The Pusher Syndrome--Do you know what that is? Everybody should!

I found out about pusher syndrome last week for the first time ever from my Physical Therapist in Rehab because I fell once again.

I am a stroke survivors of almost 15 years and have pusher syndrome, the peculiar behavior of my actively pushing away from the non-hemiparetic [the good] side, leading to postural disproportion and the likelihood of falling towards the paralyzed side. 

Recent studies have found that the deficit leading to "pushing" is an altered perception of the body's positioning in relation to gravity. Let me explain.

Pusher survivors experience their body as upright when they are actually tilted to the non-hemiparetic side. The results demonstrate a separate pathway in humans with stroke for sensing gravity different from that for perception of the visual world. 

https://youtu.be/LjGhYWOmRUw

The clinical examination of this pushing, its underlying disturbance, lesion location, and approaches for therapy are all factors requiring more research.

Having a mirror helps me align myself upright. And "normals," if you see a stroke survivor who are family or friends tilted to the bad side, say something. They should appreciate that kind correction.

How Healthy Lifestyle Changes Can Help You Cope During Times of Grief

 

Claire Wentz created Caring From Afar to offer support and advice to people who are unable to live near their loved ones. She chooses the most poignant topics and, for this reason, is my guest blogger for today.

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One of the most common side effects of a death in the family–or even severe changes to the well-being of a loved one or yourself–is intense feelings of sadness and grief. It’s normal to feel this way, but there are ways to cope with these feelings that can help you feel better and get back on your feet. If you’re looking to understand more about how a healthy lifestyle can help you heal as you grieve, the following article from The Tales of a Stroke Patient can help.

Yoga and Grief

Yoga offers so many benefits that directly tie into overcoming grief. This may not be the first thing that comes to mind when you think of yoga, but it is a way to find relief. If you are grieving, Australian Natural Health notes that yoga will help you feel better by releasing endorphins and serotonin in your body. 

These will make you feel more relaxed and less stressed. Yoga also has breathing techniques that can help clear your mind and relieve any pent-up emotions. Yoga movements and poses are often done on the ground, which makes it easier for those who have never tried this form of exercise. 

Moreover, yoga helps with grief because it allows people to focus on themselves, meditate, and let go of their thoughts without feeling pressured. It’s all about finding comfort and peace in an otherwise difficult time. You are sure to appreciate the positive effects of yoga in your life.

Seek Professional Counseling

It is common for grief to extend for a significant period of time, but grief that becomes debilitating may need to be addressed through counseling. Fortunately, therapy is more accessible now than ever with the advent of telehealth counseling. When exploring the cost of therapy, look for telehealth opportunities that take your insurance, but know that even if you’re uninsured, you can find ongoing weekly appointments available for as low as $149 per session, with single sessions available for only $169. Online therapy is highly convenient, offers significant time savings, and if the need for medication arises, you can be referred to a board-certified physician for a prescription. 

Brighten Your Living Space

Did you know that a dark house can only make your sadness worse? You can boost your mood by inviting more light into your home. Take it a step further by turning on the lights at night to brighten your surroundings.

This will improve your mood and lift your spirits. A bright, cheerful environment does wonders for the soul, so be sure to take advantage of light’s many benefits during times of grief and sadness.

Start Your Own Business

Many people find that owning a business brings them joy and helps them overcome their depression. As a business owner, you are in control and don’t have to worry about dealing with someone telling you what to do.

Owning a business such as an LLC gives you greater flexibility and reduces your paperwork responsibilities. Please be aware that each state has its own laws about LLCs, so you will need to research your state’s laws in order to ensure compliance.

Eat Healthy Foods

As Harvard Medical School points out, a healthy diet is a key to feeling better—both physically and mentally. Take steps to ensure that you are getting your daily recommended intake of nutrients. You will benefit from higher energy levels, sharper cognitive function, and an improved mood. Furthermore, you should seriously consider cutting out sugar and other unhealthy additives that only serve to make you feel worse in the long run.

Losing a loved one–or even the sharp decline of a loved one, possibly even yourself–is always difficult, and everyone has their own ways of working through the grieving process. These revitalizing healthy lifestyle changes can help you get back on your feet.

Stroke and Positivity: Are They a Toxic Duo or Optimistic Horizon?

 

I'm stubborn, but there comes a point where I will say, explain your side of the equation. Then I listen closely to perhaps form a new opinion, different from the first, on the subject at hand.

I wrote a blog post in Facebook recently that said a stroke gives you nothing positive. And I meant from the physical side in having one. But too late for post-written clarifications. That post received one on most vitriolic reactions since I started the blog 12 years ago. 

So, of course, positivity and stroke bothered me. When brain injury occurs, for many survivors, they consider it a hiccup to life's plans. I'll get better, they tell themselves, and as the months go on, the confidence wanes because they are not getting better at the speed they want. With only one hand on the non-affected side and one affected leg throbbing and tingling and constantly going into random spasms, they are subject to give up hope. 

Nahal Mavadatt et al wrote in a scholarly study or post-stroke and positivity. "Post-stroke psychological problems predict poor recovery, while positive affect enables patients to focus on rehabilitation and may improve functional outcomes. Positive Mental Training (PosMT), a guided self-help audio shows promise as a tool in promoting positivity, optimism, and resilience." 

The researchers believe that PosMT works, but depression among stroke survivors often negates that option, having stroke dictate the course of things rather than looking forward to an optimistic future by the people themselves. Attitude comes all the way down the pole. Look up "Positive Mental Training for strokes." You'll see a long list of possibilities to buy. Do they work? 

Having heard over 350 stories in my Brain Exchange organization, co-founded by Sara Riggs, I am convinced, just like snowflakes, no two stories are the same and the old adage rings true: every stroke is different.

Robert Perna and Lindsey Harik, in another study, said, "Psychological disturbances may affect rehabilitation outcomes through a reduction in adherence to home exercise programs, reduced energy level, increased fatigue, reduced frustration tolerance, and potentially less motivation and hope about the future."

Of course, that's true. With up to 75% of stroke survivors having some physical impairment that affects each of those points, young to old, how can it not! 

So what, if any, are the positive effects of having a stroke? Yes, there are some. Stroke survivors say:

• more tolerance for disabled people
• increased empathy
• additional patience
• added compassion
• interest in other kinds of disability

I notice it in myself, and I see it in those around me. So do you have to have a stroke in order to satisfy that list? I imagine you do, or be working in some kind of religious or healthcare occupation where those factors SHOULD BE a given. Please read The Tales of a Stroke Patient. In healthcare, trust me--they aren't always. 

Woulda, Coulda, Shoulda: But How About "Did"?

I "coulda" gone to the doctor when my leg pain escalated, but I didn't want to miss a day of work. I "shoulda" gone to the doctor while the increasingly, very worst headache of my life began, but I had to stop at the market. I "woulda" gone to the doctor, but I didn't want to miss an episode of American Idol. Coulda, shoulda, woulda can be life-changing. It was for me. They were all lame excuses. And the price of doing those things almost killed me--literally. I take little comfort in knowing that many people followed in my footsteps. Does coulda, woulda, shoulda ring your bell?

Around 80 percent of strokes are preventable, according to the American Stroke Association (ASA), and it's the fifth-leading cause of death in the United States, and some Americans have multiple risk factors like: 

 

• Diabetes
• Heart disease
• High blood pressure
• Cigarette smoking
• High cholesterol
• Peripheral artery disease
• Obesity
• Poor diet

The ASA also says for every minute a stroke is left untreated, up to 2 million brain cells die.

Scared yet? You should be. But the 80 percent of known risk factors didn't apply to me. I had Protein S Deficiency, a genetic disorder that causes blood clots, or blockages, to the brain.

But better news. There's a blood test for Protein S Deficiency which is a disorder of blood clotting. People with Protein S deficiency are at risk of a type of clot called a deep vein thrombosis (DVT) that occurs in the deep veins of the arms or legs. 

I had multiple blood clots in all my extremities. Thus, a DVT. Nobody could prevent my stroke. For other people, if you partake in or have any of the risk factors mentioned above, it would be prudent to get tested and rule out Protein S Deficiency. Check with your PCP because it's a specialized test and not every lab complies. 

COVID and the Rehab Facility: Talk About a Clusterfuck!

I found out from the Emergency Room doc--after I had fallen 3 times in 2 days from the lack of power in my stroke-disabled,  weak leg--that I tested positive for COVID; me, who is basically a shut-in while pandemic surges forth. 

So I had to go to a rehab facility for the falls, to once again reclaim the strength in my feeble leg. Because of the COVID, once they found one that would even ACCEPT COVID patients, I went. Three days after I was there, I really thought that the time had come for me to die. At 2 am, I wrote my sons burial instructions and some relevant memories of all three of us as my breathing was impeded by the enormous congestion. 

At 6 am, the tide had turned. I slowly became less congested in the weeks to follow. But I was still positive. Everybody--the CNAs, the nurses, the doctors, the therapists, the clinical social worker--who entered the room wore a long gown that hovered above the floor. Nobody knew why when I asked them. They had face shields and N-95 masks, and I started to feel like pariah, diseased and isolated. 

After the third week, I was tested again, and it was negative. Off came the workers' gowns, off came the face shields. But they still wore N-95 masks. I had to wear a mask when I exercised in the hallway. But some other patients in the hallway were maskless. I didn't understand why nobody told them!

It was a clusterfuck for sure. I didn't say anything to those patients, escalating their misery to have gone to rehab in the first place. But why didn't the CNAs or the nurses say something about their maskless faces? I understood the answer after a few seconds on thinking about it. NO ONE, EVEN THE SUPPOSED EXPERTS AND RESEARCHERS, KNOWS THE ANSWERS! 

As Jimmy Dore, my favorite podcaster, says, "You're all going to get it [COVID]." The vaccinated usually would feel less of the symptoms longterm, but Dore who was vaccinated still feels awful after the 2nd Moderna jab, has joint pain, and still experiencing a stiff neck on same side the shot was administered.

I'll say it again: NO ONE, EVEN THE SUPPOSED EXPERTS AND RESEARCHERS, KNOWS THE ANSWERS! You just have to live with it, whatever the consequences are. Or not. 

...With My Private Part Flapping in the Breeze

 

I'm in a skilled nursing rehab facility currently with a week left to go because I fell again where I seriously gauged my knee and hand big time. The pics are gruesome, and yes, stitches on my knee right down to the joint. The hand left an ugly scar, but I'm not getting married again to display proudly the ring on my finger. Once was enough. Marriage, that is.

Anyway, I'm in Portland right now, and the name of this skilled nursing place isn't important because, with one bad seed of Certified Nursing Assistants (CNAs) among many good ones, it could happen anywhere. 

I came in on July 27, unable to move my feet to walk and with broken capillaries on my left thigh that were dark from bleeding under the skin. Like I said, big time.

Priorities, at least for me, are constantly changing. Before the fall, joyously vegan, I overly stressed to my assistant that there must be rice in my hummus, red pepper, olives, and black bean burritos because she or I sometimes forgot. Now, the pain was my priority, screaming loudly from my hospital bed any time--day or night--completely without drama. I was on Oxycodone and Tylenol, sometimes taken together, and it took a half hour at least for the pain to subside.

As I came to improve slowly with the PT and OT assisting me, I could see, at last, the light at the end of the tunnel. Now for the first time, I have zero pain. But at times, because getting my brace and shoes without which I hadn't walked in my stroke since 2009, was too time-consuming for the CNAs, they brought me the bedpan on which I was willing to compromise. 

I saw this particular CNA before. Her demeanor was rushed, hurried, with me and other people. It wasn't the attitude that any patients want, especially brain-injured people of which I am one. She entered my spacious, two-bed and bath room out of view. I was lying down.

"You rang for help?" she asked begrudgingly, secluding herself behind the curtain.

"Yes. But come to where I can see you closer," I said. 

"I'm right here," she said, still out of view, as she took her time getting the gown on for protection because we had two staff members with COVID yesterday.

She appeared now.

I said, "I might have soiled my pants [I didn't, but half my body is paralyzed and I couldn't determine]. The reason I used the call bell was because I have to go the bathroom right away, and I didn't want to yell the news across wherever you were located." 

I didn't tell her I had been ringing for 45 minutes. All the CNAs are constantly busy with placing and removing bedpans, bringing in meals, and generally attending to the patients' whims. I know that.

"So you want me to clean you up and put on a new gown if I get it dirty? Finish your business and then I'll clean you up." 

She attempted to leave when I demanded, "I. Want. A. Bedpan. Now." The thought of pooping more just wasn't acceptable without the bedpan, like pooping into the winds. Uh, no.

So she went behind the curtain again and returned with the bedpan and sour looks. 

"I'll be back," she said with a snarl, or at least I heard it that way.

When she left, I called for the nurse manager. (FYI: If anything goes wrong with those attending you, call for the nurse manager. There's always one on every shift). Something had to be done. 

The CNA returned the same time as the nurse manager and both came into my room. The lower half of my body was still exposed, not exactly the best way to present an argument, with the private part flapping in the breeze from the fan.

"I don't want this woman to come to my room any longer," I said, gesturing at the CNA. "She has a bad attitude and it's not the first time I witnessed it. If somebody requests a bedpan, there shouldn't be any dispute about it. She needs re-training!" (I'm a big fan of training, having done training for others most of my professional career). 

The nurse manager was apologetic on behalf of the facility, but even she knew the damage was already done and it was too late for apologies. The nurse manager had the decency to cover my private part, also too late. And then, the two of them left. 

A couple of hours later, I resisted the urge to feel sorry for the CNA who had to learn the lesson of compassion the hard way. Maybe, just maybe, that lesson will help others who can't stand up for themselves.

4 Things That Stroke Survivors Think About, Whether They Admit It Or Not

There was a commercial back in the 90s. A man, supposedly talking to potential drug users, holds up an egg. "This is your brain." [cracks the egg on the frying 

pan] After watching the egg fry for a couple of seconds, the same man says, "This is your brain on drugs. [pause while egg fries] Any questions?" Great analogy. 

There are therapies out there for drug users and if they don’t leave before the therapy is finished, and if they don’t do drugs ever again, chances are they will recover fully. Same thing with alcoholics. Don’t leave the therapy before it’s finished. Don’t have another drink ever. 

Not so with the brain-injured. There are not chances for full recovery no matter what you do more often than not, and here is where the 4 things come into play. People say “stuff” when they come to visit a stroke survivor, and the stroke survivor, maybe glad of the company, doesn’t say what’s in his or her mind. But the survivor is thinking for sure. As long as you’re not in a coma, this is what the visitor says, and this what the survivor thinks: 

 Visitor: You look great! 

 Stroke survivor’s mind: Do you have any idea what I am going through? I feel terrible inside. What do you mean? Do I look like the last time you saw me? 

Visitor: What are you trying? 

Stroke survivor’s mind: Am I looking lazy? Are you keeping a tab on what I am doing? Overseeing my progress? I am stressed out over the things they make me do. 

Visitor: Let’s be positive. 

Stroke survivor’s mind: This injury feels like hell. I am tired of fighting it. And I need to put up some extra effort to assure you I look positive? Screw that! 

Visitor: You need to learn to treat it like normal. 

Stroke survivor’s mind: Come on! This is by no means normal! I am not stupid! I have been trying so hard, okay? So please shut up and stop lecturing me so cluelessly! 1

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People say stupid stuff. That’s a given. But if you go and visit a brain-injured person, remember these things, and just stop. Talk about the weather. Talk about a movie or a just completed book. Talk about a meal. But for cryin’ out loud, don’t say these 4 things. OK? 

1: This experiment–what stroke survivors are really thinking– comes from an exercise Daniel Gu was conducting in which Brain Exchange members had to think of what Wendy–a fictional character who is also a survivor–would think to herself when asked. Kudos, Daniel, for reporting back so efficiently about these glaring 4 things.

Younger or Older: If You’re Destined to Have One, When Is It Better to Have a Stroke or Other TBI?

 

I had a stroke in 2009 and I was 61. So the question I continued to ask myself, even now 13 years later as soon as I came out of the coma, is it better to have youth on your side or is it better to have a stroke or other traumatic brain injury in your twilight years? There are pros and cons.

Before 50 

Pros: Ah! Youth! The advantages to having a stroke when you haven’t reached 50 yet have things to do most with recovery. As a rule, the younger you are when things went haywire, the faster the recovery will come. Of course, there are exceptions, as with any rule, and I don’t have proof that if you have a stroke before 50, there will be clear sailing from that point on. But the chances are greater. Watch this video:

https://www.youtube.com/watch?v=VGuBMroX7c8

Cons:  You’re just starting or in the middle of your career, whether you’re a barista or middle management, really everyone who works, as a matter of fact, when suddenly, because that’s all it takes, nothing. Depending on the severity, you may not be able to return. And if you return, prejudices come into play. All eyes are on the TBI survivor and that alone may make you screw up. They, the powers that be, see that you’re different, even if you’re not. Depression is greater in the under 50 crowd because you feel cheated. Emotions are stronger like guilt and frustration may come into play greater than the after 50 group.

After 50

Pros:  You understand sooner the whys and wherefores, limits and foolishness of your actions. You may feel like a grownup for the first time in your life, and that’s a good thing. You take absolutely nothing for granted. You start thinking about support groups, where laughter is the best medicine. 

Cons: You may think about death more and, even though you won’t feel it, how cold you will be six-feet under. Older people fall. It’s just the way it is. And having a fall or, to lesser extent, even an accident, sometimes results in a stroke or other TBI, and in that singular moment is the better part than what comes after, like lingering headaches, double vision, nasty incontinence, just to name a few. 

TBI survivors, do you feel the same way? No doubt some of you do, barring the exceptional ones like the survivor in the video or the ones who hide behind their positivity in a glass shell, ready to be shattered at any moment with another TBI!

Important Tips and Considerations When Researching Senior Care Facilities

This guest post was written by Claire Wentz at CaringFromAfar.com who wants you to know the scoop on choosing the right senior care facility. She has links to other websites which I found extremely helpful. I have faith in Claire that it helps if you're looking!

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Statistics show that seven out of every ten people will need assistance of some form during their lifetimes. In 2018, over 900,000 individuals resided in residential care facilities. According to the numbers, individuals entering their 65th year have a close to 70% likelihood of requiring some kind of long-term support or aid in the future.

If your loved ones have reached the age where they need more help than you can offer, nursing homes or assisted living facilities may be the best option. However, locating the right one involves many considerations. The Tales of a Stroke Patient presents the following article on what you need to consider when researching senior care facilities.

Does the Establishment Provide the Services Needed To Fulfill Your Loved One's Special Needs?

Not all facilities possess the means to provide specialized care. For instance, not all of them have the resources and trained faculty to deal with problems arising from dementia. Loved ones who suffer from Alzheimer's or a similar disease typically need specialized memory care services. Urinary incontinence is another condition that may require more care than some facilities offer.

Another factor to consider is that assisted living homes and nursing homes are not the same. If your loved one is unable to cook and needs around-the-clock medical care and extensive aid performing daily activities, a nursing home may be more suited to those needs. While assisted living facilities offer access to similar services, the aid offered is not as expansive and these establishments provide more independence, such as allowing residents to cook, share rooms and participate in a wider range of recreational activities. Visit facility websites, social media pages and the facilities themselves to verify exactly what services they do and do not offer. 

Does the Establishment Meet Certain Standards?

With all the news stories circulating about poor nursing homes, it has become even more imperative to personally check the quality of the institutions that will house and care for your loved ones in their remaining years. Read reviews to learn from other people's experiences. Talk to the staff and gauge their enthusiasm and competence. Individuals that seem to enjoy their work are often more invested in their patients and provide better care.

Ask questions, such as "Are the workers required to undergo background checks before being hired?" and "Are employees licensed and trained?" Is the facility equipped to deal with dietary needs and physical disabilities? Does it have safety and handicap measures such as clearly marked exits, wheelchair ramps, handrails and good lighting? How frequently does the staff check on the residents? Walk around and get a feel of the facility, if possible. 

Does the Establishment Fall Within the Affordable Range?

The average cost associated with nursing homes and assisted living facilities varies based on location. Medicare may cover a portion of the expense up to a certain time, while Medicaid can pay for all of it but has stringent qualification requirements. Pick an affordable facility.

If you need funds, one way to acquire them is by selling a home. However, beware of hidden costs and remember that there are other considerations such as realtor fees when figuring out how much you can make from the sale. For example, if there is a mortgage, you need to look at the outstanding balance. The price you set will also be influenced by the average realty prices in the area. If you need help figuring this out, there are helpful online calculators that can estimate how much you could make from the sale. This will give you a reasonable estimate on which to base your decisions.

Taking the time to perform research and evaluate each facility helps ensure your loved one lives in comfort. When choosing, considering the cost and closeness is also vital.

Brought to you by Joyce Hoffman and

The Tales of a Stroke Patient, the true story behind my hemorrhagic stroke and its consequences, including gruesome health professionals, frightful depression, and near-death encounters. I'll take you on the journey in this blog I've written for over 12 years, but be prepared for a bumpy ride. For more information, please visit my website or contact me today for the chance to do a guest blog!

If You Don't Believe in God, This Video Isn't Your Jam

Just because you had a stroke doesn't mean that you wronged God, or vice versa. Maybe, just maybe, He has another plan for you.

Clem Suder, the man who showed me faith again--he a Christian, I a Jew