Stroke Recovery Continues Over Nineteen Years After Stroke

Therapies for my stroke recovery will continue to be an important part of the rest of my life.  Like exercise is an important part of anyone’s life who wants to be healthy. My stroke caused paralysis, as well as, muscle weakness and loss of function.  Stroke recovery therapy for me focuses on strengthening muscles, relearning how to do things (move) and adapting the “how to” with my body’s current post stroke condition.

Movement Doesn’t Require Feeling 

Stroke Recovery - Respiratory Treatment
Respiratory Therapy Treatment

My original diagnosis of Locked in Syndrome and the treatment pathway the doctors and therapists placed me in determined my treatment plan. The treatment consisted of passive range of motion exercises, use of the movement I had retained (facial muscles -eyebrow lift and mouthing of words) and lacked anything which encouraged new independent movement. For the six months I was in a rehabilitation hospital I never tried to move, because I couldn’t feel anything. I didn’t think movement was possible.  A week before I was released to go home my regular occupational therapist was off. her replacement for the day, Dale, asked me to try to move my finger. Since my admission to the hospital and initial assessment I hadn’t been asked to attempt to move. To my surprise I wiggled a finger I couldn’t feel. I told my regular therapist when she returned, but I couldn’t repeat the movement. She didn’t believe me. 

Consequently, I learned that a muscle can become fatigued and may not be able to repeat an action more than once in a day, by the next day, next week or for even longer periods of time. In short, stroke recovery is comprised of a lot of slow incremental progress and setbacks. Whenever I’m sick I tend to regress and sometimes I lose all progress or strength. Two steps forward and one step back characterized and still characterizes my stroke recovery. When I work my butt off to strengthen a muscle and regain an ability only to get sick and lose all progress it’s easy to become disheartened. Depression and discouragement battle with determination, faith and hope.

Physical Therapy -Picture of Lee Kennedy wearing many hats
Lee Kennedy – Jack of All Trades

None of the medical professionals had believed I moved my finger, because I failed to repeat the action. In the past, I had mistakenly judged a spasm to be voluntary movement.  Thank God, my mom had witnessed it. So, after we left the hospital my real rehabilitation began. My mom was my drill sergeant, respiratory therapist, creative rehab specialist, and nurse and most days she was all of them at once and more. The brain scans, diagnoses, doctors, therapists and medical books hadn’t discouraged her.

Mom’s Always Right 

When I first began to recover body movement I was eager to work on my rehabilitation for my stroke recovery under the direction of my mom in any way possible. After four years past of lung, occupational and physical therapy eight hours a day, I burned out. So, I refused to continue any therapy. Beginning in 2002 I chose to do only passive range of motion and lung treatments and nothing more until 2015. The constant therapy had been a mistake. Instead adoption of a more reasonable schedule would have resulted in a willingness to take a break and continue in a month or so. I decided against devoting any more time to therapy. Continued attempts to gain more movement or function weren’t worth it to me. After all, what good would it do me, if I wasn’t living? I had sufficient function of my left arm and hand to type and use a computer mouse. It was enough. I was tired of having no life. In short, I wanted to find a way to earn an income and interact with the world around me. The computer offered a window to the world and something that I could do independently.

Stroke Therapy physical therapist Eric Stout (Summer 2017)
Eric Stout Physical Therapist & Jessica Kennedy (2017)

 In 2015 I noticed my arm, hand grip and even voice had lost strength. Mom had warned me when I halted the therapies I would regret it. To her credit she didn’t say, “I told you so.” when proven right.  So, I enlisted the help of a speech therapist who taught me some exercises to strengthen my voice. See previous post to learn how ventilator-dependent, Jessica Kennedy speaks ,http://www.thequadspot.com/how-ventilator-dependent-jessica-kennedy-is-able-to-speak/Then I worked with a physical therapist, Eric Stout, who showed me ways to strengthen my arm and trained me to drive a new wheelchair. Stroke recovery requires a patient’s willingness to follow an exercise regime with a therapist and the drive and commitment to work toward goals in the absence of a therapist on their own.  After a therapy session and exercise, I am worn out. As a matter of fact, it’s not unusual for me to be unable to scratch my nose or change television channels with the remote control by the end of the day. However, there was a day I couldn’t move my hand or arm at all. I am thankful that most of the time I can. Things that used to come easily, without much thought and effort, are difficult and sometimes impossible.

For example, it took six months before I moved anything, but my eyes and facial muscles. Then it was a tiny wiggle of my index finger. After nine months I was able to move my head left and right.

Stroke recovery continues today. When I stopped therapy, I regressed. Like a weight lifter loses the ability to lift heavy weights if they quit lifting, I lost strength. In contrast, I wasn’t worried about lifting heavy weights, but struggled to lift my arm or grip the television remote control. Consequently, I learned the hard way [as usual because I’m so hard headed] I will lose function, strength and flexibility if I am not diligent about exercise and stretches to prevent muscle contractures. The temptation to skip therapy remains, because maintenance of my blog and YouTube channel and preparation of blog posts takes me longer periods of time to complete than in my pre-stroke days. When my occupational, physical and lung treatment therapies, bath and morning routine is completed the time is between noon and 1:00. My day begins at 6:00 a.m.  If I skip the therapies I can get more accomplished.  I don’t always do all my therapy. Some days I just want to be left alone, but that’s the exception.  It must be, because it takes too much time and effort to regain what I lose if I get lax. A day off occasionally, is okay and probably good for my mental health, but I don’t want to lose the ground I’ve covered. It takes too long to get it back.

 Please feel free to comment and ask questions. Watch for the upcoming video that shows some of my current physical therapy. 

 

In 2018 Learn to Laugh at Yourself and Through Life’s Up & Downs

 Laughing emoji - Laugh

In 2018 learn to laugh at yourself and your circumstances. It’s no great accomplishment to let your hardships stamp a map of wrinkles on your face, turn your hair gray and embitter your heart. On the contrary if you can discover the humor amid adversity it takes some of the sting out of the situation.

 

You might not see anything about a stroke and becoming a ventilator-dependent quadriplegic as a reason to laugh, but the warped sense of humor God gave me gifted me  with that ability. When I started to laugh instead of cry, my spirit began to heal and joy found me again. The ability to laugh has been such a blessing. I don’t always laugh at least not initially, but eventually I find a way to poke fun at what upsets me.

 

Choose to Laugh Instead of Cry

Although it might seem overly simple, it works. Here’s an example.

I have to allow caregivers to bathe me. Since I am uncomfortable when I’m nude I make jokes to alleviate my embarrassment. Part of my embarrassment comes from the fact, I’m extremely flat chested. So, I usually will tell a new caregiver that I had a breast reduction and my doctor went overboard. This statement is accompanied by a serious unsmiling face and delivered in a matter of fact and sober manner.

Here’s another example. I don’t think anyone that’s paralyzed and requires assistance to go to the bathroom looks forward to it or finds it enjoyable. For the first couple years I cried through my bowel program. My dependence on others was hard enough, but I eventually got used to my dependence on others.

I try not to dwell on it for long or discuss it, because it makes me uncomfortable and embarrasses me even after 19 years.  At some point in the future I will discuss the process and accompanying feelings, but not today.

Each morning I start the day with insertion of a suppository. As a result, my face turns red and blotchy. Try to imagine someone you have nurse with pointing finger say Good morning behind dismayed and red-facedknown less than a week doing this. It’s embarrassing. It never fails that a new caregiver will comment. “Your face is so red. ”

My response is “What color would your face turn, if I stuck my finger up your butt first thing in the morning?”  The tension lessens, and everyone usually laughs. On a purely objective level, I realize it is just something that must happen. I suppose a person can grow used to anything over time.

A New Year Resolution

French emoji with beret , a glass of wine and baget Try to take yourself less seriously in 2018 and laugh more. Sometimes life’s hard, and you may get frustrated and over time discouraged. I resolve this year to turn to God immediately and pray when I feel overwhelmed instead of despairing first. and to laugh and enjoy life more fully and thankfully.

Do you have a different method to cope when faced with hardships? Please feel free to share, comment or ask questions.

 

 

Grace Experienced By Jessica Kennedy

God’s Grace
A thorn is placed in Paul’s side. He asks God to remove it three times.

My thorn was ventilator-dependence and quadriplegia. In contrast to Paul, I rejected that His grace was sufficient and asked far more than three times for the thorn to be removed.

God's Will & Grace or Jessica's Will?

Upon waking from a coma, a ventilator-dependent quadriplegic, the acceptance of God’s grace never crossed my mind. A friend shared the verse with me. Sudden, I couldn’t move, speak or breathe on my own, but I was supposed to believe God's grace was sufficient. Everything in me resisted His gift of grace. Grace didn't feel like much of a gift, grace felt more like a curse.

In the first place, I had prayed to be healed if that wasn't God's will I didn't want His will . I wanted mine. Since He didn't completely heal me, I searched for an answer to the question uppermost in my mind, "Why?". Why wouldn't He just heal me? The question of "Why?" wasn't answered as I want!ed. In the light of the fact God wasn't doing what I wanted when I wanted, I decided I'd better figure out what the meaning of grace was, because if that was the extent of what God would do I needed to understand it.

Humor comparison to Grace

"Analyzing humor is like dissecting a frog. Few people are interested and the frog dies of it."

Grace. What is grace?

At Christianity.com grace is defined as "... the love of God shown to the unlovely; the peace of God given to the restless; the unmerited favor of God." or as quoted from B.G. Warfield “Grace is free sovereign favor to the ill-deserving.” Grace can be defined, but grace like humor is so much more than a definition can impart. Unless and until grace is experienced it can't be truly understood. After examination of the bible for scripture about Jesus and His gift of grace and love, I witnessed how wondrous His grace is and why it's sufficient. 
 

picture of Mark Twain Humor comparison to Grace

"“Explaining humor is a lot like dissecting a frog, you learn a lot in the process, but in the end you kill it.”

God Sees Things From the End to the Beginning

Jessica Kennedy Turner Falls, OK 2002
Jessica Kennedy Turner Falls, OK 2002

If I had been given a choice when I regained consciousness whether I wanted to spend the rest of my life hooked to machines, I'd have chosen death. I never would have imagined the blessings of the days, months and years to come. Given the choice today I would choose life, because His grace is sufficient. I have seen the effect my disabilities and story have had on people. So, now I can glory in my disabilities, because His strength is made perfect in my weakness. God sees things from the end to the beginning and knows how I will influence others, because of my disabilities. If I can share Christ's gift of salvation with even one person and they are saved, my suffering will have been worth it, because I'll dance, walk and sing in heaven for eternity.

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God’s Gift of Grace as Experienced by Jessica Kennedy

How Ventilator-Dependent Jessica Kennedy is Able to Speak

How Ventilator-Dependent Jessica Kennedy Speaks

Can you imagine always having to wait a few minutes before you can speak? Learn about how people who are ventilator-dependent like Jessica Kennedy struggle to speak.

Many people can’t speak or speak clearly due to a stroke, a debilitating illness, birth defect, T B I (traumatic brain injury) or S C I (spinal cord injury). The ability to speak isn’t effortless for them but takes concentration and focus. For Jessica Kennedy to speak she must constantly think about and adjust the number of syllables she says with the amount of air supplied by her ventilator or risk running out of air in the middle of a word. To speak to an audience for an hour or more isn’t easy. It takes a lot of energy and concentration. “It’s a good thing I enjoy the challenge of speaking professionally. Since I became a ventilator – dependent quadriplegic life has provided endless challenges. Speaking is just one.

At Age 26, She Had to Learn to Speak Again

Jessica at Baylor Rehabilitation Hospital 1998
Jessica at Baylor Rehabilitation Hospital 1998

Because of the brain stem stroke and herniation Jessica couldn’t breathe on her own and thus she was ventilator-dependent. To explain it in simple terms, the stroke hit her breathing center and she no longer breathed involuntarily. In addition, due to her inflated cuff on her tracheostomy tube she was unable to speak audibly. At first, she only mouthed words. Since the stroke affected her control of the mouth muscles it was difficult to read her lips. It was like reading the lips of someone with a mouth full of marbles.

A speech therapist helped her strengthen her mouth muscles during the 6 months she was in the rehabilitation hospital. Jessica detested the simple exercises prescribed by the speech therapist, but did them diligently. A huge part of rehabilitation and recovery is dependent on a positive mental attitude and willingness to do the prescribed exercises regardless of how stupid you look or feel as you do them. Her dislike seldom affected her willingness to run through them several times a day. When tempted to forego the exercises, she was surrounded by family that encouraged her and insisted. They gave her no choice.

Rehabilitation and Recovery

To speak a person uses Phrenic Nerve and Diaphragm
Phrenic Nerve and Diaphragm

She left the hospital and worked with a home health respiratory therapist, who discovered Jessica had minimal diaphragm movement. To begin with, Jessica was only able to contract her diaphragm twice a day and often the muscle became fatigued and the following day might not be able to move at all. At those times she grew discouraged and felt like giving up, but her family fought to keep her motivated and refused to allow her to quit. A strong support system was key to her recovery.

Daily they worked to strengthen the muscle. Initially she attempted to move her diaphragm without any added weight and it was hardly perceptible, but over time it strengthened, and weight was added. A Kleenex box, books and a dozen different items of various weights from around the house were placed on her stomach and she contracted her diaphragm against the resistant weights. When she could consistently move her diaphragm, she began to work with pressure support ventilation to speak, but it took time and a lot of practice to coordinate breathing and speaking.

How to Speak: The Specifics

ventilator must be adjusted for Jessica to speak
ventilator

On PSV (pressure support ventilation) the ventilator’s BPM (breaths per minute or breath rate) is changed from eight to zero. If Jessica forgets to contract her diaphragm to trigger the ventilator to give her a breath her ventilator will not supply any air. Consequently, she’ll pass out and her caregivers must ventilate her manually. While she speaks someone must monitor her closely. Due to that fact, Jessica can’t relax while her ventilator is on PSV and her cuff is lowered, she spends most of the time with her ventilator on it’s normal settings and her cuff inflated.

 

The Bivona tracheostomy tube’s cuff must be lowered for Jessica to speak aloud. Otherwise air doesn’t pass over her vocal chords However, with the lowered cuff the air will simply pour out of her mouth unless she controls the air flow and closes her epiglottis. This forces the air into her lungs. “When my cuff and ventilator are adjusted for me to speak I have to remember to stop talking and allow air to go into my lungs. My family and caregivers must remind me to stop speaking and let air go into my lungs because if I forget, I turn blue and pass out. For the most part, they have noticed in time and reminded me to stop talking and breathe.”

Warning Signs

At all times, when her equipment is adjusted for speech, she must guard against distractions and forgetting to just breathe. Dizziness or an alarm are warnings that tell her she needs air. There have been instances she concentrated on something and just forgot to breathe. It may be difficult to imagine, but just think about what you do when straining to do something. Do you hold your breath? She tends to do that. So, when she speaks she must be hyper aware of how often she has taken a breath, paused her speech to allow air to travel to her lungs and oxygenate her body and appear to speak without showing how hard her brain is working otherwise, to watch her speak wouldn’t be enjoyable, but distressing, for each speech she performs, she spends hours of preparation with these factors and more in mind.

Jessica Kennedy Turner Falls, OK 2002
Jessica Kennedy Turner Falls, OK 2002

Jessica’s Gift

Something as simple as the ability to speak can no longer be taken for granted . Jessica never anticipated, at the age of 26, she would have a stroke, become a quadriplegic nor dependent on life support for the rest of her time on earth. For a little under a year after her stroke, she couldn’t talk aloud and only mouthed words. (The doctors had believed Jessica had Locked in Syndrome. A person with that condition can’t move anything but their eyes nor speak.) “I prayed God would heal me. For a long time, I didn’t think he had answered my prayer, but He answered in His time. He healed my spirit, left arm, hand, head, and ability to speak, and not my paralysis, but eternity walking, dancing and singing in heaven is worth the time I spend disabled on earth. Who knows by sharing my story and Christ’s gift of salvation someone else might open their hearts to Christ.”

Jessica Kennedy’s Journey to Accepting Being Disabled

 

Happiness regardless of being disabled required accepting my disabilities.  Discovery of who I was after the stroke and acceptance of my disabilities was a long journey. I couldn’t have done it without God and His promise of eternal salvation. Prior to my stroke, I believed in God, but that was about it. Even Satan believes there’s a God and Jesus Christ. I actively seek Him and try to follow Him now by studying my bible and His teachings. Being disabled would be intolerable if there was no God.  In a word, I would have felt cheated, bitter and angry. With Jesus Christ and His gift of eternal salvation and a promise of a new heavenly body being disabled on earth will be worth the gift to come.

 

Embroidered Antique Chairs
Embroidered Antique Chairs

Being disabled, I was dependent, depressed and ashamed of what I had become. My life hadn’t been perfect before my stroke, but it was busy with work and visits with family and friends. Weekends I hunted for antiques at garage sales, thrift and antique stores around North Central Texas with my sister, Yestraday.  After we arrived home with our treasures, I repaired and refinished the furniture and embroidered fabric to recover cushions and pillows.  I couldn’t sit still and was always occupied with a project. Rarely was I idle.

 

 

Being Disabled

The stroke left me a ventilator-dependent quadriplegic: unable to move, breathe or speak aloud. In short, I couldn’t control my body or anything in my environment. The inactivity resulted in my abrasive manner. Angry at the world, self-pity filled me.

 

wheelchair means ventilators, braces & skin care, etcBeing Disabled & Dependent

Dependent on others to complete my morning ritual of bath, stoma care, bowel program, lung treatment and physical therapy, exasperated me. I wanted to do things for myself, but that wasn’t an option anymore. For years I attempted to control my caregiver’s assistance as they performed their job duties. Until I learned to accept that they had their own pace and way of doing things, I created a stressful environment, I micro managed their every step of my care. My caregiver’s were more relaxed, happier and open to suggestions about my care since I stopped. Accustomed to waking at 6:00 a.m., bathed, hair washed, dried, and rolled, makeup applied and a 45-minute commute to work, the wait is unbearable. It takes approximately five hours a day to get me ready each morning. I still must bite my tongue not to hurry them when it takes longer.

 

depressed

Being Disabled & Depressed

I lost the ability to do almost everything and as a result, I only thought about what I had lost and the CAN’Ts consumed me; can’t walk, can’t eat or drink by mouth, can’t breathe, can’t scratch my nose, etc.  Wallowing in self-pity, life was depressing and boring. Television didn’t fulfill me.

 

Being Disabled &Ashamed

On a caregiver’s first day of work they will see and wash every inch of my body including my most intimate places. I was extremely self-conscious and uncomfortable when naked in front of these virtual strangers. Not to mention, assisting me in a bowel program. For the first couple of years unable to go to the bathroom unassisted, I wept through the daily bowel program, but became less self-conscious about being nude. If you’re modest, I don’t recommend quadriplegia or do recommend you get over being modest fast.

Whenever I have had bladder spasms (especially when my body has passed a kidney stone) I have urinated from my urethra and not through my catheter and as this occurs I wet the bed. Due to a stomach flu or other illness, on a handful of occasions I have pooped my pants when out and up in my chair. Logically I knew this was no reason to be ashamed, but convincing my heart was another matter. Emotionally, I equated myself less than an infant, because sooner or later they become toilet trained. I never will be.  I felt like a thing, less than human, a waste of space and worthless.

 

 Books An Excellent  Diversion

Books Fuel Imagination
Books Fuel Imagination

A caregiver told me about the NLS National Library Service for the blind and physically handicapped https://www.loc.gov/nls. I  read two to three books a week before my stroke. I’d missed books, because I couldn’t hold a book or see well enough to read anymore. Books had been one of my favorite forms of entertainment. Even though reading books was preferable to listening to them, after I became disabled, I had no choice. Eventually I grew accustomed to listening to audio books and the narrators at the NLS are as good as the professional narrators. I began to listen to books during the time my caregivers got me ready each day. It helped pass the time and for me to be less self-conscious during my bath and bowel program. In short, tune out and go somewhere else in my imagination. Since my caregivers enjoyed listening to books as they worked, we selected them together. Currently I will listen to a historical fiction book with Kathy and when Lisa takes over I switch to a dystopia novel. Then when I am on my own I listen to my own book.  So, I listen to books about five hours in the morning and two to three hours at night. Therefore, I have at least 3 plots to keep straight in my head. at any given time, but books although an excellent diversion failed to fulfill me. My life lacked purpose and felt empty.

Being Disabled & Depression Lifted

Aspen Healthcare LogoBooks kept me busy but I needed something more than entertainment.  I felt useless and worthless. I thought I couldn’t do anything of value. My respiratory therapist and close friend, Susy Jouett, of Aspen Healthcare http://www.aspenhealthcareservices.com/ asked if I would visit a patient of hers that was lonely and would enjoy a visit. Desperate for a diversion to break up my day I accepted her invitation. I learned Connie was dying from A.L.S. on a ventilator and unable to move or speak. Her only movement was eye blinks. We “spoke” using an alphabet chart and eye blinks. For the first 6 months after my stroke I couldn’t speak and used an alphabet chart to communicate. On the first visit, we spoke for several hours and kept in touch. As a result, Connie and I grew close and my depression lifted, because I was doing something positive just by being a friend. Hence, Connie’s spirits changed for the better, because she could communicate with someone that shared similar experiences and understood. I found that by caring for someone else my focus shifted from POOR ME and onto a way to help others and felt worthwhile. That Christmas I ran a teddy bear drive, Joni & Friends logodelivered them to patients along with Christian books donated by Joni and Friends http://www.joniandfriends.org, and spent time with those patients at a rehabilitation hospital. Then I spoke frequently to their rehabilitation support group for patients.  Later I spoke to respiratory therapists at continuing education classes, groups of doctors and nurses, disabled people, and Christian and civic organizations, As I shared my story and experiences, I educated, entertained, and inspired audiences of all abilities and backgrounds. For more information on my speeches click here. 

 

A Warped Sense of Humor

Thank God, I have a warped sense of humor, because it’s why I can laugh instead of cry. Now when I have a bladder spasm and wet myself I jokingly scold my mother, “It’s pretty sad that by age 46 you haven’t managed to potty train me. ” I look for the humor in every situation. For example, each day I get a suppository.

It started my day in an embarrassing way. I dreaded it. Because of inserting the suppository, my face and patches on my body turn red and blotchy. A caregiver commented on how red my face turned. I asked straight faced, “What color would your face turn if I stuck my finger up your butt?” Then I winked and smiled. Almost every day I laugh at the things that used to make me cry. When my emotions are raw and I can’t find the humor in my situation I pray. So, when I can laugh and smile, I thank God, I can laugh at myself. My life isn’t easy, but is anyone’s life? I have discovered that helping others and prayer are sure fire ways to end my depression. Try it and even if it doesn’t help you, it will be helping someone else.

 

 

 

 

Go Fund Me Fundraiser Tips

Picture of a road
“All you need is the plan, the road map and the courage to press on to your destination.” by Earl Nightingale

A successful Go Fund Me campaign takes preparation and hard work. I am by no means an expert, but I have learned that with determination, computer and the internet anything can be learned. First and foremost, do your homework, because anything worth doing is worth doing well. I want everything NOW or sooner, but if someone jumps out and starts a Go Fund Me Campaign with no forethought or preparation I have no one to blame, but myself if it fails. Some suggest taking three months to plan. I didn’t do that. It was a HUGE mistake. The “Help Jessica Get a Handicap Van” Go Fund Me fundraiser raised $3,377 from June 1, 2017 to August 14, 2017. Pretty impressive, but the goal is $65,000 to pay for a handicap van.

 

 

 

Generate a Detailed Plan for your Go Fund Me Fundraiser 

  • Get a calendar and plan weekly events to keep your fundraiser trending. The more likes, comments and shares you get and visits to your Go Fund Me Fundraiser page the more exposure it gets. and possibility it will go viral. Cross your fingers.

 

  • Pre plan social media posts and write emails to possible donors based on assigned categories of your email contacts. The categories are hot, warm & cold and dependent on the likelihood they’ll donate., because I didn’t make time to write posts and emails before, no pre plan at all, my Go Fund Me Fundraiser didn’t raise more money. Prepare press releases to send to radio and television stations throughout your fundraiser that highlight your pre planned events.Yet another reason for the planned calendar events is so you have items to announce in your press releases. (If you don’t know how to write a press release search the internet.)
  • Graphic of tabby cat winking
    I admit I Know that I’m not perfect. It’s our secret. Don’t tell my family!

    Since it is your plan you should take an honest look at yourself, your strengths and weaknesses. In the light of them, when you make your plan ask yourself how will you overcome your short comings and use your strengths?

 

 

 

  • I am impatient. and try to do everything myself. My philosophy had always been that if I wanted something done right, I needed to do it myself. Since my stroke I have learned I can’t do it ALL anymore. Delegating and trusting people to complete tasks is essential. I need help, now more than ever, but I’ve always had a hard time asking for it, accepting it and accepting that I need it. I often realize I need assistance, but only after I feel overwhelmed, inadequate and break down in tears. Seems like I would have learned by now. Maybe by the time I’m 50?

 

Kathy Menard and Jessica Kennedy
Kathy Menard and Jessica Kennedy
  • So, to guard against my tendency to do everything on my own I accepted my caregiver, Kathy Menard’s offer to be in charge. She will never know how thankful I am and how hard I have fought to refrain from taking control back. I’M A CONTROL FREAK!

 

 

 

  • Assemble a team of people motivated to launch the Go Fund Me campaign and propel it to success. Brainstorm ideas for events to increase exposure and generate donations. Read the three posts on financial resources Part 1, Part 2 and Part 3 for some ideas..

 

  • Consider making videos. Wondershare Filmora  is $39.99 and easy to use. Anything you need to know about Filmora can be learned in tutorials on YouTube.

 

  • Keep the main Go Fund Me fundraiser video short and tell a compelling story.

 

  • Take a look at my “Help Jessica Get a Handicap Van” page on my website and my Go Fund Me fundraiser Page on the Go Fund Me website  . I didn’t made a main Go Fund Me fundraiser video, but I have made others. In hindsight, having videos ready to post would be best. I had to learn the program and make the videos after my Go Fund Me Fundraiser began.

 

  • Offer something to your donors to give incentives for them to donate. I haven’t come up with a gift for all donors, but for donors of $25 or more their names are entered into a prize drawing.

https://youtu.be/tNcAT0Sd6Qo

  • Thank your donors promptly on social media, as well as, privately in an email. I made a video thanking my donors and posted it on social media.

 

  • Try to learn from my mistakes so that your Go Fund Me Fundraiser will be a success.

Brain stem Stroke or Infarction and Herniation

 

picture of brain stem
Medulla Oblongata and Pons are Breathing centers of the Brain

Late Tuesday night I had a brain stem stroke or infarction and herniation then a pulmonary arrest from increased ICP. Then Wednesday around 5:00 am my general practitioner (doctor) arrived for the first time. He approved the transfer to Medical City of Dallas.

The neurosurgeon and neurologist on staff at that hospital immediately performed a surgery and inserted a ventriculoperitoneal, VP Shunt to relieve the pressure from the accumulation of fluid, hydrocephalus in my brain. The three doctors that God used to save my life were Alan Shulkin, pulmonologist, Worthy Warnack, neurologist and Richard Naftalis, neurosurgeon. Nurses, doctors, an excellent chaplain, therapists and everyone at Medical City of Dallas were and are beyond excellent. Since then I have had several surgeries and stayed in ICU for over a dozen separate hospitalizations. My experiences with Medical City of Dallas over the last eighteen years has given me complete confidence in the hospital and I refuse to go to any other hospital for inpatient care.

 

Buckshot Effect on the Brain:  Brain Stem Stroke or Infarction and Herniation

 Brain Stem Stroke or Infarction and Herniation Strikes the Brain Like Buckshot from a Shotgun graphic of x a ray of an injury from a shotgun blast.

A stroke is an interruption of the blood supply to the brain. Usually a #stroke strikes the brain in one of the lobes (Frontal, Temporal, Parietal or Occipital).  Each lobe is responsible for different functions. The problems from a stroke can be more or less anticipated by the area struck as well as, the steps needed for recovery afterwards. An infarction is a stroke that occurs in the brain stem which is the area my stroke hit. Brain stem herniation occurs when the brain shifts from its normal position in the skull also my injury. The doctor described it to me in simple terms. In short, my brain slammed down into my spinal cord (the herniation) and the stroke occurred simultaneously. The infarction and the herniation blasted my brain in an unpredictable pattern like buckshot from a shotgun. Buckshot has many pellets that spray in an unpredictable pattern.

 (I have done my best to understand and research information about my condition and its causes. Please contact a medical professional for treatment and explanation, because I AM NOT A MEDICAL PROFESSIONAL far from it.) 

Is Anyone in There?

Glascow Coma scale chart to determine level of consciousness

The Glasgow Coma Scale is a scoring system used to evaluate someone’s level of consciousness. A score closer to the number three indicates a lower level of consciousness. Over the thirteen days in the coma my numbers fell until they reached a three and there was no sign of brain activity.

I never realized that someone might be somewhat responsive if they were in a coma. For example, my eyes were open in a dead stare, but I was otherwise unresponsive.  (After I went to the rehabilitation hospital, I saw a comatose patient with her eyes open. Every day they took her downstairs for to work with a physical therapist. I was shocked. Since I thought someone in a coma would be totally unresponsive and immobile.)

A Medical Mystery

Cartoon_detective_with_magnifying_glass_brain_stem_stroke_or_infarction

I was a mystery to doctors and therapists. They treated me passively and expected nothing from me. After six months I was scheduled for discharge from the rehabilitation hospital. The week before I went home my regular occupational therapist, OT was out sick and the therapist that replaced her asked me to try and move my finger. I couldn’t feel so how could I move?  My mom said, “Don’t ask her to do that, because she can’t. You will just depress her.”  Thank God she ignored my mom. For the first time since I woke up from the coma I moved. It was only a tiny movement of my right index finger, but it was a start.

Then the next day my regular OT returned and mom told her about the movement.  I wasn’t able to repeat it for two days and she didn’t believe it happened. She and my doctors thought it had been a muscle spasm or something, not true movement. In a future post I will share how my determined mother learned how to get me to move. It took over two years to regain movement in my left arm and hand. I am a published author and inspirational, educational and spiritual speaker.

 

Occupational and Physical Therapists

Hot Tip Message White board

My mother didn’t accept the research or recommended methods for recovery, because my brain stem stroke or infarction and herniation said I wouldn’t survive not to mention, recover in anyway. Mom tried anything she could think of to get me to move and when one thing didn’t work she tried another. I want to tell OT’s and PT’s always ask your patients to try. Usually a diagnosis is correct and the expected methods for recovery work.   Please ASK YOUR PATIENTS TO TRY, because if that therapist never asked I wouldn’t have known that it was possible.

 

SUPPLEMENTAL INFORMATION LINKS

 

Brain Stem Stroke

Hydrocephalus

Locked in-syndrome

Symptoms of Frontal, Temporal, Parietal and Occipital Strokes

Ventriculoperitoneal Shunt VP Shunt

What are the signs and symptoms of a stroke?

For more information on spinal meningitis visit Part 1 Bacterial Pneumococcal Meningitis and Part 2  Bacterial Pneumococcal Meningitis

Leave comments, questions or suggestions.  I love to hear from my blog readers. God bless and thanks for reading.

Part 2 Bacterial Pneumococcal Spinal Meningitis

Bacterial Spinal Meningitis

Bacterial spinal meningitis can cause symptoms such as seizures and coma as well as various complications, including brain damage, hearing loss, and learning disabilities.  Furthermore bacterial spinal meningitis occurs in 4,100 people a year in the USA and approximately 500 people die.

Risk Factors of Bacterial Spinal Meningitis

  • Age –  Children under five, pregnant women, people between the ages 18-25 and people over 60 are at risk of bacterial spinal meningitis.
  • People with transplants and on drugs that suppress the immune system are at risk of bacterial spinal meningitis.
  • People with depressed immune systems from illness like cancer, HIV, sickle cell anemia and diabetes medications or surgical procedures are also at risk of bacterial spinal meningitis.
  • Sinus, respiratory and ear infections or infections like these can worsen and turn into bacterial spinal meningitis.
  • Working with or around meningitis causing bacteria can also place people in danger.
  • People can be exposed to the disease that travel to the “meningitis belt” in sub-Saharan Africa in the dry season, or to Mecca during the Hajj and Umrah pilgrimage.

Dangers of ICP from Spinal Meningitis

Intracranial Hypertension Stages

As shown above the three stages of ICP can spiral down rapidly. The dangers of ICP Intracranial include seizures, stroke, brain damage and additionally even death.  #SpinalMeningitis increases ICP Intracranial Pressure, from the swollen meninges and increased amount of CSF cerebrospinal fluid.  Since bacterial spinal meningitis can cause a significant and rapid increase in both, it is important to monitor the ICP. The local hospital had no neurosurgeon and neurologist on staff to insert a device to monitor my ICP.

After two hours I lost consciousness and became comatose.  The ICU doctors were concerned, because I thrashed, moaned and panted. A doctor prescribed Morphine, because they believed I was in pain. I stopped panting moaning and thrashing. So, they assumed  (wrongly in my opinion) that I was better. A contraindication for Morphine is due to the fact it suppresses breathing. In short as I stopped panting and  couldn’t blow off the CO2 and caused my ICP to surge.

 

EMERGENCY PATIENT ASSESSMENT ABC

Emergency ABC Airway, Breathing and Circulation

 

Airway

  • Check the patient’s consciousness.
  • Check to make sure the patient’s airway is unobstructed and they can take a deep breath.
  • Assess patient’s mental acuity. Can they speak in full and coherent sentences?

Breathing

  • Look, listen and feel for the movement of air
  • Assess if the patient’s breathing process is sufficient in rate and volume passed?
  • Assess if the patient struggles to breathe (patient effort versus effectiveness).
  • Listen to the chest and assess the patient’s heart, lungs, and other organs and identify any differences from normal breathing. Normal breathing should sound like soft air movements; absent breath sounds is very bad; wheezes suggest broncho spasm; crackles and rales indicate pulmonary edema or infection.

Circulation

  • Examine for life- threatening hemorrhage
  • Assess perfusion (level of consciousness, skin color, pulse rate and blood pressure
  • Assess the pulse rate for regularity. What is the rate (15 seconds x 4), skin color, temperature, central and peripheral cap refill? (Perform the CRT Capillary Refill Test.)

In conclusion a neurosurgeon recognizes the signs of rising ICP. Incubation would have secured my airway and ability to breathe. (I am not a medical professional,  however a patient with any condition that involves brain swelling is treated in a tertiary hospital,because they have neurologists and  neurosurgeons  on staff. Instead I had a brain stem stroke infarct, herniation and pulmonary arrest.

Possible Long term Complications of Bacterial Spinal Meningitis
  • Brain damage of varying degrees
  • Seizures (I have had two caused from drug reactions eighteen years apart.)
  • Hearing loss (I am deaf in my left ear.)
  • Hydrocephalus is a condition that accumulates and grows and results in brain swelling. (The VP shunt prevents the buildup of fluid in my head.)
  • Subdural effusion (Since I no longer have infected meninges, I think that complication was removed.)

SUPPLEMENTARY INFORMATION LINKS 

See Part 1 Bacterial Pneumococcal Spinal Meningitis or next week’s blog post for information on brain stem stroke, infarct and herniation and coma.

 

 

 

 

 

 

Part 1 Bacterial Pneumococcal Spinal Meningitis

Chart_of_Spinal Meningitis Symptoms

Bacterial Spinal meningitis has symptoms similar to a cold, flu, or upper respiratory infection. Misdiagnosis of spinal meningitis may have deadly consequences. College freshman that live in dormitories are three times more likely to catch #SpinalMeningitis than young adults in the general population. Since three out of five adolescents that survive meningitis have significant physical and mental disabilities. In short meningitis is extremely dangerous. So, know the symptoms of meningitis and consider the vaccination for meningitis.

Ten Signs of Spinal Meningitis
  • Spike in temperature
  • Severe headache
  • Vomiting and extreme nausea
  • Muscle pain
  • Stiff and sore neck
  • Exhaustion and Dizziness
  • Skin Rash
  • Seizures
  • Light Sensitivity
  • Young children may show signs as shown above, but they might moan, resist being held or a bulging of their soft spot.
Time for a Spinal Tap (Lumbar Puncture)?

Lumbar puncture also called a spinal tap

In a manner of hours meningitis and /or spinal meningitis can be deadly. Since it is better safe than sorry, visit your doctor immediately. Request a lumbar puncture/spinal tap. (A #SpinalTap tests the CSF cerebrospinal fluid and measures its pressure .) Furthermore if your doctor doesn’t think the test is necessary and you remain concerned then insist.

Sometimes a Mother Knows Best Trust your intuition if Spinal meningitis is possible graphic that says mom knows best

After a diagnosis of Otis media (earache) on March Friday the 13th 1998 and then over the weekend growing sicker, my temperature higher, my eyes more light sensitive (light hurt my eyes.), a stiff and sore neck and I vomited for 24 hours on Sunday. Then I became dehydrated.   By Monday I was dizzy, unable to walk on my own, vomiting anything that I ate or drank, and with a high temperature.  Additionally a second misdiagnosis of the flu, a phenergan shot to stop the nausea and a warning not to worry if I was “out of it” I went home. My mother’s intuition told her it wasn’t just the flu.

The doctor missed the classic symptoms of spinal meningitis. That night I was incoherent, barely conscious  and cried out whenever I was moved. When I couldn’t move one minute, mom left the room and after she returned I was standing and running into a wall again and again. She acted immediately and rushed me to a local emergency room.

Don’t Hesitate – Get to the Emergency Room ASAP

Possible spinal meningitis is an emergency

As Mom and Dad rushed me into the emergency a nurse said, “I hope it isn’t spinal meningitis.” As the spinal tap was done the spinal fluid pressure registered off the chart. I was transferred into the ICU Intensive Care Unit. Within an hour I was comatose. Later the test results showed I had bacterial pneumococcal spinal meningitis. The hospital had no neurologist or neurosurgeon on staff and they had no adequate way to monitor my ICP Intracranial pressure. They refused three requests for transfer to a hospital in Dallas. My condition worsened. My temperature spiked and I thrashed in the hospital bed. Consequently a nurse tied me down to stop me from injuring myself.

 

Spinal Meningitis & the Blood Brain Barrier

cerebrospinal fluid definitively tests for spinal meningitis

At sixteen I had broken my nose and the doctors believed that break provided the pathway the bacterial infection from my ear followed to my brain ten years later.  In other words, the fluid from my ear failed to drain and traveled the path of least resistance, crossed the blood-brain barrier and infected the meninges (brain lining). The CSF, cerebrospinal fluid contains few WBCs, white blood cells to fight infection in the spinal cord and an infection grows unchecked. Bacterial spinal meningitis is extremely dangerous, because of this. Early treatment is essential to prevent severe disability or death.

 

 

SUPPLEMENTARY INFORMATION

Visit The Quad Spot next week for Spinal Meningitis Part 2. Share your comments, questions and suggestions. I enjoy hearing from my blog readers.

Thanks and God bless you!