Caregivers Should Take Notice; Those They Care For Should Demand More

One never knows when he or she will be a caregiver. I lived in New Jersey for 17 years with my ex-partner. In the 12th year, I got a hemorrhagic stroke and at first, he was my caregiver. Role reversal indeed. But soon it overwhelmed him, not to mention the dangerous risks that I took, falling many times because I craved to be independent. In retrospect, I was selfish and stayed longer than I should have. The relationship was doomed and I understood why. I believe he did, too. And soon, I had to seek other caregivers, for both of our mental states of mind.

I started this blog in 2010 to mentor stroke survivors and, truth be told, to mentor myself, in a cathartic way. By writing about brain trauma, I became a stronger person, and I have my mother and father to thank for that.

Anyway, one day, in 2017, I received this email from Sally:

"My name is Sally and I am writing because as a former Manager of a care home, I learned how demanding and complex caregiving can be. While it can also be rewarding in itself, caregivers need all the help and support they can get.

"Now I work as the Content Manager for a small senior care site and I felt it was important we create a full resource guide for caregivers. It covers 30 essential sources of information and support for all kinds of caregivers."

She went on to say:

"Recently, I came across stroketales.blogspot.com and having read http://stroketales.blogspot.com/2017/02/the-caregivers-are-venting-and-stroke.html, I feel this is a subject you would like to cover."

Indeed I do, Sally. This advice comes from Sally who didn't have a stroke, but she nails it.
--------
Recovering From Stroke: How Caregivers Can Help

Stroke is by far one of the most devastating and sudden experiences that anyone can endure. Those who experience minor strokes have the challenge of rehabilitation, and some patients who go through major episodes of the medical condition face the horrific possibility of permanently losing vital cognitive and physical abilities. Regardless of the state a patient is in after suffering a stroke, recovery is possible with the help of patient caregivers. Here are three key ways for in-home nursing assistants to help their patients, and themselves, get through the stroke recovery process.

1. Stay Alert

It is probable that you've been given very specific instructions concerning medication. It is essential that they follow all stipulations outlined in their prescriptions to ensure a healthy recovery. Omitting even one regulation or falling behind schedule when administering medication can be detrimental to recuperating and may even be life-threatening.

Another area that requires the devout attention of the caregiver is in physical exercise and general mobility. It is possible and even recommended that stroke patients exercise on a daily basis so as to encourage proper recovery. Try and engage in light physical activity, but also be attentive to falls and injuries. It is quite common for those recovering from stroke to lose their balance while walking. You should not write off such incidents as part of the process, though, as every fall presents the possibility of a serious injury.

2. Encourage Good Nutrition

A person who has experienced a stroke is vulnerable to another attack. You should, therefore, eat meals filled with vitamins and other nutrients during breakfast, lunch, or dinner. It is also important that you encourage those recovering from stroke to eat fruits and vegetables more often than they consume foods with empty calories. Chips, milk chocolate, and soft drinks are enemies to stroke recovery.

3. Engage in Self-Care

Sometimes caregivers are so focused on their patients recovering from life-altering experiences such as stroke that they forget to take care of themselves. Such behavior can be detrimental to both the giver and receiver since stroke patients heavily rely on their nursing assistants for support during recovery. Caregivers can improve and maintain health by:
Keeping up with doctor’s visits
Eating a wide variety of nutritious foods
Taking time away from the job or even seeking professional help if the stress becomes too great

If you are a caregiver, then it is important to do everything within your power to avoid burnout. Remember that your stroke patients need you in good health and are excited about the road that lies ahead of them for rapid recovery.
--------
Sally's advice, though, is not only for caregivers. It also is for the patients they care for who should demand, to the best of their ability, that their caregivers stay on track.

The 30 essential sources to which Sally alludes were written by Kristen Hicks, exploring subjects helpful to seniors and their families for SeniorAdvisor.com. Click on the link to learn more about it

1. https://www.usa.gov/federal-agencies/administration-on-aging

The Administration on Aging is a government organization specifically devoted to providing programs and services to help aging seniors continue living independently. While the organization is primarily focused on the well being of seniors, it includes an Office of Supporter and Caregiver Services that helps provide funding to families for resources to help with caregiving.

2. Family Caregiver Alliance

The Family Caregiver Alliance is a nonprofit organization that provides services and education programs, as well as doing advocacy work to help encourage government policy that’s helpful to caregivers.

3. Caregiver Action Network

The Caregiver Action Network provides educational resources for caregivers and a forum to connect family caregivers with others dealing with similar issues.

4. Rosalynn Carter Institute for Caregiving

The Rosalynn Carter Institute for Caregiving provides support programs and training resources for caregivers, as well as advocacy to encourage greater institutional help for caregivers.

5. National Respite Network

Sometimes caregivers just need a break. The National Respite Network helps caregivers find respite services that temporarily take over some of the caregiving tasks so family caregivers can take a well-needed break.

     6. Become A Caregiver

If you are looking to become a caregiver anywhere in the United States, look no further than caregivers.com.  They help get families and caregivers in touch quickly and easily and will ensure the family gets the best caregiver they can while matching the caregiver’s skill set to the right family.

     7. Benefits Checkup

Navigating the system of benefits available to seniors is tough, and many seniors leave potential aid or money on the table because they don’t know it’s out there for them. The Benefits Checkup site makes it easier to quickly see what benefits are available in your area that you or your loved one are likely to qualify for.

     8. Family Care Navigator

The support resources available to caregivers vary based on your geographic location. The Family Care Navigator helps you hone in on what programs and organizations are specifically available to you in your state.

     9. National Volunteer Caregiving Network

The National Volunteer Caregiving Network helps connect volunteers that want to help others in their communities with the seniors or people with disabilities that need that help. Volunteers help with things like transportation, errands, and home repairs.

     10. Lotsa Helping Hands

Lotsa Helping Hands is another website that helps connect volunteers with caregivers in their area that need some extra help. Caregivers can put the help they need on the website’s calendar and available volunteers step in to provide help with tasks like meal delivery or rides to appointments.

     11. Eldercare Locator

The Eldercare Locator is a resource provided by the Administration on Aging to help seniors and caregivers find trusted professionals to help with the various services seniors commonly need, like home modifications and legal assistance.

     12. Well Spouse Association

Many senior caregivers are spouses taking care of their partner. The Well Spouse Association helps senior caregivers in this position tap into a larger community of other caregivers taking care of a spouse.

     13. Find Support Groups

Most communities have a number of support groups that caregivers can attend to find others struggling with similar challenges. Often, these support groups are specific to the particular issue your loved one is dealing with, such as cancer or Alzheimer’s support groups. These groups can be an invaluable resource for finding other people who understand what you’re going through and having a healthy outlet for your feelings.

     14. Senior Day Care

Adult day care lets you drop off your senior loved one for the day while you work or run errands and trust that they’ll be in the care of trained staff. Senior day care also gives seniors a chance to socialize and stay busy in a new environment for the day, which many seniors start to need more as they age.

     15. In-home Care

In-home care professionals come to your home for a set number of hours to help out with the care your loved one needs. You can hire in-home care workers to provide basic around-the-house help, or home health care workers to provide health care to your loved one.

     16. Assisted Living

While many families hesitate to take the step of moving a senior loved one to assisted living, sometimes it really is the best choice for everyone. Assisted living facilities have staff available all hours of day to help with the ADLs seniors often need assistance with.

     17. Respite Care

If you don’t want to take a step that feels as permanent as assisted living, but you know you need a break, respite care can take the caregiving duties off your hands for a temporary period.  

     18. Meals on Wheels

A big part of taking care of someone is making sure that they get enough meals each day to stay healthy. For overwhelmed caregivers, that’s not a small task. Meals on Wheels can help fill in with that part of your job in order to take one more thing off your plate.

     19. Independent Transportation Network

Once your loved one can no longer safely drive, getting them out to appointments and social events becomes another difficulty to manage. ITN helps seniors access affordable transportation options that provide the level of help seniors often need.

     20. LongTermCare.gov

LongTermCare.gov is a government website full of educational resources to help people plan for long-term care and understand the options and benefits available to them.

     21. Guide to Veteran’s Long-Term Care

Veterans have even more potential benefits to tap into than most other seniors. If your loved one is a veteran or the spouse of one, this website can help you understand the benefits available to them.

     22. National Institute on Aging’s Alzheimer’s Caregiving Resources

A growing number of people provide care for Alzheimer’s patients, who require a distinct set of skills and knowledge to properly care for. The NIH provides educational materials to help caregivers learn what to do and expect.

     23. Alzheimer’s Association Caregiver Center     

The Alzheimer’s Association is one of the leading authorities on the disease. Their website provides a wealth of information on caring for Alzheimer’s patients based on up-to-date research on the subject.

     24. American Heart Association’s Resources for Caregivers

Heart disease is another common illness seniors face. The American Heart Association provides some educational tips for caregivers helping a loved one with heart disease.

     25. Cancer Caregivers Resources

The American Cancer Society likewise provides resources to loved ones of cancer patients to help provide the main information they need to take care of someone suffering from cancer.

     26. National Parkinson Foundation Caregiver’s Resources

The National Parkinson Foundation provides a number of resources to caregivers of seniors who have Parkinson’s. They also offer a helpline for caregivers that have questions.

     27. Caregiver’s Home Companion

The Caregiver’s Home Companion is a website that includes forums to connect caregivers to one another, and resources that cover many different aspects of caregiving, from the spiritual to the practical.

     28. Next Step in Care

Next Step in Care provides guides for caregivers that help them figure out how to work with health care providers to figure out the next step for their loved one when facing complicated decisions and transition periods.

     29. AARP’s Caregiver Resources

In addition to the many resources they provide for seniors, AARP also provides planning guides and other educational resources for the caregivers that help care for seniors.

     30. Video Caregiving

For those that prefer to learn by video rather than reading, Video Caregiving provides a number of films to help caregivers learn the skills they need.

--------
And one more thing before I go: not everyone is suited for caregiving. It shouldn't be a source of shame. Wrong job is what it is. Caregiving takes patience, understanding, and compassion for angry, frustrated, and low self-esteem patients who are your clients. If you don't have all three, and it's a family member, find an option in the list. If not, quit. Just because you want to have something to do and make money is not a reason for caregiving. Heed my words. They are spot on.

Portland and Pittsburgh: Tales of Two Very Different Cities

As a stroke survivor, I've moved around a lot though Portland, which is 3000 miles away from where I started, is the biggest leap. (https://stroketales.blogspot.com/2017/07/first-impressions-of-portland-oregon.html) I lived in Pittsburgh for over 3 years before coming to Portland. But except for the two cities starting with P and the vast number of bridges, the two cities are very much different. The first 5 examples that came to my mind immediately follow.

One of 1000s Pittsburgh gear

1. Everywhere you look, day or night, you will see at least one sports memorabilia in Pittsburgh--Pirates (baseball), Penguins (hockey), and/or Steelers (footballs). Pittsburgh is obsessed with sports. Bumper stickers and flags, t-shirts, sweatshirts, hats, and more abound. Portland is best known for the Trail Blazers (basketball) and the lesser known Timbers (soccer) and Pickles (baseball), the latter two because they're sort of minor league. Portland is hot on the Blazers, but no sports stuff anywhere to flaunt that I've seen.

And the debate goes on

2. In Pittsburgh, everything was placed in plastic bags when I went shopping. So I was shocked, even though in retrospect I shouldn't have been, that Portland only uses mostly paper. Portland is esoteric in the area of the environment whereas Pittsburgh, originally a blue-collar town known for its steel mills, isn't concerned mostly at all. The debate, plastic vs paper, goes on. Paper bags take more energy to manufacture than plastic, even though paper bags are easier to recycle, and so forth. So the one thing you see in Portland is the re-usable shopping bag; not so much in Pittsburgh.
 

Pittsburghese, anyone?

3. Pittsburghese and Portlandese are very different aberrations, reflecting the culture thereof, or not. You decide for yourself.

(If you listen to Jack Pearson, played by Milo Ventimiglia in the acclaimed "This is Us" which takes place in Pittsburgh, he gets those expressions perfectly said). Going to Portland made me say to myself, a couple of times, you're not in Kansas anymore.

Ten examples follow for each.

Pittsburgh:

Jagoff = Jerk
Sprinkles = Jimmies
Yinz = You 
Stillers = Steelers
Nebby = Nosy
Coort = Quart
Lah-see = Lousy
In-ur-es-tin = Interesting
Hahs = House
Dahn-tahn = Downtown

Portland:
Brewmoo = relating to any number of theaters that serve beer
The mountain is out = It's a nice day
Spendy = Expensive
I'm going to Freddies = Local store Fred Meyers and Portland's version of Target
The Couve = Nickname for Vancouver, Washington, which is just north of Portland
Stumptown = Originally another nickname for Portland for all the loggers who once lived there
Nordies = Short for Nordstrom’s, a major upscale retail store located downtown and in a few area malls
Puddletown = Nickname for Portland because of all the rainfall it receives
PillHill = The hill that houses OHSU, the teaching hospital, Dorenbeckers (children’s hospital) and the VA Hospital
Stillers = Steelers, the beloved football team

The long row of carts

4. The food carts in Pittsburgh are mainly around the college campuses and downtown. Young adults who frequent them on college campuses mostly can handle the greasy concoctions like pizza, Chinese, and burgers that come from there. Everyone else usually takes Pepto-Bismol or facsimile. In Portland, however, the trucks are a cut above, dedicated to serving, in each individual truck, food like Asian Fusion, intricate wraps, a wide assortment of bubble tea, and Voodoo doughnuts, for example. They are parked in clumps, 15 to 20 food trucks, in many locations that aren't around college campuses or downtown only and, sometimes, they are parked in the middle of nowhere. But Portlanders know where they are. Throngs of them frequent the carts wherever the carts are.

Jackpot: Beard AND man-bun

5. The guys that sport beards in Pittsburgh, for the most part, keep them groomed. But not in Portland. The north westerners apparently don't give a flyin' frig about their beards and are more interested in having one at all than not. Thus, you see unkemptness beard-wise all over Portland. Young and old have beards in hippie-like fashion that are straggly and nearly halfway down the chest. The other things you see all over the place in Portland are man-buns. In order to have a man-bum, the hair must be at least shoulder length in order to pull it up for a bun. Man-buns and ponytails are different, the latter just gathered with a tie and once it's up, allowed to hang loose. Man-bans, IMO, are more sophisticated and skillful than a ponytail. In Pittsburgh, I hadn't seen one man bun ever. But in Portland, they're all over the place.


I was a fan of Pittsburgh, but the scenery is better in Portland, and the food for that matter. And the man-buns, of course.

The Solar Eclipse and Danger to Your Eyes: Shameless Scam or Ultimate Truth?

Hoo-hah! Everybody loves a party, or an excuse for one. So the Solar Eclipse is coming on Monday, August 21, and there's parties galore, even a festival in Solartown, Oregon, The campsites are all sold out. And as one Press Release says, "There is nothing like the spectacular phenomena of a Total Solar Eclipse. One part beautiful, one part mystical, and one part mathematical, a Total Solar Eclipse is an experience that inspires the mind, body, and spirit and demonstrates the elegant nature of our cosmos." Sounds pot-i-ful.

No one ever died of smoking pot. I imagine the festival will have its share. Pot is legal in the state of Oregon, so it would a shame if everybody who smokes a lot falls asleep and misses the eclipse. Just sayin'.

Anyway, everyone is buying specially designed glasses to watch it, unless they are foolish and wait to see what happens. More on that later.

The total eclipse can be seen first in Oregon where I live all the way to South Carolina along the trajectory listed below (all others, partial). Oregon, where there's a 3-hour time difference with the East coast, will get an influx of people watching it because that's where it starts.

Oregon has a problem with wildfires, so the eclipse may not be seen if wildfires are around. Check the weather, too, across the trajectory for your viewing. If Mother Nature doesn't cooperate, cloudy skies would keep you from the fascination and you'll have to wait until 2045 to see it again.



And now the eye danger. All of my ophthalmologist and optician friends agree: If you don't wear the special glasses, and I'm not talking sunglasses, you will damage the sensitive retina.

"Filters that meet the ISO 12312-2 standard reduce the sun's brightness to a safe and comfortable level, like that of a full moon, and block harmful ultraviolet and infrared radiation as well," said Rick Fienberg of the American Astronomical Society. "Solar filters that meet this standard are about 100,000 times darker than ordinary sunglasses, and sunglasses don't block infrared radiation." 

If you look through the glasses and the sun is too stark, hazy, out of focus, or if you can see household lights, the glasses are not safe. The only thing you should be able to see is the sun itself through a safe solar filter.

There it is. The conclusion? Not a scam. It's real. Don't be a daredevil. Wear the solar filter glasses. Otherwise, goodbye, vision. Unless you get lucky, which nobody is in this case.

Botox for Spasticity Didn't Work? Try Dysport If You Like

This article caught my eye: Ibsen Pharmaceuticals developed a drug for spasticity--Dysport. Huh! I thought the only drug in the world to stop spasticity was BOTOX. (Maybe all caps the way BOTOX is often written swayed my opinion).

Anyway, the US Food and Drug Administration (FDA) recently approved the use of Dysport for the treatment of upper and lower limb spasticity to reduce the spasms in adult patients and only lower limb spasticity in children under 18. (Physical and occupational therapists call it tone, but everybody has tone. What therapists are really saying is abnormal tone, resulting in spasms or spasticity).

Clinical improvement with Dysport can happen after a week, with duration in improvement as long as 20 weeks before another injection is needed. Dysport can be used for spasticity in stroke patients and well as other traumatic brain injuries.

Cynthia Schwalm, Chief Executive Officer, Ipsen Biopharmaceuticals, Inc. says, “Spasticity can have a profound impact on adult patients and their abilities to perform the most basic daily tasks. Ipsen is committed to providing these patients, their caregivers and physicians with a comprehensive support offering including Dysport."

The FDA approval was based in part on clinical trials conducted in over 600 patients. The medicine was first registered in the United Kingdom in 1990 for other uses and is licensed in more than 80 countries in eight different indications, with over 1,300 peer-reviewed publications.

Known as the Phase III pivotal study, 238 adult patients with required upper limb spasticity participated in the study for up to one year. The Phase III data showed that those treated with Dysport demonstrated statistically significant improvement in muscle tone measured by the Modified Ashworth Scale (MAS), the scale originally used to test multiple sclerosis patients. 

"At Week 4," the report says, "both doses of Dysport  (500 units and 1000 units) significantly reduced muscle tone as measured by MAS in all primary target muscle groups,,,with approximately 3 out of 4 patients responding to Dysport. The most frequently reported adverse reactions (≥2%) are urinary tract infection, nasopharyngitis, muscular weakness, musculoskeletal pain, dizziness, fall and depression." (No comparison with Botox was accomplished drug-to-drug in any of the studies, but Botox has mostly the same adverse side effects).

Spasms for me go on for as much as two hours in a row, every 18 seconds, even now, 8 years after my stroke. When I had Botox injected in my leg 2 years after the stroke, I felt little relief, and that relief was short-lived. I was injected twice by the same doctor. When time 3 occurred, I couldn't get an appointment and had to see another doctor in the same facility. I always had the same questions, but when I asked the new doctor if Botox was dangerous, he said, "You could die." I jumped off the table, headed for the door, and left, but he was right.

"Dysport and all botulinum toxin products," the report goes on to say, "have a 'Boxed Warning' which states that the effects of the botulinum toxin may spread from the area of injection to other areas of the body, causing symptoms similar to those of botulism. Those symptoms include swallowing and breathing difficulties that can be life-threatening." (Gulp!)

If you do try Dysport, report any negative side effects of the drug or, for that matter, any prescription drugs to the FDA. (Doctors get free pills or injections from the drug companies known as samples, so you can't depend on the docs to report side effects. The docs are "wined and dined" by the drug companies to get the docs to prescribe their product. The drug companies and the docs have a co-dependency and you are a virtual guinea pig. So you have to be your own advocate). Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088.

First Impressions of Portland, Oregon, aka Welcome to Whackyville

I am in Portland, OR, now, which is a new beginning for me (at close to the big 70) because I have always lived and worked in or near Philadelphia, PA, which is 3000 miles from where I am now. But here I am, close to one of my sons in Whackyville. C'mon. Don't take offense, Portland residents. I like it here. Besides, Whackyville is good for the economy. Some examples are in order.

I just missed the 11th annual World Naked Bike Ride last month with almost 10,000 participants where cyclists gathered in a park an hour before the ride, shedding garments. There are 75 cities around the globe participating in 20 countries, but Portland has the most participants. Someone interviewed in the crowd said the naked people were protesting oil dependency. Thus, bikes are big here. Real big.

And then there's the pot. Cannabis is legal to buy here. I saw 3 pot stores on my way from the airport to my son's house. 

These are the rules: 

• Gifting of recreational marijuana to adults 21 and older is allowed, so long as the amount gifted falls within the personal possession limits and no financial consideration with the transfer. 
• Driving under the influence of intoxicants (DUII) refers to operating a motor vehicle while intoxicated or drugged, including impairment from the use of marijuana. 
• Adults 21 and older can use recreational marijuana at home or on private property. You can’t use recreational marijuana in public places. Public places are places to which the general public has access. This includes, but is not limited to: common areas in apartments and hotels; highways and streets; schools; parks and playgrounds; premises used for public passenger transportation (such as bus stops); and amusement parks.    
• You can’t buy marijuana in another state and bring it into Oregon, nor can you take it from Oregon across state lines. That includes to and from Washington and California where recreational marijuana is also legal. Taking marijuana across state lines is a federal offense.

Old Dirty Bastard

Ever hear of Voodoo Doughnuts? They have their own website--voodoodoughnut.com. One person told me that on the weekends, a lengthy line exists around the block in downtown Portland for anybody wanting a Voodoo Doughnut. The only other place they're sold is Denver (where recreational pot is allowed, too. Just sayin'. Munchies, anyone? Anyone?) They have the regular kinds like glazed and powdered, and then the other kinds, like Old Dirty Bastard, Grape Ape, Gay Bar, Tex-Ass, Cock-N-Balls, Memphis Mafia. Hey. Don't even try to guess. Go to the site!

Then there is the Summer Fair presented by the Oregon Cannabis Association (I should stop giggling and fit in like I'm from here), and the Mermaid Parade to celebrate water, and to quote the advertisement, "and the living culture of professional mermaid entertainers [mermaid entertainers--really?] now thriving in Oregon and throughout the Northwest who help to bring the magic and mythology of water myths to people everywhere," and 

the majority of natives don't use any umbrellas when it's pouring. If they don't have a hood, they just get wet. Really sopping wet. One Portlander said in Reddit, "The argument against umbrellas in Portland is that the heaviest rain here often comes in sideways with a lot of gusty wind. At those times an umbrella 1) won't offer very much protection 2) might get blown inside-out 3) could be a hazard to other pedestrians as it gets blown around." OK, then. Frizzies for me.

I'm going to get immersed in Portland culture, besides going to the naked thing next year, having some weed, and eating a Voodoo doughnut after munchies set in. I'm re-inventing myself. Peace out.

ALERT: Millennials Are Prime Candidates for Stroke, Too

Who's known as Generation Y or Echo Boomers, born between 1980-2000, totally immersed in a world of digital technology, the largest generation in western history since the1930s, were the number one reason why Barack Obama won the Democratic nomination during the primary season, focus on larger societal needs rather than individual ones, are mostly liberals, favor the legalization of weed and same-sex marriage, are non-religious, impatient, and adventurous?

Answer: Welcome to the world of Millennials. 

Oh. One more thing. More Millennials are having strokes. 

So if you're one of the millennials, put down your damn iPad or iPhone or whatever techie-toy you use and read this f***ing post. If you don't read it, and that goes for parents and relatives and friends of millennials, that's just pure stupidity.

An analysis of Millennial strokes in Scientific American, reported by Dina Fine Maron one month ago, finds this trend differs, depending on where one resides and depicted in the graph below. The South has most; the West has least. Big cities has most; rural areas has least. 

Yes, it's true. A growing body of research indicates strokes among U.S. millennials—ages 18 to 34—have climbed significantly in a little more than the last decade.

The investigation used data from the U.S. Department of Health and Human Services’ Agency for Healthcare Research and Quality (AHRQ) and discovered the hospital stroke victims' discharge data increased from 2003 to 2012.

Furthermore, a study published earlier this year in JAMA Neurology concluded that there was a 32 percent uptick in women stroke survivors in the 18- to 34-year-old range and a 15 percent spike for men in the same range from 2003 to 2012. 

With Scientific American's analysis, they decided to research further to investigate whether the stroke trend differed by areas.

Ralph Sacco, president of the American Academy of Neurology, said, “There has been mounting evidence from different studies suggesting that even though the incidence and mortality of stroke is on the decline, the rates may not be dropping quite as much—and even [may be] increasing—among younger populations. The reasons for these trends are not entirely clear but there are concerns about obesity, diabetes and physical inactivity having a greater impact in younger stroke victims.” Drug use, he said, may be another factor.

MRA of a brain bleed

Moran reported earlier analysis from stroke expert Mary George and colleagues at the Center Disease Control and Prevention found stroke risk factors such as obesity, smoking and hypertension are escalating among younger adults. 

“I think this data is consistent with other data, and so whenever you have replication consistency across different data sets we begin to take it seriously,” Sacco adds. “I think the fact that we see this trend across all regions, and that we see the amount of relative increase for hospitalizations rising for stroke, is alarming.”

In 2012, Dr. Brett Kissela, professor and chair of the Department of Neurology and Rehabilitation Medicine at the University of Cincinnati, specializes in factors that influence stroke outcome, including diabetes and drug use among the younger adult population. The study was supported by the National Institutes of Health.

"The rising trend found in our study is of great concern for public health because strokes in younger people translate to greater lifetime disability," said Kissela. He added that "younger adults should see a doctor regularly to monitor their overall health and risk for stroke and heart disease.”

That said, if you know any millennials, share this post with them, providing an opportunity for them to stay healthy.  Stroke is a bitch. Take it from somebody who surely knows.

...And More: The Tales of a Stroke Patient Is Expanding

In a dialog between Rebecca (who overlooked her husband's birthday and who's pregnant with triplets, in the famed This Is Us, the second season coming in September on NBC) and a liquor store owner, Teddy:

Teddy:     Hi.

Rebecca: Hi. I need to make a fancy chocolate almond cake as fast as humanly possible.

Teddy:     Ok.

Rebecca:  So I'm going to need butter, sugar, flour, almonds, and semi-sweet chocolate.

Teddy:      M'am. This is a liquor store.

Rebecca:  I know. But the sign said Liquor and More. So where's the more?

Rebecca, on the advice of Teddy, buys a banana-nut muffin instead and Twinkies to squeeze out the insides. So the liquor store "and more" is exactly what this store is.

Babies and More, Mufflers and More, Signs and More. The "and More" is used like et cetera, but a small number of people (I'm being kind here) may not understand et cetera, coming from Latin which nobody speaks anymore except clerics but good for a higher score on the SATs, an expression that is used in English to mean "and other similar things."

But everybody understands "and More." So I'm changing the original title of my blog from "The Tales of a Stroke Patient" to read "The Tales of a Stroke Patient and More." Yes, I have opinions with most of my brain left. I started a second blog, "As Joyce Hoffman Sees It," and then realized later the "and More" tacked onto the original title would be just fine, allowing me to write about anything, like Donald, energy, Donald, abortion, Donald, refugees, Donald, taxes, Donald, marijuana, um, et cetera.

I'm delighted to inspire and educate folks with my posts about strokes, but I want more. And so do you. So every once in a while, I'll write something that has nothing to do with strokes. Where's the more? You may be looking at it soon.

Stem Cell Research, Part 2, aka Who Knew!

When I wrote the first stem cell research post (http://stroketales.blogspot.com/2013/03/stem-cells-embryonic-and-otherwise-aka.html), I was skeptical. The Big Maybe Not, I said. But I am less so now. Most of the scamsters and shysters who claimed to have stem cells have been arrested or are purposely missing. There's something afoot and it means possible dis-ability for so many of us who are brain injured.

The most recent news came in June of this year from the 15th annual International Society for Stem Cell Research (ISSCR) meeting in Boston. The group included more than 4,000 stem cell scientists, bioethicists, clinicians, and industry professionals from over 50 countries who discussed the latest discoveries and technologies within the field, and how they are advancing regenerative medicine, including stem cells and cancer, disease modeling and organogenesis, gene editing and gene therapy, and potential breakthrough therapies currently being tested in clinical trials.

Said ISSCR president Sally Temple, “Discoveries are moving forward quickly, with developments that are changing the way we view and treat disease. That has tremendous implications, not only for scientists, but also for regulatory bodies, industry, and patients.” 

In addition, prior to the meeting on June 13, a Public Symposium organized by the Harvard Stem Cell Institute (HSCI), was held as well in Boston. It was advertised as “Innovation, Incubation, Investment: The Landscape of Stem Cell Research in Boston,” and featured local leaders in the stem cell community.
 
Then about one year ago, Sonia Coontz, who had a stroke in 2011, recovered her right side in a Stanford clinical study in 2016. Injecting human, adult stem cells directly into her brain, along with other chronic stroke patients, proved not only safe but effective in restoring motor function. 

Now 36, Coontz, said, “My right arm wasn’t working at all. It felt like it was almost dead. My right leg worked, but not well. I used a wheelchair a lot.”

After her surgery, "they woke up,” she said of her limbs. The promising results set the stage for an expanded trial of the procedure now getting underway. Dr. Gary Steinberg, who has more than 15 years’ worth of experience in work with stem cell therapies for neurological indications, is the research paper’s lead and senior author.

“This was just a single trial, and a small one,” cautioned Steinberg, who led the 18-patient trial. 

“It was designed primarily to test the procedure’s safety. But patients improved by several standard measures, and their improvement was not only statistically significant, but clinically meaningful. Their ability to move around has recovered visibly. That’s unprecedented. At six months out from a stroke, you don’t expect to see any further recovery,” said Steinberg.

There's more. A recent study involved donor stem cells grown in the lab and delivered through an IV to stroke patients. Dr. Ken Uchino, a stroke neurologist at The Cleveland Clinic, said, “The stem cells are believed to change the immune response of the body to the stroke. And it will turn down the immune response so there is a better healing environment.” 

The study involved 129 patients, half of whom got the stem cells, and half the placebo. The study discovered the patients who got the cells within 36 hours of stroke onset had less disability and more mobility after stroke.

Check out new studies at www.clinicaltrials.gov. Put "stem cells" in the search bar and away you go. 

The Big Maybe Not has turned into The Big Maybe So.

If You Don't Exactly Hear, You May Be Exactly Screwed

So this is what happened two days ago. I went to the market with my aide and (I approved) her two-year-old, adorable, blue-eyed Sophie because Katie, her mother, didn't have a babysitter. We don't go shopping when she rarely brings Sophie, but she is so behaved, a problem was the furthest thing from my mind.

Sophie walked (let me be clear--WALKED) around the gargantuan Giant Eagle supermarket. We got the needed items, hung the bags on the back of the wheelchair with me in it, and Sophie started to rub her eyes, a sure sign that she would take a nap once she returned to the car.

We left the store and arrived at the car, and Katie said, as she always says, "Don't get up from the wheelchair. The bags are heavy and I have to remove them first." And then added, for a first time, "I'm going to put Sophie in her car seat before I take the bags off the wheelchair."

The parking lot was a noisy one, plus an anxious driver with a muffler issue stopped a few feet away to get the spot Katie would soon vacate. Katie opened the trunk, and then went around to the other side of the car to place Sophie in her car seat. (See the problem yet?)

I didn't accurately hear those instructions. I heard Katie speak, but the words were indistinct, just like the adults in a Peanuts movie. (Wah wah wah). The trunk was open and I was texting on my phone, so I figured, albeit erroneously, that the bags were already in the trunk, and I stood up. As I arose, the wheelchair went flying backwards from the heavy bags and I went along with it, landing on my right side and hitting my arm, neck, and head on the blacktop. When I stood up, assisted by a stranger and Katie (the crowd, fifteen strong, had gathered), I saw the blood on my hand and realized I was cut and my finger was out of the joint.

It wasn't Sophie's fault. It wasn't Katie's fault. It was my fault. The hearing aid had diminished slowly over time, and I was trying to stretch out the shelf life to get a new one in Portland. (If you follow the blog, you know that I'm moving there). 

The rest is all a blur. I went to the Emergency Room and the nurse put on that neck brace pictured above, just in case I had injured my spine and head. I was tested via CT scan and the results were negative. But the X-ray showed a fracture in my finger. The doctor said I should follow up with an orthopedic surgeon (I went and a splint was put on my hand, just days away from the Portland trip).

So, all of this is to say, yeah, hearing is an issue and not one of the usual top five reasons that a person gets injured in and around the home. Slips and falls, often-silent choking, adverse effects of medication, hazardous fire, and severe cuts are the ones most "perennially" written about. But hearing is on my list. 

If you can't hear accurately, let's say, the fire alarm or a siren or the alarm clock or, in my case, instructions, then bad things might happen. Very. Bad. Things. Is your hearing ok? If you have doubts, I suggest you get a hearing test from an audiologist and maybe you'll be surprised at the results.

Want to Join a Class Action Lawsuit about Faulty IVC Filters? Kirkendall Dwyer is Handling Them.

In America, litigation rules. Some people sue frivolously, like a woman who was burnt by McDonald's coffee that was too darn hot (she won) or a man who sued a beach-front hotel after he was knocked over by a wave (he lost). But the majority of the lawsuits are worthwhile and about personal injury. Take my IVC (inferior vena cava) filter which came from my DVT (deep vein thombosis), for example. But first, a little background.

Two weeks before I had my stroke on that fateful day, April 8, 2009, I called my friend, an orthopedic surgeon, to ask about my foot and leg pain.

"If your pain continues, and it goes up to your knee, and even higher, go to the Emergency Room," he said.

The pain was going strong, and before it got up to my knee, I went to the ER. The ER doctor did some blood tests and an ultrasound, and he came back with the results.

"You have blood clots in both legs. I'm going to have to admit you." I was in New Jersey at that time.

All right, I said to my inner psyche, don't panic. The blood clots don't mean a thing. I took the day off from work. [I found out for sure 3 years later that Avelox, an antibiotic known as the family of  fluoroquinolones, could produce blood clots]. I was in the hospital for a few days and went back to the law firm, Cozen O'Connor in Philadelphia, where I was a Sr. Technical Trainer. The following week, I went to a hematologist in Philadelphia and he discovered my platelets were practically non-existent. But the trouble was nobody connected the dots. The doctors operated in a void.

When I had the stroke, though I was unconscious, it was told to me later by my son that I had blood clots in every extremity (arms and legs). So the doctor at Capital Health located in Trenton, NJ, put a Greenfield filter in my groin [there are many kinds of filters that all do the same thing] to catch the clots from going up to my lungs, heart, and brain. Resembling a windblown, useless umbrella, this is what it looks like. (Greenfield filters were recalled in 2005. A Greenfield filter was implanted in me in 2009. Was the defect solved? I don't know, and that right there is an issue, too).

I was unconscious for 8 days, and when I awoke, my sons, the youngest playing the guitar at my bedside, and my partner (whom I left after 17 years, but that is another story for another time) were waiting. It's all in the book. (The Tales of a Stroke Patient by yours truly, available at Amazon -- https://www.amazon.com/Tales-Stroke-Patient-Joyce-Hoffman/dp/1479712493/ref=sr_1_1?ie=UTF8&qid=1475474432&sr=8-1&keywords=the+tales+of+a+stroke+patient)

Anyway, now 8 years later, I joined a class action lawsuit a few years ago sponsored by Kirkendall Dwyer. The reason I joined the suit was I read a lot of cases where the filters moved and it got me antsy. I received a letter from Kirkendall Dwyer in November 2016 and here is what it said:

------------------

Dear Ms. Hoffman,

As you recall, Kirkendall Dwyer LLP represents you in a lawsuit related to your IVC Filter device. I am writing to inform you that we received the medical records in your case. They show that on 04/08/2009, you were implanted with the VENA TECH manufactured by BBRAUN. We are pursuing a claim related to that product.

It is very important that we have a current treatment history. Please let us know if a have had any of the following Injuries after the IVC Filter placement. [I had a pulmonary embolism, #4 on Rafael's list, a couple of years ago]

     1) Perforation of the inferior vena cava or any other organ
     2) Migration of the IVC Filter Implant
     3) Fractured, broken or shattered IVC Filter
     4) Embolization (Blood Clots)
     5) Ischemic Stroke (Stroke caused by a blood clot to the brain)
     6) Tilting or slanting of the IVC Filter
     7) Heart or Lung Injury caused by the IVC Filter

If you continue to have problems associated with the IVC Filter, then please schedule an appointment as soon as possible to have your problems evaluated. During your appointment, please be thorough in explaining your complications.

If you have any questions, then please do not hesitate to call the office.

Kind regards,

Rafael Pena Costa Jr.
IVC Filter Case Manager
(214)271-4027, Ext 7048

RCosta@KirkendallDwyer.com

------------------

Since I couldn't travel to Kirkendall Dwyer which is in Houston and Dallas, TX, Rafael kept in touch with me by phone. Then last Friday, I received a letter that was a report from the radiologist who was hired by the lawyer as an expert that said there was a perforation in my inferior vena cava [#1 on Rafael's list]. So I stopped doing the stationary bike until I saw a vascular surgeon who specializes, in part, in the treatment of disorders of the vascular systems, that is the body's arteries and veins.

I saw the surgeon three days later and I showed him the letter from Rafael and the report from the attorney's expert radiologist that said, in essence, my vein had been perforated by the filter and that warned the surgeon that an operation to remove the filter was needless.

"Forget that you have it," said the surgeon. "The filter is supposed to be permanent and there is no way to remove it because the filter and your vein are one." Then he pointed to the letter and showed me where the radiologist referred to my filter and my vein as occluded (dictionary definition says "taken into and retained in another substance." That's where filter and vein are one come into play.

"You may die on the operating table. Besides, 89% of the people have perforated veins from the filters." His eyes kept darting back to the lawyer's letter.

I believe the lawyer's letter and the radiologist's report are what colored the surgeon's thinking. Doctors hate lawyers' letters.

A few medical professionals in Pittsburgh know about the lawsuit. Word travels fast in the Steel City. But I'm going out to Portland, OR, next month to live near one of my sons. I'll see a doctor in Portland, or Puddleton as it's sometimes called [all that rain--get it?], without mentioning the lawyer. That way, I'll get a straight answer. Word of mouth will probably die when it crosses the Rockies.

So call Kirkendall Dwyer if you have experienced any of the items on Rafael's list. What do you have to lose? I'll answer that. Nothing!

(RETRACTION: The attorney's aide of Kirkendall Dwyer called me last night to tell me he appreciated the post, but the filter was a BBraun, not a Greenfield. He said they don't handle Greenfield filter cases because they don't cause that many problems. However, the BBraun is right up there causing problems as stated in Rafael's list above. Even though the filters do the same thing--catch blood clots, my error came about because that filter information is the only thing I was told from the start of the stroke. So Greenfield filter, thumbs up; BBraun filter, thumbs down).