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We Hold A Secret

May 4, 2019 Stroke, stroke support, TBI Comments Off on We Hold A Secret
We Hold A Secret

We hold a secret that is beyond

the comprehension of mortals.

That the untested, the pain free

will never know.

The “unlucky” are those who existence

are stretched out as days, and months.

Who pass years into years without

looking up

 to see a sunset.

Or looking down

to see grass in bloom.

Beauty and the Muse fear the abuse of strong

And will rarely allow itself to be pursued.

Beauty and Muse have no fear of pain,

They are enraptured with pain.

They pause and lace pain with their feathers.

Beauty and the Muse  look on pain

With a touch

I am here to be seen,

To learn what I

Cannot comprehend.

Tom Schuck 2019

As a survivor of any life changing situation, such as brain injury, one often begins to view life in a whole new delicate, breathtaking manner.  Every day can no longer be viewed as another day to be accomplished, but each day is a collection of inspiring or violent moments.

Violent moments can be few, many, inconsistent or frequent.  They are the moments of Pain. The moments of searing, stabbing pain that raids every nerve ending, every bone, and every muscle.

The Inspirational moments are often the in-between times.  The brilliant sunlight that connects the storms of life.  They are the moments that allow one to pause, to toss out of their mind anything that is unpleasant, and focus only on the most pleasing, soothing, gentle thoughts.

It is the ability to engage with the Muses,  to enjoy the arts, to create and to experience life with little  care for the notice of others.

If the inspirational moments are nothing more than bridges between the darkest and most painful times, what are we to say?

We know “Time” and its singular companion: now.

Calling all VADers

April 9, 2019 Stroke, stroke support, TBI Comments Off on Calling all VADers
Calling all VADers

No, not Darth Vader, but LVADers and RVADers.   This is an growing epidemic of “stroke” among young people, striking teenagers and 40 year old fit and trim individuals alike.  One Facebook group, Vertebral Arterial Support Group has 2,200 members and is growing at the rate of nearly 30  per month.  Another group, Wallenburg or Lateral Medullary Syndrome Group, which covers one of the more painful, lasting effects of VAD currently has just over 350 members.

So what is VAD?  VAD stands for Vertebral Arterial Dissection.  Which means, “leading into the brain and brainstem, an Artery (not a Vein), has been (On the inside wall of the arterial) split open”.  This causes an “occlusion”, BAD thing, a stoppage of flow to the brain.

Mechanically, what happens is that the VAD occurs as an injury (TBI, Traumatic brain injury), often without the person knowing it.  A sudden twisting of the neck, and the inner lining of the artery tears away forming a pocket, behind which blood will seep through and clot.

http://www.vertebralarterialdissection.com

 

Sometimes attributed to side impact crashes, whiplash, Neck Adjustment, Dancing and floor sports where the technique of “spotting” is used. (Spotting in dance is when the dancer  maintains their head facing one direction, then turns their body as far as possible without moving their head, and finally rapidly whips their head 360 to original position).  Officially on medical charts, my LVAD (Left Arterial Vertebral Dissection) cause was listed as “Ballroom Dancing”.

The first symptom that an individual often reports is serious migraine-type headaches for weeks or months, even though the individual is not prone to headaches.

The second symptom, which can occur weeks or months afterwards, is that lining gives way in the artery and a rush of lining debris, clotted blood and blood rush into the medulla and brain. This is felt as a shock of dizziness and uneasiness.

In a fraction of second, the individual is suffering a complete stroke, the final symptom of the VAD.

For me, I was ballroom dancing when the stroke occurred.  I have no idea what I was doing when the original injury occurred. The good part was that my headaches finally ended.  But my long journey from victim to encouraging survivor was just beginning.  Typical of strokes was the loss of walking, speech, eye coordination, balance.  Atypical was the amount of awareness and cognitive abilities I maintained.  I was rattled, but not confused.  I lost the mental ability to add two numbers together, but not to understand the significance of numbers on a spreadsheet.

I was also surprised how quickly I progressed, but for VADers, this is also is not unusual. With good physical therapy, I was walking with a cane, communicating clearly, and even able to drive within 35 days.

All of these are normal progressions for the VADers.  Later, unfortunately, I was in the 40% that does not recover fully.   After 1 and ½ years, a series of setbacks and minor strokes reversed many of my advances, removing my ability to drive or work, and put me permanently walking with a cane.

I will discuss this in my next segment:  Lateral Medullary Syndrome.

Early Warning:

Migraines, like you never had them before.

 

Depression and Neurological Injuries

April 4, 2019 Stroke, stroke support, TBI Comments Off on Depression and Neurological Injuries
Depression and Neurological Injuries

Depression and Neurological Injuries

More doctors are using ketamine to treat severe depression in patients who haven't responded to other treatments.

I am not a Doctor. I am an Observer, a listener, and I share what I have gathered (without sharing confidences)

I have developed a unique view to depression, including my own depression, including that depression which leads to the handling of the artifacts of suicide, and again, including that which I ‘played’ with myself.

Depression, as a Neurological component IS a direct result of a dangerous CHEMICAL imbalance in the individual caused by partial or complete damage to those organs in the brain responsible to create and release those hormones and chemicals.  They cannot produced elsewhere in the brain or body and supplemental pharmaceuticals are required to supplement the lost activities performs by those organs.

But Depression also has an emotional aspect that I DO NOT believe that counseling the depression will provide relief.

This is because it is my observation that depression can be a symptom of LOSS (among other things).  And the survivor of Neurological Illness and Injury has a long list of Losses to think about.

My Top 5 “Losses”

1.       Dignity - often first lost when the individual finds themselves being “cared for”.

2.       Independence - often first lost by revoked or limited driving privileges, or being restricted to a wheel chair, etc.

3.       Role - Lost when the individual is removed from being the man or woman of the house, and becomes watches helplessly as others do their work

4.       Desirability -  occurs as you are encouraged just to watch rather than engage in social activities, and becomes more evident when those who care for you need a vacation from you

5.       Memory - Memory may or may not be damaged heavily in a typical injury or illness.

A Few practical solutions.

1.       “Care For” must be replaced with “Cared About”.  I make this distinction.  Cared for means that someone smiles, gives me pills, makes a meal, etc.  Cares about means that someone holds my hold, listens to me, reads or jokes.  Family members chose love over worry.

2.       The loss of Independence, which includes physical activities of independence, now need to be replaced with TRUST.

3.       Roles lost need to be replaced with Roles given.  What can I, the survivor, be given to be responsible for?

4.       Desirability – For family members and survivors, anytime that caring and being cared for becomes a ‘job’, a serious inquiry needs to made into home health care aides, or just talking about reducing tensions and expectations.

5.       Memories. Have several “old photographs” parties where the family discusses the photos and the events in each photo.

How Are You Feeling Today?

April 4, 2019 Stroke, stroke support, TBI Comments Off on How Are You Feeling Today?
How Are You Feeling Today?

I get this question answered every morning, and it is perhaps the most difficult to answer, if not the most profound question of the morning.  On one hand, I know that if I flippantly respond “fine”, “well”, then the other person expects me to act as if I feel well, when that is farthest from the truth. On the other hand, I know that NO ONE likes a complainer, and if I give too much detail, or take too much time describing how I really feel, it is the quickest way to shove people away from me.

Having been a pastor and counselor before my personal brain injury, has given me a little insight on how to govern myself and in the process, I believe that I have stumbled on two successful analogies to answer the question “How are you feeling today”, honestly and accurately.

 

First, I have found, so far, two primary types of overwhelming “Not doing well”, they are.

  1. Pain/dizziness
  2. Unable to muster energy

 

  • For Pain and dizziness, I first ask each person that will be asking me that question on a regular basis, spouse, family, close friends, doctors, etc., to imagine themselves the level of pain, dizziness, discomfort and general inability to think when they have a 100 degree fever.

 

Then I say “Now imagine yourself when you have a 102 degree fever, how would you feel; now 104 degree fever, now 106, now 108 fevers?”

 

After asking them to have these analogies fixed in their in heads, I tell them,  (This is my actual personal response) “My normal pain/dizziness NEVER drops below 102, that is what I cope with 24/7.  Right now, I am about xxx degrees, I don’t have a real fever, that’s just how you would feel if you were me.

 

  • Second.  For those with Energy swings,  tell the person is asking “How are you feeling this morning”, that you equate your daily energy level to someone living weights. Ask them to Imagine that could normally lift bench press 100 pounds.   Ask them to think how exhausted they would be if they hadn’t slept for days, and could barely lift 60.  But there is 100 pounds on the bar, and no one to help you to get it off.

That is the ‘crushing weight’ of energy loss that we go through.

 

Brain Injury / Stroke and the Loss of Emotions

September 8, 2018 Stroke, stroke support, TBI Comments Off on Brain Injury / Stroke and the Loss of Emotions
Brain Injury / Stroke and the Loss of Emotions
Brain Injury / Stroke and the loss of emotions. –
One of our vital brain centers that produce and regulate emotional responses is the amygdala. Precariously centered in the line of fire just above the Cerebellum, this tiny organ can be damaged irreversibly by brain injury stroke.
..
This can cause us to react with either strong out of control emotions, or with no emotions at all. Unfortunately, for too many, the effect appears to be strong emotions, such as depression, crying over any uncomfortable situation, expressions of anger or violent reactions.
..

Image credit: https://www.pinterest.com/pin/80361174579421561/

The medical solution, of course, is drug therapy to replace the actions of amygdala to regulate the emotions. Unfortunately, these drugs cannot discriminate like our old amygdala did, and more often than not, we are turned into emotional zombies, or very close to it.
Talk to your Doctor! You have right NOT to be an emotional zombie. There are many, many drugs they can select from that have varying power. Have them find the one that helps control your emotional outbursts, but does not make you a Zombie.
 
Every Day is Squirrel Appreciation Day

——————————————
More Squirrel-ly Than Ever,
Tom

OH HOW PAINFUL!

June 10, 2018 Stroke, stroke support, TBI Comments Off on OH HOW PAINFUL!

I cringe every time that I see canes and walkers adjusted to a height so that the victim of the adjustment (and here I will say victim), is in the obvious process of damaging themselves to the point of incurring osteoporosis.  I am talking about the too short syndrome.

 

OK, I am NOT a doctor, and have no medical background, but on this subject, I often wonder if medical industry has their heads in their books and are not looking at the patients.

 

When your cane is too short your spine is bent to one side as you walk.  Your opposite hip is thrust outward, away from the spine, and eventually tearing from spine.  Lower back pain, hip pain on the opposite  hip, and sciatica pain are natural result.

 

If you walk with a walker, or with two canes that are too short, and cause you to lean, you can see the obvious hunchback effect, which will result in upper back pain, middle back pain and spine pain, as well as permanently curved spine and bone spurs.

In this picture, the cane is too tall, and even though the woman is holding the cane with a bent arm, her left shoulder is still thrust painfully upward.

 

In these two pictures, the man has his walker adjusted to low, and is leaning forward, bending his spine, risking permanent a permanent curved spine. The lady to his right, has her walker adjusted corrected and is able to stand erect with a straight spine.

I’m not in favor on the absolute use of measurement based on hip point alone, because this does account for the various size of a persons core (from hip to shoulder) or the length of their of their arms.  All three of these measurements must be taken into account to properly size a mobility device.

 

The easiest way is to have the user with their back straight and their legs only slightly relaxed. A cane should be handed to the person, and be fitted so that shoulder is not pushed up, nor do they bend right or left to hold it when the cane is positioned about 5” in front of or behind their body.

A person using a walker should also stand with a straight spine and arms positioned out about 6” from the body.  The person should be able to the hold the cane in a relaxed position as the lady in the above picture.

 

Not Quite 50 First Dates…

May 15, 2018 Stroke, stroke support, TBI Comments Off on Not Quite 50 First Dates…
Not Quite 50 First Dates…

As a survivor of Brain Injury and Stroke, I know that there have been many losses to my long term memory,  as well as events, feelings and people not getting posted into short term memory as they should.

Normally, my days are busy enough that I don’t give it a passing thought, but when I do slow down and try to reminisce about my past, I sometimes find that there is no past to reminisce about.

I don’t remember my children growing up, they are now in their 30’s, but what happened to their childhood, pre-teens and teen years?  I look for pictures.  Fortunately I was a photo hound.  There are hundreds of pictures capturing wonderful moments, but how do the dots connects to each other?

I finally confessed to my wife, “I love you so much, I just wish that I could remember you, I have to fall in love with love with you all over so many times every month, because I keep forgetting my emotional attachments.

Why am writing this?

First reason, is why I write anything: to help anyone going through similar circumstances know that they are not alone, and that, even as I am experiencing this, I refuse to any answer except for “There must be more”.

Don’t write yourself off.

What more can you expect in the face of memory loss?  One of my favorite movies before my brain injury was 50 First Dates.  A young woman with a severe brain injury has 24 hour memory that is wiped clear daily.  A persistent young man refuses to give up on her and shows her increasing love each day, finally winning her as a bride.  While “do-gooders” tried to not upset her and keep her safe in her memory prison, gradually her family and close friends came around to understanding that helping her grow was better than the daily trap.

I trust my support circle.  They do NOT protect me by guarding my mind and memories, but encourage me to be honest, step out, ask questions, find answers, and grow.  This is the MORE that we all need, people who will challenge our memories, rather than protect us in bubbles.

I hope you will find that There Is More for you too, and get the support people who will challenge your memories, and not be insulted by your Fake memories, as you try to clear everything up.

Tom Schuck

Every Day is Squirrel Appreciation Day

——————————————
More Squirrel-ly Than Ever,
Tom

 

The Annual Stroke Meeting at Hartford Hospital 2018

May 15, 2018 Stroke, stroke support, TBI Comments Off on The Annual Stroke Meeting at Hartford Hospital 2018
The Annual Stroke Meeting at Hartford Hospital 2018

There Is More Meeting.com joined dozens of other organizations at the Stroke Conference sponsored by Hartford Hospital in May 2018.

Pictured above is Daryl Hayott.  He and Tomaca Govan manned (and "womanned") our table for the event that day.  We passed out as many business cards and brochures as we possibly could.

People are actively seeking answers, solutions and support for stroke.  We want a cure.  We want to understand why this happens and how we can prevent it.  In addition, we want to be able to cure it if it does happen!

Several speakers talked about their experience as stroke survivors.  We also listened to a caretaker who spoke.  Susan Taboada, APRN was the main guest speaker for the event.

 

Pictured above is Daryl Hayott and Susan Taboada, APRN.  Daryl feels very fortunate to have been able to work with Mrs. Taboada after his stroke recovery.

 

Susan B. Taboada, APRN

 

Hartford HealthCare Medical Group

Specialty

Neurology < Accepting new patients for this specialty
Vascular Neurology < Accepting new patients for this specialty

Areas of Interest:   Neurosciences, Stroke

https://hartfordhospital.org/SusanTaboada

hartfordhealthcare.org/neuro

860.545.4100

Hartford HealthCare Living With Stroke Conference May 5, 2018

April 30, 2018 Stroke, stroke support, TBI Comments Off on Hartford HealthCare Living With Stroke Conference May 5, 2018

Friends from “There Is More Meeting.com” will be at the 17th annual Living With Stroke conference.

We will be there to provide information about our support group meeting and look forward to seeing you there!

________________

 

Saturday May 5, 2018

8:30 am to 2:00 pm

Hartford Hospital, Heublein Hall in the Education and Resource Center

560 Hudson Street

Hartford, CT

Speakers:

The Unspoken Complications After Stroke

Susan B. Taboada, MSN, APRN, SCRN

 

Attitude Will Make A Difference

Brian FX Connolly

This is a FREE event.

Continental breakfast, lunch and valet parking will be provided.

Registration is required.  Call 1-855-442-4373.

Click this link to download the Living with Stroke flyer 2018