Sex and the Stroke Survivor: A Case of Futility?

I knew I had to write about it. I'd been thinking about getting something done on the laptop for over a year, but every time I sat down to write about it, I'd think about some other topic. And then the brochure came. So now's the time. This is the best I've got.
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Stroke Connection magazine just published a glossy, comprehensive brochure entitled, "Living with Disability After Stroke," and I was sure that the "s" word was in it.  (All right, sex, ok?) But it wasn't. I didn't understand how they, meaning the writer, editor, somebody, could have left it out. I did some research to find the reason why.

I found out that no one took the blame for omitting the topic, but most people who have partners think about sex post-stroke, or rather the guilt in not satisfying the other half, (not necessarily the better half. Just sayin'). The most common question in my email asked by stroke survivors is, can it even be possible to have the feelings about sex like I did before the stroke.

The National Stroke Association says, "The need to love and be loved, and to have the physical and mental release sex provides, is important. But having sex after stroke can present problems or concerns for you and your partner." The article goes on to say that lubrication, incontinence, and indifference are the top three.

Hmmm. More research, I said.

Aside from "been there, done that" masturbation if you feel the need, there is the Intimate Rider. Known as the apparatus [albeit needless, at least to me] "helping couples overcome physical challenges & disabilities for years," the Intimate Rider allows partners to achieve a full range of motion without maximal effort, permitting "you and your partner to unleash your intimacy in a way that was not possible before-- the way you deserve!" Deserve? How presumptive!

To me, the Intimate Rider looks like a beach chair and an army cot at the uncool price of $365, but if buying it gets you in the mood....

Then there's the Positioning Support Strap--$16--that "alleviates some of the pressure from your back and will bring you even closer to your partner as you enjoy the IntimateRider. Simply wrap the strap around the hips of your partner as she waits for you on all fours."

Huh? A bit of sexism? Who says she wants to wait for you on all fours? Maybe he'd be on all fours.

The useful Thera-Band straps

Anyway, you could always improvise the Positioning Support Strap with a Thera-Band strap used in physical therapy, without mentioning the real reason. Make up something, like you want a Thera-Band strap to tie up your dog at night. Be brief about it, but go ahead. You can do it.

Seriously, though, sex after stroke may present insurmountable problems, like:
* inability to move into positions that are comfortable, or
* erectile dysfunction where Viagra doesn't work, or
* fatigue, common in stroke survivors, or
* "not sexy" incontinence getting in the way, or
* depression, the feeling-blue syndrome, or
* decreased libido where you're never in the mood for the time being, or
* fear of another stroke.

There are plenty more.

If you're having problems, talk to your partner, but oftentimes, that's not enough. There could be shame or guilt or neglect on the part of one partner or the other. If any one of the three surfaces, go and seek help for it, assuming the two of you want to get help. A psychologist who specializes in sexual malfunction wouldn't be a bad place to start. The two of you have to go. One of you just wouldn't work. Ever.

Thoughtless Person: You Didn't Finish the Book YET? Stroke Survivor: No, Dumbass. Remember? I've Had a Stroke!

Reading is to the mind what exercise is to the body. Joseph Addison
Read more at: http://www.brainyquote.com/search_results.html?q=reading

John Addison (1672 –1719), the essayist, song writer, playwright, and diplomat, is famous for that quote about reading: Reading is to the mind what exercise is to the body. Truth be told, there wasn't much to do in that time. Sometimes, just for a few seconds, I would have liked to be part of that generation, where reading and writing and speaking were the high points of the day. People were smarter back then. Just look at the Constitution and the Declaration of Independence! But I digress.

Back to the point, I always read slowly, absorbing and silently verbalizing every word, not wanting the book or reports to ever end. About a month before I had a stroke, I wanted to take up speed reading. But work piled up even more and I never got around to it.

Seven years later after my stroke, I read an article in Lifehacker,  written by Thorin Klosowski, who reviewed speed reading methodologies. Klosowski concluded that "speed reading anything you need to truly comprehend is probably a bad idea. However, if you have a few documents you need to get through or you're reading something that isn't that important, these methods can still be worthwhile. Just know that you won't become a super-fast reading comprehension machine."

So I gave up the notion and was satisfied with my 350 words per minute which, as it turns out, falls within the range of normalcy, especially grateful that my double vision post-stroke disappeared within five weeks. But not everybody is so lucky when it comes to the written word, and the trouble comes about mainly from dyslexia or aphasia in stroke survivors. And my point being, both of them affect reading.

Dysarthria is garbled or unintelligible speech.

Source: HealthTap, https://www.healthtap.com/user_questions/22470

Dysarthria is garbled or unintelligible speech.

Source: HealthTap, https://www.healthtap.com/user_questions/2247I might offend the speech and language out there in severely minimizing the descriptions of each, but I'll proceed anywaDysarthria is garbled or unintelligible speech

Dyslexia, also called associated dyslexia or alexia, occurs often in reading when the brain's ability to read is disrupted by the size and location of each individual stroke, even when the writing ability remains intact. The process of paying bills and following written instructions, for example, are often followed by increasing anger and frustration. A dyslexic individual would see letters in different shapes. To compensate, many individuals use audiotape resources, but the process of reading recovery is complex, depending on the severity and location of the stroke.

Aphasia is damage to the language areas of the brain. The three major kinds of aphasia are:

Wernicke's Aphasia where stroke survivors often have difficulty with understanding speech and may not be cognizant of saying the wrong words. Reading and writing are often majorly affected.

Broca's Aphasia where the stroke survivors' speech are limited often to less than five words, but they may be able to understand speech and be able to read but have difficulty with writing.

Global Aphasia where stroke survivors lost the ability to read and write. It is a result of substantial damage to the language areas of the brain. 

Whatever the case, Speech and Language Therapists (SLT) could help. Make sure you go and visit one for diagnosis and remedies. Without reading, you may be lost forever if you don't seek out advice. Call your local hospital to start your journey to find a certified SLT. You have much to gain and nothing to lose.

Religion, Spirituality, and Chronic Illness: Do They Really Make a Difference in Recovery?

This is one of those posts that transcends beyond stroke survivors. In fact, it's my first. So welcome diabetics, cancer patients, heart anomalies and, of course, stroke survivors. There are certainly more. This post asks the big question: Do religion and spirituality really work to make your condition, or someone you know, or someone you read about, more tolerable, improved, or completely erased?

Dr. Larry Dossey, an Internal Medicine specialist, says in the Huffington Post, religion is the ordered set of beliefs, behaviors, and practices in a group of similar-thinking people. Spirituality is different in that it links to a higher power of another nature, sometimes nature itself. Not all religious souls are spiritual, nor are all spiritual people religious. But they both recognize prayer as transmission to whoever is out there, whether it's God, Jesus, Buddha, Allah, among others, or simply the universe at large. 

"Compelling evidence suggests that those who follow a spiritual path in their lives live several years longer than those who do not follow such a path, and that they experience a lower incidence of almost all major diseases," says Dossey.

So to follow that line of thought, do prayers matter? Research, including my own, says prayers go hand-in-hand with positive thinking. I see it on Facebook all the time: please send your prayers to my child with leukemia, please pray for my brother who had a head-on crash, and so on. I started thinking, those are people of faith (the ones who live longer), who really believe that prayers help. 

That way of thinking is infectious. Now I sort of do, too. But not completely. I have become an agnostic, (or not knowing if God exists). How could I get a stroke, for example, if God looked out for me. To that, others counter, everything happens for a reason. That is why I'm on the fence, but the everything-happens-for-a-reason people are tipping the scale. But then again, who am I to say. I believe that my father is my guardian angel, for cryin' out loud. But I digress.

In an article published in an issue of Mayo Clinic Proceedings, Mayo Clinic researchers reviewed the relationship between religion or spirituality (or both) and its tie to any sort of recovery. The researchers found "a majority of the nearly 350 studies of physical health and 850 studies of mental health that have used religious and spiritual variables, that religious involvement and spirituality, are associated with better health outcomes."

In a recent segment on Good Morning America, Dr. Richard Besser, ABC News's Chief Health and Medical Editor, said practicing a religion may be good for your health where medicine and faith often intersect.

Says Besser, "Lester Breslow, a true pioneer in public health...[conducted a study] with Professor James E. Enstrom of the University of California, Los Angeles, and showed that the life expectancy of Mormon men was almost ten years longer than that of the general population of white American males. Female Mormons lived between five and six years longer than their general population counterparts."

 

The pair also found the introspective nature of religious services can lower stress and foster love, forgiveness, hope, and optimism, which leads to a positive outlook on life.

The University of Maryland conducted a study and found that 67% of the specialists were praying for a patient. Compared to patients who were not prayed for, patients who were prayed for showed improvements in the paths of their illnesses, and fewer complications and deaths.

A clinical study at Duke University found that patients who attend religious services tend to have better outcomes, like immune function. In another clinical study of 232 adults who were 60 years or older and who underwent heart surgery, religious patients were "3 times less likely to die within the 6 months after surgery than those who were not."   

Also, Randy Travis, that Hall-of-Famer country star, had a stroke recently. His wife, Mary, professed, "They really said there was no hope; go ahead and pull the plug. I went to his bedside and I said, 'Baby, you've got to give me some more fight.' And I knew that he had a little talk with Jesus, because he squeezed my hand, and a little tear fell down," she continued. "And I knew that he wasn't through yet." More prayer, I imagine.

Enough? I may not know if God exists, but I'm leaning toward the positive side that He does. As my grandmother used to say about anything, "It couldn't hurt. So try." I'm going to join a congregation as my first step toward worship and then we'll see where it goes. While I'm there, I'll pray for others and, truth be told, a little for myself.

Swallowing, a Simple Thing You Take for Granted

Almost 7 years ago, when I was brand new to the constantly changing, faceless group known as stroke survivors in the rehab facility, I was more absorbed with my lack of right-sided movement than with anything else. And I was on intravenous, plus a feeding tube for 5 weeks that injected "formula" directly into my gastrointestinal tract to keep me alive in name only. I had no appetite anyway because the noxious depression, accompanied by random seizures, kept on going, never stopping, even for mealtime.

After 5 weeks, I was subject to a swallowing test where, if I passed in the dimly lit room with an accompanying screen with video imaging to see if my throat muscles moved correctly, I could eat what is known as a mechanical soft diet, a collection of foods that disgusted me, just because: soft mashed potatoes smothered in gravy, jello, pudding, overcooked vegetables--those sorts of things, soft things. The first time, I failed the test. I wasn't swallowing correctly and my tongue was going awry, but I didn't even know. But a week later, I passed.

There was a separate section set up for all those who passed that test, the controlled feast as I called it, and across from each person sat a speech therapist taking notes on the progress while the people ate the mechanical soft stuff. It made me nervous and a little edgy, but I ate, albeit drooling with food occasionally falling out, little bits at a time to avoid choking, to keep the feeding tube removal on schedule.

So all tolled, 6 weeks, and then I could eat without the intent gaze of the speech therapist watching me, the feeding tube was out and, as I say in my book, the tuna sandwich, which I ordered first, never tasted so good.

You might take the act of swallowing for granted, but stroke survivors shouldn't. Neither should anybody else. Swallowing, as I came to find out, is a complicated process where any one thing could go wrong. Swallowing food or liquid involves moving the substance from the mouth, down the back of the throat, through the esophagus, and into the stomach.

The condition is called dysphagia, when a food or drink substance that is swallowed enters the airways and/or lungs, sometimes resulting in pneumonia. In most people, aspiration (or the sucking of food or drink) would produce a ferocious cough, often expelling what is in there. In stroke patients, food or liquid could go down the wrong way, and they wouldn't even be aware of it because of the paralysis. Thus, the test that was given to me.

Suzanne Kowler, a speech and language pathologist at St. Mary's Medical Center Acute Rehabilitation unit in San Francisco, says, "If all the muscles on one side are weak or paralyzed, it's going to be difficult to chew. They'll have something sticking on the right [or left] side of their mouth. Normally it takes about a second to swallow. Even a small disruption places that person at risk for aspiration into the lungs."

Through Kowler, I understood the test better. A diagnostic tool called a modified barium test, or videofluoroscopic swallowing study (VFSS), allows the therapist to watch a video in real time of a stroke patient consuming various liquids and foods.

"We can see if the food is going into the airway or not. And we can see when the patient coughs if they're effectively expelling food from the airway," says Kowler. The test also demonstrates which muscles are not functioning.

The National Institute for Health says aside from stroke, conditions like traumatic brain injury, cerebral palsy, Parkinson disease and other degenerative neurological disorders such as amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease), multiple sclerosis, progressive supranuclear palsy, Huntington disease, and myasthenia gravis could experience dysphagia.

The overwhelming research says to eat slowly and don't recline--or worse, lay flat on your back--when you eat. Eating shouldn't be a hazard. But you already knew that, didn't you?

One more thing: I couldn't drink water years after my stroke because it brought on a choking fit. The speech therapist said that water is "the thinnest liquid that there is--you have to drink a thicker substance." After that explanation, instead of apple juice which was my only drink for the next year and high in calories, I switched to ginger ale. When I found out a few months later the ginger ale had high fructose corn syrup adding pounds, I diluted it with water. And then more water was added to the ginger ale.

I went to a festival about a year after that, and all they had was water. I was so thirsty it left me no choice but to drink it, bracing myself for the coughing spell. And you know what? I didn't cough, even one time. I've been drinking plain water for about a year now, and that diluted ginger ale was a blessing, the training, it turns out, to drink water again.

Can't Do's and Can Do's: A Stroke Survivor's Thoughts

I was in one of those moods recently, a gloomy day sitting by the useless sliding doors that lead out to the decent-sized balcony. That's what put me in the mood to begin with, those useless sliding doors that you need two hands to operate. My son, who is 6'1", strong as an ox, and also has two hands, had trouble opening them, even with 3-In-One Household Oil applied.

So I started making a mental list of all the things I can't and can do anymore. My depression left me 4 years ago, and it was almost 7 years post-stroke, so I wasn't in jeopardy of succumbing to depression again. My right arm is paralyzed from my hemorrhagic stroke, and I use it for a visual aid. Ergo, the can't and can.

Besides opening those sliding doors, here's the favorite list of 10 can't do's:

• Clap at a good performance (slapping my thigh wouldn't be heard above the thunderous crowd)
• Knit my sons scarves (even with the imperfections)
• Play the piano (I know, I know, there are pieces for only the left hand, and I wish I had a dollar for all the people who told me that, but the piano is supposed to be played with two hands, knucklehead)
• Run like the wind (it's all relative)
• Cook something that isn't a sandwich (I always dropped things so I gave up)
• Open a package or a bottle without using my teeth (my dentist would kill me)
• Go to a buffet (it's self-explanatory))
• Do a manicure by myself (I could paint the right hand, but the left? Smear, smear, smear....)
• Style my hair (scary when I let it air dry)
• Read a paperback book (the book sometimes closes involuntarily and I lose my place)

Here's the favorite list of 10 can do's:

Me with the can do's

• Enjoy a movie (I can still hear)
• Sing along with Pandora (my best app for music on the iPhone)
• Drink water (I couldn't until recently because of the stroke. I coughed violently; now easy peasy because I trained my throat with diluted ginger ale, adding more and more water)
• Ride my recumbent bike (I do 50 minutes, almost my goal of an hour)
• Tie my shoelaces one-handed (albeit slowly but impressive)
• Feel comfortable in my skin (I don't know when that happened, but I'm glad it did)
• Walk through the halls (because I can)
• Pour my own tea from a manageable pot (I have a routine that just took some practice --take the tea of the burner, and have the cup at the ready, and put the tea on another cool burner. Amazon: http://www.amazon.com/gp/product/B004MH2Q8G?psc=1&redirect=true&ref_=oh_aui_detailpage_o01_s00)
• Commune with nature (in short walks)

And this is my very favorite of all:

• WRITE THIS BLOG (I'm not a touch typist anymore, but I'm also not in a rush)

Disability Etiquette: It's for "Normals"!

This post should be read by everyone without a disability! Those WITH a disability will chuckle as they read. Or cry. That leaves EVERYONE!

I use the transport chair when there's a lot of ground to cover, like Walmart or the grocery store. It's also the only chair my personal assistants could lift up. The only bad part: the transport chair is un-wheelable since its tiny wheels don't allow me to propel myself forward like a regular wheelchair.

Otherwise, I walk, getting as much exercise as possible, with my personal assistant trailing behind me with the transport chair in case fatigue sets in and I can't walk anymore. (I don't like caregiver, caretaker--which, by the way, is for a parcel of land, not a person, companion, or aide so I single-handedly upgraded the job to personal assistant, or PA).

There is an interesting phenomenon that I noticed for almost the past 7 years since my hemorrhagic stroke. I feel invisible while sitting in the chair while the people to whom I'm speaking always direct the conversation to my PA, like I'm talking funny or I'm mentally incapable of understanding them. Sometimes I say, "Talk to me when you're talking to me," which works for some people and, if they still persist in having the conversation with my PA, I'll stand up from my chair and say that line a little louder. That always works.

My most recent event is when I went to the bank to get a certified check just 2 days ago. The assistant manager persisted in addressing my PA as if it's her account, and I stood up and repeated that talk-to-me-when-you're-talking-to-me spiel.

"Yes, ma'm, I think you talk good and I completely understand you."

It's "talk well," not "talk good," but I let that one slide.

After that exchange, she addressed me, not my PA. See? Always works.

I was talking to my friend, Benadette, who is one of the "normals" and who used to work in a stroke rehab facility. We got on to talking about "disability etiquette" somehow, an expression I never heard before, and she suggested a lady in the hospital who was an expert on that subject, but I decided to do some research of my own. That term was right up my alley, given that event in the bank and so much more, and there were articles galore.

Here is what I found. They're divided into do's and don'ts and they're for "normals,"--aides, caregivers, and all of the health professionals--all of the people we "disabled" people have to interact with on a daily basis. My top 10 favorites are:

DO: Speak directly to people with disabilities, not to the people who may be accompanying them. (Did you get that, bank manager, grocery store clerk, doctor's office receptionist?)

DO: Be patient rather than try to fill in the gaps or speak for the disabled person.
(Why the rush? Give us time!)

DO: Think of a wheelchair or other mobility assistance as a part of the user's personal space.
(Why lean on it, push it without asking, put your feet upon it, all of which happened to me?)

DO: Avoid patronizing people with disabilities by speaking extra slowly or patting them on the head, hand, or shoulder.
(One man even used baby talk with me, and I don't think that was a come on!)

DO: Pull up a chair or bend down to speak to someone in a wheelchair to make us both on the same level.
(I always feel, when somebody towers over me, diminished!)

DON'T: Describe people with disabilities as "superheroes," "inspiring," "courageous."
(People with disabilities just want to fit in. You get it?)

DON'T: Ask long questions with several parts. Many disabled people are, or have become, a one-tasker.
(Don't take a chance. Disabled people, even "normals," would rather you asked the question without several parts, like focusing on the second part and forgetting the first part. I have to laugh at our debates between the Dems and the 'Pubs. I used to teach Public Speaking and can just tell when the candidates forget one of the parts! A look of despair comes over their faces!)

DON'T: Pet a service animal.
(Just don't. Ask first. The service animal is hard at work!)

DON'T: Describe people with disabilities as "handicapped," "disabled," "victim," "crippled," or "damaged." Use "people with disabilities" instead.
(People are not defined as being less than perfect. By the way, nobody is perfect).

DON'T: Stare. We may be funny to watch, but still....
(Enough said!)

If people used their common sense, just their God-given smarts, they'd know most of these points. If that's true, and I really think it is, then why do they act stupid when it comes to "people with disabilities"?

As for me, (and I hope you, too), I am not defined by my disabled state. I just want to be one of the bunch, who forgets the key to my apartment a millisecond after locking the door, who becomes ditsy when my favorite group, Journey, comes on the radio, and who gets all mushy when someone wishes me a Happy Valentine's Day. Just one of the guys. Don't know why it's not possible.

Aspirin Desensitivity: I'm One of the 2%

It all started with Motrin.

About 30 years ago, I took a Motrin pill for back pain. About a minute later, my throat almost closed up, I started wheezing, and I had labored breathing, finding out later I was doomed to go into anaphylactic shock. But I didn't. The kids, then10 and 5, were downstairs playing, but I couldn't even call to them for help. I just waited for death, but luckily, the trauma passed a half hour later. I was 37 then. Lucky 37.

I hadn't taken aspirin since I was a kid, and Tylenol was recommended by my doctor anyway. Aspirin is an NSAID (Nonsteroidal anti-inflammatory drugs) and Motrin, too, over-the-counter medications that can be used to relieve mild aches and pains, and reduce inflammation. So apparently, I was allergic to NSAIDS. No big deal--until now.

I found out about 10 years later after that trauma that I had Samter's Triad, a condition that consists of only 3 things in conjunction: asthma, NSAID allergy, or commonly known as aspirin allergy, and nasal polyps. Samter's Triad was confirmed again about a year ago when I went to Dr.  Lee, an ENT (ear, nose, and throat) expert for nasal polyp removal.

She said I am under control with my asthma by taking Advair every day, but there is a doctor who can most likely rid me of aspirin allergy in order for the nasal polyps not to grow back. I thought, I had the polyps removed 3 times in Philadelphia, but I wouldn't have to do it again if I was desensitized to aspirin. Huh!

But, and I'm extrapolating, aspirin, too, is a blood thinner and I'm already on Warfarin , a blood thinner as well, and there is a risk for bleeding. That was about the 100th time I heard that--risk for bleeding--because I had a hemorrhagic stroke and that means bleeding in the brain.

I went to see Dr. Petrov as she suggested, an immunologist with smarts.

The overwhelming majority are helped by aspirin desensitivity, he said. I seen to recall only 2% are not desensitized. With the odds in my favor, I had an appointment for December 7 when I would go into the hospital for 4 days with a heart monitor and be observed. The heart monitor would be used if I stopped breathing, for example, monitored constantly by the nurses on the heart floor.

I'll give you the timeline because I kept a diary of the events and here it is. Stop here if you are faint of heart.

December 7:  Went into hospital in the evening to desensitize me from aspirin allergy. Desensitization would start early the next morning.

December 8:  Took 30 mg at 8am progressing to a baby aspirin, or 81 mg, throughout the day. Went through a rough spot as I was going through desensitivity for 12 hrs.

December 9: Called the nurse at 2am and said I was leaving in the morning. Desensitivity too much. She said desensitivity is rough but I had to hold strong. I repeated the baby aspirin at 8am. Progressed more during the day to an adult aspirin. Wheezing was off and on, but the energy level was at its lowest. Had to sit on a recliner in the hall before going back to my room.

December 10: Released from hospital with, presumably, no aspirin allergy any longer. Told to take 2 baby aspirin in the morning and again at night. Not convinced. Time will tell. Dr. Petrov's associate said that if I stop the aspirin for more than 24 hours, I would have to repeat the hospital procedure all over again.

December 11: I had more-than-usual fatigue. Coughing and wheezing.

December 12-13: I was occasionally breathless and minorly coughing, still off and on wheezing.

December 14-26: I thought I had contracted the flu somehow.

December 27-January 6: Still had lingering symptoms, but I thought I had contracted a cold.

January 7-14:  Left for Portland for a family reunion and started to wheeze there. Coughing and extremely fatigued.

January 15: Left for home and thought I had contracted another cold.

January 16-20: Started getting more breathless, increased wheezing and coughing, fatigue continued.

January 21: Went to give talk to Stroke Support Group and had nurse co-chair deliver my speech. After the event, went to ER on advice of nurse where they found nothing through blood tests, and wasn't admitted. Told them about the aspirin desensitivity, but no knowledge surfaced.

January 22-26: Still panting, coughing and wheezing intensified, and got the feeling it was the aspirin. "I'm poisoning myself by still taking aspirin," said to no one in particular, but continued with the aspirin. 

January 27: I finally stopped the aspirin myself in the morning. Went to a different ER where the doctor who gave me aspirin initially practices--same symptoms but increased intensity. They gave me a chest xray, chest scan, and blood tests; admitted for observation.

January 28-29:  Status changed to in-patient where full-blown wheezing, intense coughing, panting like a canine, and lethargic prevailed. Doctor confirmed I was one of 2% the aspirin desensitivity doesn't work for.

January 30: I was released with new medications--narcotic cough medicine, Predisone to reduce the inflammation, and Mucinex to cough up the congestion. Today, I see an improvement. Little wheezing, mild coughing with once-a-day flare ups, no breathlessness, no fatigue. 

January 31-today: No wheezing, just a rattle in the chest from congestion, still coughing at random times, nothing else. Energy restored!

I'm going to see the lung expert who will once again assure me it's not pneumonia (I already know that) and Dr. Lee to convince her that the worse that happens is I'll have to repeat the nasal polyps surgery some day, now that the aspirin and other NSAIDS allergies are back to stay--forever, I imagine.

I don't hold Dr. Petrov responsible at all for the unsettling events that took place in the last 2 months. He said, as I recall, 98% would be desensitized. The odds of aspirin desensitization were in my favor. It was a gamble and I lost. But at least I tried. Trying means not giving up. And trying is the only thing that matters.

Status Time: Almost Seven Years Later from the Stroke

It seems like a few years ago that I had the stroke. But it's almost seven years ago. April 8, 2009, is the date that is burned into my consciousness. The date follows me around, like the devil that it represents. Playing piano by ear, knitting scarves, clapping when required, all gone. People say, "Be positive," but sometimes, I just can't. A stroke doesn't make me stronger. It just reminds me how fragile the human body is. Some people say "re-birthday" when they celebrate the date on which the stroke happened. "Re-birthday?" Give me a break.

That being said, looking back, I have accomplished some things that make me know that I'm progressing. There is my book, "The Tales of a Stroke Patient," published in 2012, that documents all the time before, during, and after the stroke. I liked writing the book. For me, it was a catharsis, a chance to scream about awful CNAs, nurses and doctors who pretended not to hear me, all the time keeping the names of the rehab facility and the nursing home out of the book. (It was Bacharach Institute for Rehabilitation and Absecon Manor Nursing Home, both in Southern New Jersey. I don't give a shit now).

I started a blog called the same as the book, "The Tales of a Stroke Patient," in 2010. I still write it, as long as there are people to read it. (There are 15 million strokes a year worldwide so I imagine I won't run out of readers). Currently, I have almost 112,000 people reading my blog, though some are faithful fans who read it several times. My dashboard tells me I'm read in 6 out of 7 continents, Antarctica the holdout. I don't have anything against the Antarcticans. They are probably busy with global warming.

This month, the University of Pittsburgh Medical Center and I are starting two new stroke support groups (well, one's a group that needs to be resurrected and the other is new), and I am the leader in both. My mission is to help stroke survivors get an improved sense of self, to achieve for them what I couldn't achieve for myself back in the day: dignity, self-esteem, and empowerment. You'll be amazed at the speakers we'll book.

Nobody understands a stroke survivor aside from stroke survivors.
People write to me at least once a month saying, "My [husband, wife, friend] had a stroke and it's so difficult to talk to my [husband, wife, friend] because of the anger and frustration coming out."
"Of course," I say. "How would you like your life turned around in just a millisecond?"
Some people get it. Most don't, and that applies to health care providers and caregivers, too.

I fell, sometimes hard, breaking different parts of my body, I'm misunderstood though that's getting less and less, I drop things that need two hands to hold, but through it all, I'm still here. Why? It's like I told you. I have a mission, and it won't be completed any time soon. I'm moving to Portland, OR, soon, and the mission goes with me. Always the mission....

New Year's Resolutions for Everybody--EVEN ME!

I think of myself as more "normal" now, not altogether damaged by the stroke, thanks to the help of my therapist, Theresa, who says, "Everyone is damaged. It's called 'being human.'" I believe her now. And thus, even though I write the blog "The Tales of a Stroke Patient," I'm not as damaged as I thought. I now say, "Damage is a state of mind." I believe that, too.

I call this post "New Year's Resolutions for Everybody" because I think of myself as just a human now, one of the bunch, not especially damaged, struggling with life's obstacles put in my path to make me stronger. "Deal with it," I now say to myself. "Get over it." "Stop it." Expressions like that. So now, having my life almost in order (I'm still seeing Theresa though), on with my resolutions! As my mindset has changed, I promise myself:

#1: to revise my bucket list to include things, with assistance, like shopping and visiting favorite people in New York and traveling across the United States. In fact, I'm going to travel in the spring, headed for Nashville again, my favorite place to be with the Grand Ol' Opry's headliners, musicians filling the streets on Broadway, and southern cooking everyplace.

#2: to lose the 20 lbs I gained and stay thin forever. I realized the weight gain when I attempted to stand up from the sofa and it took me two tries. It's only a 20-lb loss to achieve my goal, but a thin person can move around a lot easier. But you already know that. Just before I got out of the hospital after 15 weeks in, I thought I was totally familiar with the layout of the therapy rooms. But much to my surprise, hidden behind a support column, I discovered a full-length mirror I hadn't seen before. I was surprised to see how a 20-lb loss made such a difference in how I looked and moved. I'm determined to do that again.

#3: to read faster. I had double vision right after the stroke that lasted for about 6 weeks. I covered my good eye to get the weak eye stronger and it worked. Now 6-1/2 years after, I read like I always did, reading every word like a recitation, but I want to improve the speed. I'm forcing myself to take in a group of words now and reading it all at once. Look at the picture to the right that explains the power of the brain. It takes practice so it rates as a resolution.

 #4: to use a new word every day, especially with dysarthria. There are several websites that offer word-a-day options.

http://www.oed.com/
http://www.merriam-webster.com
http://wordsmith.org/awad/index.html

#5: to enjoy the moment--any moment. I don't know when it exactly happened, and it wasn't recent, but as soon as I accomplish something, I'm on to the next thing. The memory fades. (I don't do that with friends--only experiences. I like those people that I consider friends). But let me give you an example. My second book, The Tales of a Stroke Patient, was published in 2012, and the next day, I lost the excitement and thought about the next book I would write. So in 2016, I'll concentrate on being happy in the moment. (My guess is I will not keep this resolution because "finding the next thing" is part of my personality. But I'll try).

Last year, I did 10 resolutions, and the year before that the same. I'm not tired of writing now, just satisfied with the new resolutions. Send me yours if you have a chance.

So this will be it until next year, just 12 days away. Happy New Year to all those who celebrate it. If you don't celebrate it, you're not missing much. It's the biggest non-event of the year! But resolutions, on the other hand, last the whole year. I have until December 31, 2016, to satisfy each of them. If I don't, so be it. Resolutions are between me and, well...me!

Dementia, Alzheimers and Stroke Survivors: Is There a Connection?

I always wondered, if Ronald Reagen, the 40th President of the United States, could get Alzheimers, with a plethora of decisions and strategies he had to accomplish, then anyone could get Alzheimers. When he died on June 5, 2004, at 93-years-old, it was pneumonia that killed him, a complication of Alzheimers. He wrote in a public statement early on in the disease in 1994, "Unfortunately, as Alzheimer's disease progresses, the family often bears a heavy burden." And indeed it does. My mom had Alzheimers.

Age is known as the most significant factor for dementia, the early stage of potential Alzheimers. Though it is uncommon to get dementia before 65, it happens. After 65, the likelihood of developing Alzheimer's disease doubles about every five years: 1 in 14 people over the age of 65 and 1 in 6 over the age of 80. The risk factors include increasingly higher blood pressure, changes in the immune system, and an increased incidence of some diseases including stroke.

But what is the reason, I ask. As it turns out, there are multiple reasons.

1. Folks who experience depression are more likely to develop dementia. STROKE SURVIVORS EXPERIENCE DEPRESSION.

2. People who have had severe head injuries are at increased risk of developing dementia. STROKE SURVIVORS ARE CONSIDERED BRAIN INJURED.

3. Diet can affect people's risk of developing many kinds of illnesses, including dementia. Too much saturated fat (read the labels) can cause narrowing of the arteries, making stroke more likely. STROKE SURVIVORS OFTEN ATE TOO MUCH SATURATED FAT.

4. Exercise helps to protect against many conditions, including dementia. Regular physical exercise helps to keep the heart and vascular system healthy. STROKE SURVIVORS WERE OFTEN COUCH POTATOES.

5. Smoking has a disastrous effect on the heart, lungs and vascular system, including the blood vessels in the brain. STROKE SURVIVORS OFTEN WERE FORMER SMOKERS.

6. Drinking alcohol in excess increases the risk of developing dementia and ultimately Alzheimer's. However, research suggests that light amounts may protect the brain against dementia and keep the heart and vascular system healthy.
STROKE SURVIVORS WERE SOMETIMES HEAVY DRINKERS.

(There is little research that "brain games" such a crossword puzzles lighten the risk of getting a stroke or of developing dimentia. Remember Reagen? He had to do a lot of thinking when he was President, like ending the Cold War).

And then there are the rest of us, who don't why the stroke occurred at all. I'll take a guess that what caused my stroke all began with an antibiotic. But I don't really know.
(http://stroketales.blogspot.com/2014_07_03_archive.html)

So the takeaway is this, to avoid a stroke or any other complication such as dementia or Alzheimers:

Do you know anyone who suffers from depression? Suggest a therapist.

Do you know anyone who is involved in activities that could cause head injuries? Get another activity.

Do you know anyone who eats junk food? Tell them the risks.

Do you know anyone who doesn't exercise? Urge them to get off their butts.

Do you know anyone who smokes? Advise them there are medications to stop.

Do you know anyone who is a heavy drinker? Encourage them to lighten the load.

I know, I know. Easier said than done. And they may still get a stroke or dementia or Alzheimers. But there's no harm in trying. Strokes suck. But so do the other two.