two years into recovery from a stroke and I miss the treadmill that I used in the hospital. I had Physical Therapy while I was in the hospital for a month but no more since. Should I buy one or wait longer? And how long? I still have deficits in walking and sitting.
Missing the Treadmill
Yikes! No physical therapy in almost two years? Leave it to the expert for what you are able and not able to do. By expert, I mean a Physical Therapist–at home or as an outpatient—to do an evaluation first before you buy one. Maybe you will eventually be able to do the treadmill, or maybe you can use one now, but first things first!
After the evaluation, tell the Physical Therapist of your longing to do the treadmill, and the PT will reply honestly. Going without physical therapy for almost two years and then buying the treadmill and using it is an unacceptable idea without the evaluation.
I am 2.6 years post stroke and no day is the same. There are many challenges and situations that arise, so I would like to explore all situations here. Survivors, what do you think?
Perplexed in South Africa
I’m so glad you asked that question because no day is the same. It changes for me, too, 11 years later! Sometimes, I urinate in the morning three times in a row as a result from my stroke for urinary retention. In the 11th year, the stomach pains were finding me doubled over. It turns out, after many tests, that GERD (Gastroesophageal Reflux Disease) from too much acidity had spiked suddenly, so I changed my diet and I am well now. Yes, every day is a new adventure with stroke and, if you get a handle on the reasons, you will come to accept it as the new normal.
A Strokefocus member, Eugene Sekiguchi, adds, “My stroke was in January of 2011. The treatments available now seem to be more numerous than then and a bit confusing. So I think of that. Occasionally, I wish that I had the stroke at a different time. But now is now. The daily challenges of each day are quite different from day to day. I think that hourly or even changes by the minute are baffling, but they all seem to pass.
“My long term goals are to erase ignorance about (normal) aging and put into context strokes, TBI, and other brain injuries. Along the way, prevention, what to do and when to do it are questions that will be answered as time passes.”
From time to time, I become emotional and feel like crying or am impatient after my stroke, which causes a lot of stress. Will those feelings go away?
Remember that crying, impatience, and stress are typical early on. My stroke is 11 years old, and for the first 2 years, I had those same emotions. They’re part of the grieving process that we all go through as stroke survivors, and will become less and less in time.
Establishing a one-on-one relationship, preferably with another stroke survivor who’s not “new” to the game, could be beneficial. Keep in mind that stroke survivors just can’t be rushed into a support group setting because someone else thinks it would be a good idea.
When discussing your question, another stroke survivor in the Northwest Brain Network said that it helped him to focus on things he gained before stroke–such as job experience or hobbies, rather than the challenges after stroke.
Just the fact that you are aware of those feelings points to success!
I lost my will to live after my stroke when I was kept inside for 3 months except when my home health PT took me for a walk outside. I learned I cannot stay sane if all I do is stare at the outside world through a window. I was imprinted on the natural world as a child because we did not have a TV until I was a teenager and the Internet had not been invented yet. As soon as I got home from school I went ouside to play. If only two children were available to play baseball, we invented rules for imaginary players on base. If I was alone I played hopscotch, practiced throwing a basketball at the hoop, or rode my bike. As an adult I went camping with friends, jogged outdoors in all seasons, tended a vegetable garden, and took vacations in national parks. My most vivid vacation memory is riding a mule down into the Grand Canyon.
This hot, humid summer meant I lost the opportunity to walk around my neighborhood, sit on my patio to watch the clouds rolling out to sea, and feel a cool breeze on my face at the lake in Mercer County Park. At sunset I missed watching pairs of birds racing each other down the middle my street at car height or playing “I can push you off the telephone wire if I land one inch from where you are sitting.” I realized how deep my depression is when my friend Janet talked about a book that describes about how we developed a relationship with nature for the first tens of thousands of years of human evolution. The book is called The Moth Snowstorm by Michael McCarthy.
Michael reminded me that nature can both stun and gradually soothe me until I fall silent. I do not mean I just stop talking. I mean nature can stop the constant chatter I create in my head but forget is there because it is so constant. Covid has turned a lot of my internal chatter into catastrophic thinking which is depressing. I need to find ways to get nature back in my life because I know it has a powerful effect on me. homeafterastroke.blogspot.com
I like to browse the Internet to see what’s new. I could spend two hours on a slow day just looking around. But then I’m done for the day. But scammers, those people trying to get your personal information, live on the Internet. The scammers come up with all the ways to make you and your money part. After all, they are greedy and live out their motto: It’s never enough.
Those people who are the scammers’ victims aren’t stupid. They’re naive, babes in the woods so to speak, about how powerful the Internet is in conniving schemes that we call scams. The victims of the scams come in all ages and genders, but they usually target the over 50 crowd because they might not be so knowledgeable with the vast powers of the Internet.
In the era of the pandemic, scams have soared because many people only go out for essentials and are working (if they haven’t lost the job) from home.
Here’s 5 scams that come to mind.
Online Dating Scams
Like most people who are caught in this giant net, most scammers are overseas, so prosecution gets to be an ugly and costly mess. Male scammers are often based in West Africa, while the female scammers are mostly from the eastern parts of Europe, research tells me.
A study recently said that people in America lost $143 million in 2018 paid by them for love that never happened. The scammers string people along, sometimes years, with broken promises that seemed real, of one sort or another. “My brother just died and I can’t meet you this month,” or “I have COVID-19,” giving an unsuspecting victim the idea that this is really not a good time.
This from England: “There are millions of singles online in the UK, seeking what we all look for: love, companionship and a long-term future. I met my gorgeous husband through online dating, and during the ten years I worked for Match.com, we successfully paired-up over 160 singles every day.” [Maybe she took that job because after “millions of singles,” she would come up–eventually–for the right mate for her.]
But this, too: “The losses can be huge—financially, and emotionally. The average scam victim loses £10,000, but the mental scars can last a lifetime. As “Nancy”, a 47-year-old single Mum from Yorkshire, who lost over £300,000 to an online-dating scam, told the BBC: ‘Somebody’s got inside your head, and they’ve just brutalised you emotionally. In some ways, I’m not sure I’ll ever recover’. Most online-dating scammers live and operate abroad, so they are hard to prosecute”.
Look at the grammar. If it’s a scam from people “overseas,” non-native speaker of English, given that they’re not blown away by the person’s model-like looks, often use the language incorrectly with possible spelling mistakes, overuse of capital letters, and incorrect sentence order.
Online-dating scammers will charm the pants off of you (a rather crude pun, but it’s true). They’ll flatter you without knowing you and some people [is it you, for example?] get all hot and bothered about it, ready to take the plunge.
But here’s the thing! If they ask you for money, delete them forever from your Trash bin.
Job Offer Scams
Posturing as recruiters, these scammers use fake though
irresistible job opportunities to entice people.
It might begin with a text, an email, or a brazen phone call from someone claiming to be a recruiter from a well-known company like Google or Facebook who saw your resume and claiming they are interested in you for hire.
Don’t fall into this trap because in the end, you’ll have to pay to get hired, and when you go to the job on your first day, you weren’t hired at all. Call a real recruiters and learn for yourself that the process doesn’t work this way.
All recruiters have established a relationship with one big company or a ton of companies because if they find a person that’s suitable for hire, the recruiters get paid a commission. That’s how it works. The phony recruiter will probably ask you for money that will be automatically deducted from your account, and you might give it, but remember: The employers pay recruiters, not you.
Travel scams usually start with an email, offering you and fantastic stay in a fabulous, sometimes exotic, spot for typically 5 to 7 days. It might come with an expiration date that’s soon, so you would rush to make a decision. Scammers don’t want you to think about this ideal vacation too much because thinking too much brings about thoughts that it may be a scam!
The problems with these scams are threefold:
1. You might have to sit for a multi-day lecture about timeshares and deal with the pressure experienced salesmen put on you.
2. You might be paying for just the room when you’re told on arrival that you have to pay additionally for “extras.”
3. You might end up in a bad part of the city where you have overpaid for the room and where you won’t out venture at night.
Usually, you have to pay upfront or put down a hefty deposit that is non-refundable. You never know what life is going to throw your way so decline the offer.
Tech Support Online Scams
According to a Washington Post, “Nearly half of all cellphone calls next year will come from scammers,” so we need to protect ourselves from vile actions.
Scammers use various social engineering techniques to fool likely victims into giving their personal information. Sometimes, they try to persuade victims into paying for protection that never comes.
These technical geniuses, if you have given them any information, throw around high-tech buzzwords that offers trust and confidence in the unsuspecting victim, so much so they can take over your computer and transfer money to their bank account if you give them your i.d. and password.
DON’T GIVE ANYBODY YOUR I.D. AND PASSWORD. PERIOD!
Online Shopping or Auctions Scams
We are not talking about big name companies like Amazon, IKEA, or Wayfair from which I have purchased items with quality customer service departments.
I’m talking about a scammer who will set up a website just to steal money and sell a product, and offer you an inferior item in its place or, at times, nothing at all. They may also sell a product just to get your credit card or bank account details.
An online auction scam revolves around a scammer saying that you have a second chance to buy something on which you bid because the winner has changed his or her mind. The scammer will request for payment outside of the auction site’s tight payment location. If you give them your money, it will be lost and the actual auction site is not responsible.
From phrases.org re: too good to be true:
“This cautious view is undoubtedly even older than its first expression in English, in the sixteenth century. Nevertheless, it has been repeated in the same form ever since, with only slight variations as Mark Twain’s, “It’s too good for true, honey, it’s too good for true” (Huckleberry Finn, 1884).
So ask yourself, “Is the offer too good to be true?” first, and therein you’ll find the answer.
When I started to research oral care–brushing and flossing–for stroke, I found advice all over the world. But first a little background on how I was reacting to oral care when I had the stroke and even after, until I read the literature on mouth hygiene.
I didn’t think oral care mattered, and because I was so f’ed up from the stroke, I tended not to brush my teeth and floss if fatigue had already set in. It happened 11 years ago, random times, at least twice a month, until this research began to sink in. Now I think different and so might you, in post-stroke care and even in pre-stroke care of, as the Urban Dictionary says, that pie hole!
In the U.S., a Finnish-inspired study published by the Journal of the American Heart Association found that bacteria commonly seen in parts of the mouth migrated to the brains of people who had an ischemic stroke between 2013 and 2017.
With an ischemic stroke, caused by a blockage in a blood vessel in the brain, 59 people in the study had streptococci normally found in the mouth that can inspire infections in the bloodstream.
The research professor in the Department of Oral Medicine at Carolinas Medical Center in Charlotte, North Carolina, Dr. Peter B. Lockhart, said, “We now know that bacteria exist throughout the body, including in the blood,” [previously thought to be sterile].
In the reverse, Web MD says, in an article by Karen Pallarito, says, “Adults with gum disease may be twice as likely as people with healthy gums to suffer a stroke.” I was stunned.
In a recent study, it was 1.9 times, 2.1 times and 2.2 times higher for people with mild, moderate and severe gum disease, respectively. The conclusion? People who neglect their teeth are also less likely to go to the doctor for any type of medical risk. They simply don’t want to know.
In the European Stroke Journal, there appears to be an association between poor oral hygiene and increased risk of aspiration pneumonia – a leading cause of mortality post-stroke.
“Oral care tends to be of poor quality and delegated to the least qualified members of the caring team. Nursing staff often work in a pressured environment where other aspects of clinical care take priority.” From a social perspective, with bad breath, one is more likely to be overlooked.
In the European Union, the cost of dental care is expected to go up significantly. So people would be more likely to skip the dentist’s office, especially for older people with a fixed income.
For example, in the UK stroke is the third most common cause of death and ranks #1 in people with severe disability. Stroke costs the National Health Service (NHS) as well as the economy 7 billion a year. So we’re talking a lot of people.
In a recent study, the UK found these patients who often experience depression, anxiety, and fatigue to be less compliant with oral hygiene needs. Stroke, the study went on to say, sometimes results in confusion and the inability to recognise a toothbrush or floss in the early months.
The National Clinical Guidelines for Stroke in Australia emphasize the need for mouth hygiene following a stroke and the need for staff to be cognizant of the fact. Managing oral health post stroke is necessary, the guidelines go on to say, “and there is a need for an appropriate integrated oral care service in Australia.”
In Japan, a recent study found that tooth loss was related to stroke including not only ischemic but also hemorrhagic ones as well.
“It may be concluded that the association between stroke and tooth loss can be explained by common stroke risk factors associated with lifestyle such as hypertension, diabetes, smoking and alcohol intake.”
In addition, the key issue addressed in this study is determining whether dental treatment for tooth loss can be associated in preventing a second and more recurrent strokes. The jury is still out on that one. But with fewer teeth and ignoring dental visits, my mind is made up. What else can it be!
To conclude, watch this video to know my opinion! It might have been created before you were born! The 50s jingle goes like this:
When I visited Scotland people were wearing t-shirts and shorts when it was 68 degrees F because they thought it was hot. For the 1st time I understood why I sweat when it hits 70 degrees. My Norwegian ancesters who emmigrated to northern Scotland gave me muscular calves and thighs you would see on a soccer player. Big muscles create heat. I am a polar bear living with the gazelles in New Jersey.
After my stroke I did not go to a gym because it has machines that require 2 good arms or 2 good legs. Doing half of a yoga posture while sitting felt stupid and reinforced the asymmetrical strength my stroke created. I freak out about walking barefoot without my leg brace on slippery ceramic tile at a pool. I also do not want to learn how to put on and take off a swimsuit one-handed. So for
16 years I have exercised by pushing a shopping cart through large stores 2 to 3 times a week.
I would buy only $20 of merchandise so I had to make many returns trips. Now stores may have covid-19 virus in the air and on surfaces.
I switched to walking around my neighborhood while the weather was mild, but now the summer heat is here. I have to walk in the early morning when it is cool. The catch is that I have never been a morning person. All I can do is grunt if a person talks to me during the 1st hour I am up.
I felt groggy and sluggish so I decided to drink 16 ounces of water before I walked. Surprisingly it helped. I wore my pedometer and was pleased to see a high number. I do not know what I will do when snow covers the street, but I will worry about that later. homeafterstroke.blogspot.com
The last perspectives in medicine was about sudden changes. This post is on more insidious changes and the diagnostic challenge.
There is an interesting challenge that I notice in clinical medicine. It is a situation when someone’s health is not quite right but the diagnostic test and the clinical condition has not yet materialized to allow the physician to make a diagnosis. There is certainly a sweet spot in timing of the diagnosis: long enough to discern one cause from another and confirm it; not too long that a person is left with discomfort or a health risk.
In the inpatient setting, a patient may come in with a nonspecific series of complaints: fatigue, chills, jaundice. There may be nonspecific test results: elevated liver tests, a low white blood cell count, low platelets and a high bilirubin. This very circumstance happened in a patient that I evaluated. This series of findings is described as a mononucleosis syndrome. The challenge is that there are many things, infectious, rheumatologic, and neoplastic, that can cause these findings besides Epstein Barr Virus (EBV), the virus that causes “mono”.
The patient developed the symptoms over a period of three weeks. She noticed jaundice and increased fatigue. She had no flu-like symptoms, sore throat, lymph node swelling, or sick contacts. A battery of infectious diseases tests were performed, but none of them singled out one process. She may have had a positive antibody for EBV, but so does 80% of the population. The EBV DNA Polymerase chain reaction test (PCR), a marker of active infection, did not detect any copies. A CT scan showed an enlarged liver and spleen. Over a period of several days, she improved to the point that she was able to be discharged – without a diagnosis.
We discussed the next steps, which included a liver biopsy. The pathology of the liver sample suggested a process that is a result of many possible causes. It suggested a rare finding known as hemophagocytic lymphohistiocytosis (HLH), which is caused by autoimmune, neoplastic, or infectious causes. No telling findings otherwise were seen. Fortunately, she was feeling better.
We had a discussion about the results. I brought up strategy to address diagnostic challenges.
In medicine, seldom is a condition diagnosed on the spot. An astute physician can evoke a diagnosis like they are conjuring up magic. One of my mentors in infectious diseases, while rounding with us on a particularly vexing patient, walked in the room, looked at the patient face and skin (he had some ulcers on his lips and a generalized rash), and almost immediately said “he has Mycoplasma. And that is what he had. All other tests were negative, but he had the typical X-ray finding of Mycoplasma, a cause of “walking pneumonia,” and all his tests HIV, syphilis, etc were otherwise negative. We were spellbound, as we reviewed about this less common presentation of Mycoplasma.
A disease process sometimes takes time to present, time to grow and enable a safe way to diagnose it. Some diseases can be diagnosed fairly reliably by looking at the skin, our bodies largest organ. In fact, there is an app for that. The skin houses a network of vessels that mirror what is going on the in the entire body. Occasionally, systemic diseases can present with skin findings, that facilitate a less invasive way of making a diagnosis. This includes conditions such as sarcoidosis, T-cell lymphoma, malignant melanoma, metastatic squamous cell carcinoma of the lung, and lupus vasculitis.
When the disease is confined to the deeper vessels and lymphatic system, often there will be nonspecific changes in the GI tract. The tests may be nonspecific, such as elevated liver enzymes, white blood cell changes, and anemia. Since there are a multitude of infections that can present similarly, a shot-gun approach isn’t always high-yield or cost-effective. The radiologic imaging may also be nonspecific, such as a large liver and spleen, and mildly enlarged lymph nodes. At that point, the next step becomes a decision between watchful waiting or more aggressive, invasive testing.
The imaging and tests can only hint at the possibilities. Sometimes, there is a need of tissue, and sometimes there is a need to treat while not being completely sure. It reminds me of a patient that I saw from Africa who presented in the US with peritoneal fluid, lymph nodes, and thickening changes of the peritoneal lining. These changes usually occur when there is inflammation. The pathology report of the peritoneal biopsy was that of non-caseating granulomas, a feature of sarcoidosis but certainly not exclusive to it. She was from a part of Africa, where an article was published on cases of sarcoidosis.
It was also a high prevalence country for tuberculosis, which can present as non-caseating granulomas (though are more known for caseating changes). Her blood test (quantiferon) was positive for tuberculosis, but it wasn’t clear if it was latent infection (and had sarcoidosis) or if this was peritoneal tuberculosis. I saw her in the hospital; a different one from where she was being seen. She just had a biopsy there. I called the pathologist told him that I found it worrisome for tuberculosis. He looked at the smears before (tuberculosis stains with acid fast stain) and did not find anything. My call was enough to get him to go back and look. He called me a few hours later saying that he found “one acid fast bacillus.” We started her on four drug tuberculosis and after about one week, she had already felt better. None of the cultures ever grew; none of the genetic tests were ever positive. Yet, she had peritoneal tuberculosis.
Although ultimately it goes back to the service that physicians provide to the patient, a vague but concerning presentation can get a physician concerned about whether something is missing, and even if he or she is skilled enough. Hovering around is a concern of malpractice. As many as 39% of medical malpractice lawsuits come from failure to make a diagnosis, missed diagnosis, or delay. There is a point when the nonspecific, mild symptoms start to escalate to more specific, acute symptoms. Ideally, the time to diagnose a disease is before it can cause a threat on health.
Fortunately, there are some important aspects to addressing a challenging diagnosis, for patient and doctor alike. I approached the patient with the diagnostic dilemma with these points in mind:
Go back to the History and Physical Exam
This is one of the physician’s most important tool. Whenever I get into a situation of a diagnostic challenge, I go back to the patient and really listen to his/her words and determine the development of symptoms. A dying art in the era of advanced medical technology, a good history can still assist greatly in making a diagnosis; from some estimates, 70-90% of the time.
A follow-up physical examination while reviewing the history is critical. I often find that the best exam includes a second visit. It gives clarity on the history: the patient may have had a chance to think about the symptoms or questions more; the exam may have been changed or a physician may have missed something on the prior exam. There was a time that after a fourth genital exam, in my stubborn fashion, I found the source of the patient’s fever – a penile abscess.
It is important to keep the channels open and to feel comfortable to discuss any questions or concerns. I like to reassure the patient that I will continue to search for a the person can contact me and inform me of their health. We can keep visits at closer intervals to review progress.
Go toward the place where there is the greatest change
A blood test can sometimes show changes, for instance in the white blood count or the liver tests. A patient may have localizing symptoms, for instance, localized abdominal pain. If there is a concern, an imaging test may be ordered, such as a CT scan. Where an abnormality is encountered is the place that a more invasive test can be used to assist in the diagnosis. This often requires a scope or interventional radiology to take a sample.
Watchful waiting requires diligence
If a person is not suffering from severe symptoms, they may be safe enough to monitor over time. This requires careful planning and setting goals. This could be ensuring that the patient is seen frequently or receives additional testing, such as an imaging study or diagnostic test, in a timely fashion.In the infectious diseases clinic, I once diagnosed a patient with atrial fibrillation, but needed to confirm it on an ECG, which we didn’t have. I sent him to the cardiovascular lab; it was closed. He wasn’t able to get the test for one week, which confirmed the clinical exam. Was that too long to wait? Maybe.
Consider collaborative discussions and second opinions
Occasionally bias can obfuscate the ability to draw objective conclusions. There are always going to be knowledge gaps, as well. I used to think that being a specialist would have a more confined and manageable knowledge foundation than a generalist. I though wrong. It is just as complex and ever-changing.
It’s common that a patient’s information is discussed by multiple providers involved. In fact, it is a disservice to not have this collaboration otherwise. It isn’t unusual and sometimes helpful to walk down to the radiology reading rooms, review slides in microbiology or the biopsies with a pathologist, or to scrub in on a surgery. These perspectives enhance care.
I discuss cases with other infectious diseases specialist as well, if I can’t find a satisfactory answer from my knowledge base or from a brief literature review. Sometimes, one can be treated while closely watching and considering other causes. Other times, it is necessary to wait until a definitive diagnosis is made. It all depends on the acuity.