Debbie's Place

A Patient's Point of View

Category: CTE Chronic Traumatic Encephalopathy (page 1 of 3)

Do you Remember?

 
Do you remember wondering if you were somehow being punished for some terrible past deed?
Do you remember when survivor, and caregiver were only words in your vocabulary, rather than a way of life?
Do you remember all the energy and hours playing the “what could have been” game?
Do you remember the anger and the remorse?
Do you remember wanting to blame anyone, and everyone for this unforgivable twist in the course of your life?
Do you remember the pain and the uncertainty about what the future would hold?
Do you remember that with the passing of time, the disbelief gave way to realization?
Do you remember when the feelings of horror started turning
into feelings of reality?
Do you remember when the pain started being less acute, when taking a deep breath was no longer impossible or quite as painful?
Do you remember when the grief process allowed you to release some of the over-whelming frustration?
Do you remember when the anger started to finally begin to dissipate?
Do you remember that first cup of coffee that could be once again considered enjoyable and yes, even relaxing?
Do you remember when you first started noticing the beauty of the rainbow after a gentle rain shower?
Do you remember when you first started to notice the beauty in the change of seasons?
Do you remember the first time you noticed that the birds were still singing from the tree-tops?
Do you remember the first time you heard a sad…heartbreaking story and said to yourself “But by the grace of God there go I”, It could be worse?
Did you know that this means that your heart is finally on the
path to healing, recovery and acceptance?

How Do We?

 

How do we adequately put into words what if feels like to have ourselves and our life plans instantly interrupted and life as we once knew it ended abruptly?

How do we adequately put into words what it felt like to be thrown into the traumatic and surreal world of ICU, life support, rehabilitation and limitations beyond what we or our families could possibly comprehend?

How do many of us adequately put into words what if feels like to have a brain injury and go undiagnosed and not have a clue what was wrong with us?

How do we adequately put into words that far too many of us thought our brain problems meant we had gone crazy?

How do we learn to put these horrendous experiences in some kind of perspective and understanding if we can’t find someone to talk to that we think cares about how we really do feel?

 

Cannabis and Stroke Healing

Dear friends, I had a hemorrhagic stroke two years ago last month and I survived. I already had a lot of brain damage and due to my epilepsy I was not eligible for the stroke shot. I had been diagnosed with a 90% brain vessel blockage in 2008 that was inoperable. I started on cannabis in 2010. I knew I was racing against the clock. I did have the brain bleed in 2015. The stroke specifically negatively impacted my lungs, heart, kidneys, balance and speech. Against the odds and with no explanation other than cannabis I had my fasted brain trauma healing yet! Cannabis absolutely does help in brain healing and gives HOPE to the hopeless!

Dementia and Cannabis

Dear friends, this is the 4th year of my dementia and cannabis trial. I have shared with you before that measuring improved cognition is a REAL challenge, There are many types of neuro-degeneration caused by several different diseases and disorders. With my severe brain trauma I knew my risk for dementia was high. Now everyones symptoms will be different but I was 57 and almost instantaneously lost my ability to identify music with any person, place or decade in my life. As a brain injury survivor I had depended on music to do just that for over two decades! Just yesterday I started remembering some of my own all time favorite artists and started listening to them on youtube. I remembered all on my own and with my own long term memory! What a victory and now I have new and enhanced music enjoyment! I use THCA (raw cannabis) twice a day ground and put in capsules. 
 

Cannabis and Severe Insomnia

Dear friends, getting control over my severe insomnia was a huge process. A review of sleep disorder studies and surveys suggest that sleep disorders are three times more common in TBI patients than in the general population. Nearly 60% of all people with TBI experience long-term difficulties with sleep. TBI can interfere with the “internal clock” in the brain that controls when we sleep and wake every day. If injured, the brain may not be able to tell the body to fall asleep or wake up. There are chemicals in our body that help us to sleep. An injury can change the way that these chemicals affect the body. When I first started cannabis I was not going to bed a single night of the week anymore. I had gone ten days and ten nights and eleven days and eleven nights. Absolutely nothing could put me to sleep including various prescriptions of sleeping pills that kept failing. When I started using cannabis I was passing out every 72 hours any place I happened to finally fall asleep. I was directed to take all my extra trim and age it in the dark for three months or longer and convert the THC to CBN. I then stated medicating though out the day with my cannabis mixed with the CBN trim. It was actually the first thing that ever slowed my brain and body down. I vaped the CBN rich leaves all day and was able to finally start sleeping nightly on this combination. It did take time and I suspect there was a great deal of brain regulation healing that had to take place. When I lay down each night today, thanks to cannabis and time to regulate my brain, I now know that sleep is finally going to come each and every night!

Ode to the Brain Monster

 

Thanks to medical cannabis I no longer live the gruesome tale of the dreaded brain monster, my term for uncontrolled epilepsy. The brain monster rides piggyback in the recesses of a few chosen brains. It is unclear in most cases how he makes his selection, but the result is always the same. The brain monster is comparable to the worst nightmare of a sleeping child. His size is a little unclear, but he seems massive. His shape is a little hazy, but over-whelming is the word that came to mind. His face, though never very clearly seen by anyone, is most often described as cruel and wearing a smirk across his greedy lips. The brain monster is likened to a shadow because he goes with his chosen everywhere they go.

The brain monster used to be present every time I lay down to go to sleep and was still present at the break of each new day. He used to attend all my social functions and was also present during all my peaceful moments of solitude. He was once ever present and his existence could never be totally ignored. Thanks to medical cannabis I can ignore his existence and go days without giving him a second thought!

Once the brain monster comes to live within a brain, he is stubborn, he resists strongly all attempts at evacuation. Some call him a symptom, some call him a curse. Some call him the brain monster. The main treatment for the brain monster is to somehow keep him calm and sleeping. While he is lying dormant and undisturbed he is much less likely to cause pain and suffering to those of us he has inhabited. It is said that he is to be tip-toed around, cautiously, respectfully, suspiciously. It is sometimes very difficult to find a medicine that will keep him under control.

When he is out of control there are no words quite descriptive enough and no analogy that can exemplify the powerful range of emotions and damage he does to those of us he has inhabited. It is said that the brain monster can be felt stretching and yawning as he starts to awaken. As the brain monster starts to stir, the brain sends signals of warning to the rest of the body. The warning may be felt as the stirring of fear, or may be felt as just a slight tingling or numbness on one side of the body. The warning may be a drop in level of consciousness, or just a brief staring spell. Whatever the warning take care and heed, because it means the brain monster is no longer asleep. Some call this warning an aura, others refer to it as their personal gateway to hell on earth. This monster sometimes becomes all to familiar because he wakes up time and time again. His destruction is felt by far too many. He attacks little precious children, he causes parents many a torturous sleep-less night. He is responsible for immeasurable loss of independence. He has taken many a driver’s license away. The brain monster has caused many qualified workers loss of meaningful employment, loss of confidence, loss, loss, loss. Beware of the brain monster he does not discriminate. I learned that he can waltz in unexpected without warning and without a known cause anytime and inhabit anyone.

I finally experienced that with multiple seizures types resistant to any type of treatment, medical cannabis was what gave me my first and only relief and reprieve from the ominous threat of the brain monster!

 

BI Awareness and the Techno Age

Dear friends, I have been sharing brain injury
awareness for over two decades. If we really
look around and listen to fellow survivors we
should all eventually realize one humbling
truth! We really live among a world of miracles!
We are an amazing and miraculous brother and
sisterhood. Please give yourself credit for what
you are truly surviving! My first BI awareness
and education website was twenty years ago.
I have been waiting for technology to catch up
with what should finally make brain injury easily
for ALL of society to understand! There really is
NO excuse for this technology dependent society
not to understand and feel compassion for brain
injury survivors. In the height of technology there
is no excuse for people not to comprehend the
importance of our mysterious and amazing BRAINS!
It is our bodies only COMPUTER! Our brain injury put
insurmountable difficulties on our precious computers!
It makes me smile when I think about all the people that
FREAK out if any of their computerized gadgets get a glitch!
They panic if they hear it can’t be fixed by tomorrow! Imagine
if they realized they may have to deal with these glitches long term.

This is the best BI analogy I have been able to come up with in
27 years of trying hard!

All In a Brain Injury

We have memory problems.
We have concentration difficulties.
We have sensory deficits like blurred vision,
ringing in the ears or a bad taste in our mouths.

We can have loss of sensation and feeling.
We can have headaches.
Many of us have loss of balance.
We can have light sensitivity.
We can also have noise sensitivity.
We tend to have mood changes.
We tend to become depressed or anxious.

We may have chronic fatigue.
We may have sleep disorders.
We may be confused.
We may have speech and hearing deficits.
We may lose judgement and reasoning abilities.
We may stay angry a very long time.

We are usually not sure who or what we are angry about.
The truth is we do not know ourselves anymore!
We are usually the last to know or realize the extent of our injuries.
Many of us also have PTSD.
Others of us have seizures.
Please, if you see our symptoms, help get us the help we need.

We need support, encouragement and hope.
We need faith that we
can overcome our many deficits.
We need immense understanding as we lost “ourselves.”
It is difficult to again find our way.
Our futures are full of unknowns and extremely hard work.

We are like a brand new person, starting all over again.
None of us wanted to start all over again.
We may be resistant and we may deny, deny and deny.
We need nurturing and we need guidance to again find our way.
We are unique in every way.
What the brain is able to again do
will astound even those that do not believe in miracles.
We are survivors in a special league.

Many of us had experienced loss of family and loved ones prior to brain injury.
These loses were heart breaking and hard to accept.
They did not prepare us for the total and complete loss we have felt
as a result of our “loss of self!”

We are brothers and sisters
as a result of the uniqueness of our loss.
We believe we are the only ones
that can truly understand the magnitude of our loss.
Together we are stronger,
and we learn tips that help us move forward.

Please be kind and patient with us.
If you have not experienced loss of self
it is very hard to comprehend.
Please just sympathize and empathize with our loss.

We are a group that has a tendency to far surpass anyone’s expectations or dreams.
We are the “ultimate survivors” in every sense of our existence.
We were chosen and are all an honor and a blessing to know!

Date With Fate

Fate has no respect for the golden rule.
Fate can be quick, quiet and quite cruel.
We did not get to choose the time or date.
We didn’t get a warning about our date with fate.
We were all negatively impacted by the fate gate.
We never imagined loss could be quite this great.
We did not choose any of this extra harsh life weight.
Fate does not discriminate it gets many all can be bait.
Fate can also be a new beginning or a brand new dawn.
We don’t have to let fate control us like we are its pawn.
We can make a choice to reach out and help others that bled.
Fate touched our life and many of us know we should be dead.
Fate gave us a chance to be thankful for the little things instead.
Fate gave us another chance to live, laugh, love and share daily bread.

Debbie Wilson

We Can Choose

We can choose to just sit and stare,
We can choose to wallow in our despair.
We can choose to focus on how life isn’t fair,
We can choose to isolate and forever live in solitaire.
We can also choose to be kind and fair,
We can choose happiness if we were to dare.
We can choose to be a friend and reach out and care,
We can also choose to again breathe in gulps of fresh air.
We can also choose to find contentment again, somewhere.
We can choose for joy to be continual rather than just rare,
We can always choose to live life to our fullest if we just dare.
We can also choose to be kind and fair,
We can choose happiness if we were to dare.
We can choose to be a friend and reach out and care,
We can also choose to again breathe in gulps of fresh air.
We can also choose to find contentment again, somewhere.
We can choose for joy to be continual rather than just rare,
We can always choose to live life to our fullest if we just dare.

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