Mar 15, 2018

My Sons, My Sons and the Makeshift Playroom

I have two sons. 

It was in the late 90s when a childless friend asked me during a hectic, weekday lunch, out of the blueish of blue, "Do you think I missed anything by not having kids?"

I answered him directly, "You love to travel. You went to places I didn't know exist. Travel with kids isn't always a possibility." 

But to myself, I silently shouted, "Hell, yes!" 

When my boys were young--one 7 and the other 2--I built them a playroom in our dingy basement with exposed pipes and a low ceiling, albeit high enough for them. Earl, my handyman, bought fluorescent lights and hangers that suspended them (that made the ceiling a teensy-bit lower). 

He bought a used television (he knew a guy) from which they would play video games. He installed a solid shelf for the television because boys will be boys. (If you don't know what that means, ask someone with two or more sons). 

He installed a heater/air conditioner unit because my thought process was it will be a 12-month to do. (And it was). He paneled part of it (my idea) and painted the rest (his idea) a soft yellow. And last, he installed a rug bought as a remnant but covered the whole floor because he made it fit. (The rug had 5 seams and Earl was good at math).

When it was finished, I brought the kids downstairs to see the outcome. It might have been put together cheaply, but it was the "playroom" and they loved it. 

Soon after, I built a 4x6 train set with fast-moving trains and railroad crossings and tiny people waiting on the platform in the playroom. Even though the planks of wood were wobbly (upper arm strength isn't my forte), it satisfied my sons.

I catered parties down in the playroom. Birthday parties, half-birthday parties, graduation parties starting with preschool. And more parties just for the sake of parties, many of them sleepovers. 

And then one by one, they left for college and stayed there after graduation in two respective different cities, both 6 hours from the house. That playroom existed as a monument to great, great times. 

It was followed by my bouts of depression and I asked the biggest question over and over again: Is that all there is? Sullen moods went on for a bunch of years until the youngest one graduated from college. And then a miracle happened a few years later. 

Both boys invited me, in the same year, as a guest visitor to see what they did for work. The older son, a Senior Programmer, showed me his workspace and explained in detail what he did to make things work and do what they did. My younger son, a Systems Administrator, showed me his workspace and what he did for networks, the lines of communication, to exist.

It was then I stopped thinking of them as children and moved on. 

My two sons were making a contribution and were self-sufficient. Isn't that what every parent wants? 

My stroke happened shortly after, and I knew, in all that despair, that my sons were going to be fine. Every time I thought that way, it led me to smile. 

Feb 11, 2018

Oxycodone and Me, a Failing (and Falling) Relationship

I last wrote the blog around Thanksgiving. And then I stopped altogether. Not because my ideas ran out. This post is now written and published, taking me 5 days in the process because of the pain when I sit too long. 

Let me give you the timeline and you'll see the consequences rather quickly, I imagine.

November 28: I had ear surgery because my eardrum had a hole in it caused by increasingly larger tubes to hear. The surgery was successful and the Oxycodone was effective to avoid the ear pain. 

November 28-December 5: I have a low tolerance for pain and took 7 to 9 Oxy tablets the first week to maintain my level of comfort. 

December 6-13: Then the second week 6 to 8. I wasn't a drug addict yet but on my way because, truth be told, because Oxycodone is a narcotic, and the rate of people taking taking too much narcotic(s) and dying is at epidemic proportions across all populations--the rich and poor, the professionals and the unemployed, the brain trusts and the brainless. Thus, I always asked myself, Am I in pain pain or is the pain tolerable? But I always opted for the Oxy because I had become chemically addicted. 

December 18: I was in the beginning of my third week taking Oxy as much as the second week when I fell to the floor around 1am and hit the end table next to my bed. I called my son to bring the key over to let the paramedics in on my iPhone, or what I call my lifeline. Then I called the paramedics and soon realized, in the post-surgery, perpetual state of Oxy-controlled haze, that I should go the hospital because I hit my head from a standing position and my ribs ached.

The ambulance, with sirens flashing, brought me to the hospital and while there, the ER doc ordered a CT scan of my head and X-rays. He gave me Tramadol and then Dilaudid to ease the pain. Then he gave me Oxycodone, the drug I had been taking following the ear surgery. The results of the tests showed my head wasn't affected, but 2, maybe 3 of my ribs were broken. The ribs take roughly 8 weeks to heal in a young person. Mine will take longer.

December 18-January 23: I ended up in the rehab facility across from the hospital. By the time I left the facility, I was down to 2 Oxycodones daily. Now I avoid them sometime because the pain is less and it is tolerable. I was chemically addicted and now 2 or less a day. I consider myself lucky, addicted-to-narcotics wise. 

January 23 to present: I returned home. My doc ordered 60 more Oxy just in case I still had ongoing pain. They're still waiting at the pharmacy. 

Of course, it was the Oxy that made me lose my balance and fall. I should have taken my time instead of going at my normal pace. But the Oxy operates differently. It makes the brain think it's invulnerable. 

Bottom line: I didn't read the brochure from the pharmacy that came with Oxycodone explaining the side effects like dizziness and the falling risk, but I should have. Oh, yeah. Lesson learned too late.

Nov 18, 2017

Go to Hell, Black Friday! aka The Top Ten Things I Am Thankful For On Thanksgiving

Right around this time of year, I often write about the misadventures of Black Friday, but I've finally learned not to participate because as a stroke survivor, I have fears of getting trampled or shot or assaulted, though it's not without basis, and one of so many stories.

Here's an example that occurred in 2011 as reported by the Huffington Post that game me pause. "A Black Friday shopper who collapsed while shopping at a Target store in West Virginia went almost unnoticed as customers continued to hunt for bargain deals. Walter Vance, a 61-year-old pharmacist who reportedly suffered from a prior heart condition, later died in the hospital. Witnesses say some shoppers ignored and even walked over the man’s body as they continued to shop." (Want to see more? Go to You might be Amazon shopping this time forever after!)

Anyway, this time I am posting about what I am thankful for on Thanksgiving (in that partially made-up story about the Pilgrims and the Indians whose land we stole even though the Indians were here first. Just sayin'). Make no mistake. Those who know know me realize that my life had given me tough times, some necessary detours, to get around the shit tossed my way, and this is not a time, meaning never, to elaborate. So here are the top ten things for me to be thankful for.

1.  I am grateful that I am alive. I was close to death 8-1/2 years ago, with no thanks to my hemorrhagic stroke, but here I am, getting up and dusting myself off when another piece of crap goes flying my way. Why am I here still? As my son says, you're too annoying to die. Granted, I am pushy, and with that comes the will to live. And positivity is a part of that attitude. But the overwhelming positive side, truth be told, is, if I wasn't laughing, I would be crying, making my baggy eyes even baggier. So every day, I make a concerted effort to wake up happy, even if I'm not, because who wants to waste all that energy on being negative. (Sorry for that, but that's what's called an interior rant, aka stream of consciousness).

2.  I am grateful for my 2 sons (who shall remain nameless) who give me thoughtful insights at times when I most need it. I give them thoughtful insights, too, with the response always being, "Mom! Don't try to FIX things! You're meddlesome!" They say I am controlling, and maybe I am, less so as the years go forward. But I know they heard me and will think about my words, often later taking my suggestions. I don't say a word.

3.  I am grateful that I learned about a year ago how to successfully (the operative word) tie my shoes one-handed. This procedure, too, was borne of necessity. There just isn't somebody around at times. Video forthcoming in YouTube.

4.  I am grateful that I learned that the best Personal Assistants anticipate my needs without my saying, "Could you...." The only two that showed up for the interview in Speedboat Coffee in Portland (I was expecting eight) were Norma and Joyce #2. I couldn't ask for better. I often say, "Thank you! Thank you! Thank you!" And I mean it.

5.  I am grateful that I learned, through my weekly sessions in counseling, not to live in the past. The sessions went on for about three years. I'm a slow learner, meaning I'm bright yet stubborn, and it took a lot of time for my counselor to break through the barrier of obstinance. Great work, T.

6.  I am grateful that I learned that I shop online just to make me feel better. Amazon Queen, they call me (not to be confused with Queen of the Amazons, a 1947 flick where a woman's husband has disappeared on an expedition into the jungle and she discovers that he has been captured by a savage female tribe. Campy, right?) After many procedures and an operation, not counting the two upcoming this month, what's wrong with a little shopping therapy! It's cheaper than "talk" therapy and at least I enjoy the online trip with laughter and total glee without ordering needlessly.

7.  I am grateful that I learned that I like a lot of plants. I mean, OBSESSIVELY A LOT! Around twenty in front of an almost floor to ceiling, three-paned window. I'm allergic to cats and I can't walk a dog, plus birds are too much work, and fish don't do it for me. But my maternal instincts are still in play, so I take care of plants. Rather, my Personal Assistant waters them, feeds them, and gathers errant leaves that have somehow fallen off. I just watch them, keeping a loving eye on the plants that never move.

8.  I am grateful that I learned about the iPhone, more than just texting and clicking an app to activate it. Katie and Jody in Pittsburgh taught me so much and now Norma and Joyce #2 have taken over. But I'm grateful also that I can text with one hand. Life is good. I got the iPhone later than most people. Read about it in my post from 2015:

9. I am grateful that I am never once bored in my apartment. Between writing, reading, and going to the refrigerator or kitchen cabinet to give me an excuse once an hour to stand and move, sometimes often without hunger, I keep busy. See my post about sitting too much:

10. I am grateful that I am not associated in any way with Donald Trump, Louis CK, Kevin Spacey, Harvey Weinstein, Bill Cosby, and scores of others, some of them still yet unknown, who brought shame upon themselves and anger, tears, and painful memories to their victims.

Now that we ended on a bad note, let's get back to the point. So tell me, dear reader, what are YOU thankful for? Write in the Comments section below. And Happy Thanksgiving!

Nov 12, 2017

Stroke Survivors Alert: The Way to Nap, aka It's Siesta Time!

Cornell University social psychologist James Maas coined the phrase "power nap." Just 15 or 20 minutes each day, sometimes twice a day if your day is long enough, will give you new-found energy. The reason for just 15 or 20 minutes is, any longer and it will make you groggy because your body will ultimately fall into deep sleep, and waking up during a deep sleep stage makes no sense.

The CDC says (if it isn't sleep disturbances such as nightmares from the medication or leg spasms that go on and on and, yes, on), more than one third of us are sleeping less than the recommended 7 to 9 hours each night.

"The power nap is a godsend," Dr. Maas added, sleep expert and past chair of the Psychology Department at Cornell University. "If you want to nap longer, make sure you have a solid 90 minutes. That'll allow you to get through a full sleep cycle, so by the time you wake up, you'll be back in the lighter stages of sleep and able to get up and actually feel refreshed." 

Dr. Rachel Salas, associate professor of neurology at Johns Hopkins, says, "Humans have a normal, natural dip, in our circadian rhythm, in the afternoon. That’s actually prime time to take a nap." Especially that post-lunch energy crash, she adds. 


Many experts say make the surroundings as dark as possible and use earplugs or even download a white noise app from your phone. Salas recommends an eye mask, too, because light can pass through the eyelids and still be disturbing your ability to take a nap.

The "coffee nap" has been talked about, too. The thinking is  if you drink a cup of coffee, set your alarm for 15 or 20 minutes, and take a power nap, the coffee takes about 20 minutes for caffeine to absorb into the body and then you're prepared to awake.

But Maas says, "Anybody with insomnia should never power nap, because it's going to make it worse. If you're having trouble going to sleep at night or have disruptive sleep where you're waking up in the middle of the night, the first thing you have to look at is if you've been napping during day." 

That recommendation also applies to sleep apnea. "Even a short nap can be unrefreshing if the quality of the sleep is disrupted by apnea," says Maas, who suggests seeing your doctor or a sleep specialist to rule out any underlying sleep disorders.

My problem was, I'd gotten into a bad habit. Because my Personal Assistant liked to sleep in, I started awakening at 11am and nodding off at 4am . Now I know better. Even if it's a 2-power nap day, I go to sleep at 11pm and arise at 7am. It was a hard transition getting to be an early riser--it took me about 3 weeks, but it was worth it. Carpe diem!

Oct 29, 2017

In the Hapless Wheelchair: Talk To Me When You're Talking To Me!

It was a recent HBO limited series called The Newsroom. Starring Jeff Daniels as Will McAvoy, a cantankerous insomniac and often narcissistic news anchor, he became involved in a scuffle with the producer (Thomas Sadowski) who calls Will a scumbag (not exactly his words--worse even), but the producer addressed Charlie Skinner (Sam Waterston), the news director, instead of Will, and Charlie said, "Talk to him when you're talking to him."

You got all that? It's very important that you do because of the next part of my story. If not, re-read.

So this is what happened yesterday, but it's sort of the same story that happens every time since I had the stroke. Sitting in the wheelchair doesn't help, but for long trips like Walmart or the supermarket, it's a necessity. A man or woman addresses my Personal Assistant, who travels with me because I am disabled and cannot drive. But this crystal clear-thinking woman--me--is ignored. Somehow, I become invisible, a ghost, or I am addressed in the third party.

The woman in Kohl's says, "What is it she's looking for?"

The man in Dollar Tree says, "Does she want red or blue?"

The teenager at the check-out window in Dunkin' Donuts says, "Should I make her tea iced or hot?"

"Hello," I said to myself silently. "I'm right here."

Ultimately, I got tired of the ghost role and this is how I empowered myself to do something. Big time.

I was in the Department of Motor Vehicles to inquire about the status of my identification card, aka my non-driver driver's license, which never arrived in the mail. We went up to the window and, because I was sitting in the wheelchair, my PA, who was eye level with the representative, asked about its whereabouts. The line behind us was extensive.

"I don't know. Let me check. Do you know when she applied?" asked the man.

"Three weeks ago," my PA said.

"Oh. Here it is. There was some quirk in the system and it wasn't sent out. Let me try again. Here's an Oregon certificate of residency [which I didn't have anymore] that should help her out if she's needing it. But she shouldn't. You're her driver, aren't you? And she's not going out of the country," he chuckled.

That was it. The crushing chuckle, bordering on guffaw. With the seemingly endless line in back of us, and with the wheelchair locked, I stood up straight at my full 5', 5", tired of being a ghost any longer. I turned a bit to broadcast the message.

"As a matter of fact, I am going out of the country," I lied and shouted with unabashed glee. "I'm the Goodwill Ambassador for Russian Diplomatic Affairs, appointed by the president himself. I'm leaving Friday," I said, taking the first country that came in my mind a la Trump and the title I made up as I went along, leaving the first 10 people behind me looking with a newfound admiration.

I added, "And by the way, talk to me when you're talking to me."

I sat down in the still-locked wheelchair, looking serious as ever. She unlocked my brakes and we turned and left. I was proud of my exuberant bullshit, even prouder that I advocated for myself. I willing to say that man learned a lesson. But then again, maybe not. Either way, I was overjoyed at my newfound readiness for extemporaneous speech which I didn't have ever after my stroke.

Oct 12, 2017

Hey, Hospital Administrators: Be the First to Revolutionize the Healthcare System for Stroke Survivors

I have thoughts, good ones at that, even though I had a hemorrhagic stroke and a portion of my brain cells died, never to appear again. That's all right. I compensate with little tricks that make me able to pretend I have the brain I was born with. 

But just talk, no action has been the status quo with stroke survivors, even though they contribute to one of the most disabling conditions. So I'm going to dare hospitals to do this because no hospital has done it before--revolutionize healthcare for stroke survivors. 

Hospital Administration

Greetings and with all due respect to hospital administrators. You have a difficult job, keeping the balance between doctors and nurses (some of whom are un-balanced) and the rest of the staff running smoothly, or just running. You aren't afraid of suggestions, are you? Well, then, use your smiling (albeit even if you don't feel like it) visages to approach this thought. 

Your facility could be "on the map" even more than it currently is. Be the hospital that stands out from the rest if you follow this one revolutionary suggestion for stroke survivors.

Before I tell you what "it" is, don't tell me you can't afford it because, truth be told, it's the missing piece. Doctors and RNs and the rest of the staff don't need perks, like the spreads you lay out for them, to keep them loyal. Just saving on food alone could make this idea more of a reality. If they really want to help people, and I'm sure most of them do, they'll stay put in your hospital. And your salary more than justifies my proposal. Ready?

When a stroke patient is admitted, have a psych team at the ready as soon as the patient is awake and comprehending, who reads the survivor some strict rules every day for at least a week BEFORE therapy starts. Crying will most likely happen. And that's all right. Emotional release.

Let me give you background on this thought because I've been thinking about it ever since I had my stroke eight and a half years ago. 

I was depressed (it went on for a year, less and less after that) and thus, at times, I was non-compliant. I was in a coma for 8 days and didn't talk for 5 weeks. And that was the easy part. What's the tough part, you ask? From the time I started talking, I would always ask questions at Bacharach Rehabilitation in Pomona, NJ, questions that could have been answered by the not-yet-formed psych team before I started therapy.

Instead, a question to the therapist: "What happens if I don't do leg lifts?" 
An answer from the therapist: "Just do them, ok?"
An answer from the not-yet-formed psych team: "Do everything the therapist says or else you'll be in a wheelchair longer."

A question to the nurse: "Why should I wear support stockings?"
An answer from the nurse: "Because you should."
An answer from the not-yet-formed psych team: "Do everything the nurses say or else you'd delay getting better."

A question to the doctor: "Do I really have to wear the eye patch for double vision?"
An answer from the  doctor: "Didn't you comprehend what I just told you?" 
An answer from the not-yet-formed psych team: "Do everything the doctors tell you because they're trained to give you good advice."

A psych team. For at least a week. Every day. Before therapy starts. To get stroke survivors ready to bust their asses and cooperate with the staff. Who's ready? Anyone? Anyone? Contact me through email and I'll go anywhere in the continental US to make this happen. 

I have thoughts indeed.

Sep 25, 2017

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 and having read, 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 Click on the link to learn more about it
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.

  1. 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.
  1. 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.

  1. 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.
  1. 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  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. 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.

Sep 14, 2017

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. ( 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.


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

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.

Aug 18, 2017

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.

Aug 12, 2017

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 or call 1-800-FDA-1088.