Saturday, December 26, 2015

Helping the homeless

Before you even remotely think this is about us, it is not. Its about them, the homeless. It doesn't matter why they are there. Just that we help them.

Thursday, December 24, 2015

Merry Christmas, Health and Happiness into 2016

Merry Christmas to all of you.

Thursday, December 17, 2015

Suicide-A permanent decision to a temporary problem

Suicide. Ending your life is a permanent decision that is irreversible and over a temporary problem. It ends all chances of being able to help fix whatever the reason is for wanting to die.

Wednesday, December 2, 2015

Loss

Loss comes in all forms. I lost my keys, I lost my phone. I lost my to do list. No, those things are mis placed. Not loss. Loss truly comes from feeling of absence. Robin Williams used this line in a movie once and he said it to Matt Damon. "Loss truly only happens when you love someone more than yourself". And that hits the nail on the head.

Wednesday, November 25, 2015

It doesn't matter if you are famous, unknown, rich, poor, male, female, old young......We still need your help

It doesn't matter if you are famous, unknown, rich, poor, male, female, old young......This disease takes no favorites.

In recent news it has come to light a very famous actor and athlete have come out and stated they too have Cluster Headaches.

Thursday, November 5, 2015

"Busting" the Beast-Citizen Science-Our Hero's Bob and Dan.

Before you start reading. Understand what I am writing and showing with these videos, that this is about a disease. For those with this disease, like me, we are very sick. This is not about recreational use of drugs. Because if you remotely think that remove your head from your ass.

Thursday, October 1, 2015

Being a Cluster Head as a dad, son,spouse, friend, and stranger

I often write about the effects that Cluster Headaches has on myself or what it has done to me in my life. What I have not written about is how we are as a Cluster Head by being a parent, child, friend and stranger to others.

First and foremost.

Wednesday, September 16, 2015

Death- Being Remembered

I guess you could say since my mothers passing that death has been on my mind alot lately. People do tend to ponder about life after a loved one has passed.

Thursday, September 10, 2015

Cluster Busters Conference 2015 Chicago USA

As this year approaches for the Cluster Buster Conference in Chicago I URGE you to attend. Beg, borrow and go.

The Cluster Buster conference is

Sunday, August 30, 2015

RIP mom

Aug 26, 2015 my mom. Mein Kleine Mutter has gone home to the lord after a 33 day battle with brain cancer.

My mom was my life and my family and I will miss her immensely and very deeply.
If you met my mom and knew her she instantly became your friend and you would walk away with a full belly. She had spent a large portion of her life as a chef. Mom had served Queen Elizabeth twice in Germany. But served as a wife and mom every chance she could. Mom spent her life being an incredible loving supporting wife to my father of 52 years. A mom to me for 43. A mother in law to my wife for 5 years. And an Oma to my son for 16 and last her shadow,her dog.

From the moment my mom entered University Hospital here in London Ontario, the emergency staff, the 7th floor staff in neurology and the palliative car staff was second to none. Impeccable. They treated me with such dignity and care from telling me my mom was terminal within 12 hours of arrival to taking care of my dad at the same time 3 floors down in General medicine. My dad was brought in with my mom at same time in 2 ambulances. As extremely chaotic as it was my wife and i were cleaning out their apartment, packing, cleaning, selling and bringing their stuff to the hospital, our house for dad to live in, driving from our home to the hospital, back home then their apartment across town. It helped us so much that dad was under the hospital care for 12 days as we could wheel him up in the wheel chair with IV pole to see mom. And eventually a wheel chair and then walker for dad. Having to make arrangements for mom, dad and find a renovator all while trying to visit mom was insane. I can't even explain it.

The erie part of all of this was mom was under the same surgical team as I was. Despite mom being terminal and inoperable we had the same neurosurgeon caring for mom. Mom was in the exact same room and bed that I was in for my brain surgery. It bothered me the most but was comforting at the same time. I can't really explain it.

I sincerely want to thank every single health care worker that came in contact with my mom and dad. Especially Fritz. He had worked with my mom at the Kiwanis Centre. It was moms last job cooking there. She retired after that. My dad had worked with his dad back in the 70s. My mom babysat Fritz when he was a young boy. Having Fritz there was comforting very much. He having lost his parents helped my dad and I cope when we both had a hard time coping. He explained to my wife and I the dying process and it was easier to hear from him since my mom really liked him very much, Thank you Fritz. If you ever read this my family thanks you from the bottom of our hearts. I also want to thank those who are always often missed. The porters, the Voyageur drivers who brought mom and me back and forth every time to the Cancer Clinic, The oncologist, The nurses, PSWs. Everyone, thank you for a thankless job. I really mean it. Many many times I had to leave the room in tears being unable to cope with mom needing help and the hospital staff took care of everything. Thank you. A special thank you to the Nurse Practitioners at UH for helping mom get to palliative.

While all this was happening. Dad being on 4th floor and eventually coming home to live with us and all the medical staff who came to my home to help dad. While all this was happening. My wife and I and dad had to watch the mother, I so dearly love pass away before our very eyes everyday. We did this alone with no help from no one. Everything was done by myself and my wife. Not a single person helped us. But really who could. Only the people who were in my moms life mattered to her and us anyway.

The out pour of support we received from neighbors, from my club brothers, from my fellow Cluster Heads world wide and my in-laws was greatly appreciated. While none of it was physical or decision making, It was comforting to know how much my mom was loved by so many. How much at the end of the day of my head constantly pounding a simple card, email, plate of cookies, or card meant to us.
It also surprised the shit out of me how some said absolutely nothing. Not even sorry for your loss.

The only complaint we had over this was the Ontario Cremation Service who at first said they would take half the payment for the cremation and then changed their mind and demanded full payment only after we signed. Nor when we called to have mom taken from the hospital did the moran on the phone offer a single condolence. DO NOT USE ONTARIO CREMATION SERVICES.

Cancer is a dreaded horrible disease. Why people still smoke after watching this happen just baffles me. Whatever excuses people give is just that. An excuse. Excuses are only good tot he people saying them. If you smoke, quit. No excuses. If I can quit with the worlds most painful disease known to medical science you can too.

Mom was cremated and there will be no funeral, no wake, no gathering. It was moms wishes and dad, my wife and I will honor her wishes. I have the same wishes. Mom said to me if you didn't come see me when I was alive don't bother now I am gone. I feel exact same way. Mom was nor bitter nor upset about that. Mom was 100% at peace with her decisions and life.  She was a fantastic mother to me. Incredible Oma to my son.

I remember so many times of my mom making forts with my son when he was little or taking him bowling, or taking him to get candy. She treated my son so well. Always, and I mean always made sure he had a full belly. pocket full of money and hugs and kisses. She spent time with him every chance she could. I don't even think to this very day my son knows how good he had it, I myself never knew my Oma or Opa.

My wife was so blessed to have her in her life for the 5 years. She was mom to her, My mom truly adored my wife.  They say men marry women like their mom and its true. My family knows I struck a home run with her. My wife is as grieving as all of us for losing her mom too. I can not thank my wife enough for being so grounded, so helpful, so caring, supporting to me throughout all of this when others where completely absent. But my wife and I never have to worry about living life with regret,

My dad. Where do I begin? Dad went from being unaware of where he was from first admitted to hospital for 4 days to loosing his wife and now living with his son and daughter in law in 1 month. After 52 years of marriage, raising a family, travelling the globe with his best friend to now watching her pass. How my dad is keeping it together I am at a loss of words. The only thing I foresee is time. No one ever "gets over it". But we learn to live with it. Dad said in the hospital if its what God wants, Its what will be. We lost mom but heaven gained the best. We in this house are Christians. We beleive in our hearts 100% that mom is in heaven.

I pray Elvis is singing to my mom right now with my dog Buster. Mom is no longer in pain. My mom lived many many years in great pain from knee replacements to bad arthritis to just getting older. She told me she was not affraid to die.

The day before she passed she had completely stopped talking and eating the day before that. Rarely I had any alone time with mom, Because we were always there together,

I had mom alone and said that we would be ok. That I loved her with all my heart and would miss her but we were at peace with her leaving. I begged her for a sign to let me know she was ok. She opened her eyes for a split second and lipped "I love you" to me. Last words she ever spoke.  She gave dad a kiss back on the day of her passing.

I played Amazing Grace by Elvis as we were with mom and read her Psalm 23.

As we said our good bye to mom, I turned around and looked at the door way of her room. Whether you think I was under duress or making this up I know what I saw. My mom was partially poking her head out of the room with a glow around her head like a light from heaven. She waived at me twice and smiled. I know what I saw. I could care or less if a single person believes me. I saw my mom as an angel. I do not need to prove it. I saw it. I don't care if a single person believes me either.

Now we must continue on in life. I only ever wanted one thing from my mom and dad and that was for them to be proud of me. I promised my mom we will be ok. And we will in time, For now the renovations on our home will be finished. Dad will have his private space and we will be there for dad for as long as he needs.

Mom, I will continue to be the best son to dad, the best husband to my wife and dad to your grandson. I will continue to advocate for my fellow Cluster Heads world wide and make you proud and make a difference in this world. I dedicate this all to you momma. We all are going to miss you beyond words. I will see you again in heaven mom and then I wont have any more attacks/headaches.

Until I see you again mom, I love you







Saturday, August 22, 2015

Cancer

Cancer, yes the "C" word. I have never heard of another person not knowing someone affected by cancer either directly or indirectly.

Cancer is the  mothership of all diseases. It is the disease that is the most funded for research yet takes lives in multitudes every single second around the globe. Yet there is no cure just prevention and care. I am not going to blog today about the possibilities of cancer cure. Because there is so many different types of cancer unlike my disease the only difference is sides of the head unless you are super fucked and get attacks on both sides. But today this blog isn't about Cluster Headaches.

Saturday, July 25, 2015

Today is my 10 year Anniversary of Cluster Suicide Headaches and today being worst day of my life

Wow, 10 years. I been debating to either celebrate this or be sad. 10 years of my life taken from me. Yet I been given something profound in place. Will get to that later.

Saturday, July 11, 2015

Family, Divorce, Lost Relationships, Employment and Cluster Headaches

I been wanting to write this for awhile but wasn't sure how to approach the topic simply because I did not want this blog to appear as a cry for pity or sympathy when in fact its factual statements based on events in my life instead of my own beliefs.

Wednesday, July 1, 2015

What it means to be to be a sick Canadian. Happy Canada Day

Debatable, controversial and proud. Health care in Canada.

To me, as a proud Canadian, I couldn't be happier being a Canadian. A sick Canadian at that.

Tuesday, June 30, 2015

Please support my friend Leigh MacInnis who supports us Cluster Heads ! Donate today !

My friend and actor Leigh MacInnis from the TV show Trailer Park Boys is doing a documentary on with hallucinogenics and spiritual medicines. Why you ask to help donate?

Monday, June 29, 2015

Cluster Heads are the absolute strongest people I know.

I am sure you have heard the slogan or term "Whatever doesn't kill you makes you stronger". Or "God only gives us what we can handle?".

Friday, May 29, 2015

RIP Buster

Last night, was absolutely one of the hardest days of my life. I dug a grave for my dog. Mans best friend. My Buster Boy.

Wednesday, May 27, 2015

If it has wheels and a motor. It turns me on more than my neurostimulator in my brain !

Discussing my life with Cluster Headaches is one thing. Living with them is another. Once in awhile I blog about what hurts me, what makes me happy and what I love besides my family. Sadly this story ends on my disease.

Thursday, April 9, 2015

Cluster Headaches are NOT Cluster Migraines. Migraines are NOT Cluster Headaches

I would much rather prefer to read layman's terms myself, and generally that is how I write. The percentage of physicians and medical staff reading my blog is probably pretty low so I write for the survivors and supporters....

Monday, March 30, 2015

My blog, my thoughts, my feelings, my words.....

I do not always say what I feel, what I am going through, but I think more than I say. And if my silence appears as nothing, it possibly is more than some could handle. Silence is bliss right?

I know more than I speak, listen to more than I say. And I do notice things. Sometimes, I choose to say nothing.

Monday, March 23, 2015

The 5 stages of loss. Which includes loss of health.

I guess its safe to say many people have experienced some sort of loss in their life from death of a loved one family or friend and loss of a job/career. Which is pretty normal wouldn't you think?

What no one prepares us is for

Monday, March 2, 2015

less than 2 Million spent on Cluster Headaches in last 25 years ! Disgusting

Less than 2 Million spent on Cluster Headaches in last 25 years ! Disgusting ! Yet over $ 1.872_BILLION has been spent on MS. In no way shape or form am I demeaning MS yet comparing MS to Suicide Headaches. The similarity is that CH and MS have the same disease rate of .01% of the world. This is my justification for comparison in disease rate only.

Tuesday, February 24, 2015

Wednesday, February 18, 2015

Im glad you are reading this....

It makes me so happy you are reading this....

The most awesome thing about this blog is that I can see who and where is reading this.....

And it motivates me even more.

Stay tuned......


Monday, February 9, 2015

Raising Awareness on CTV news - Segment on Cluster Headaches

I wake up each day smiling, living life to the best of my ability, I at how such a beautiful woman chose me and to live with a loving man that has such horror. How my son was born into this without any choice, yet he  inspires me each day to give back and pay it forward. I realize that despite my cards I am dealt, I am a very blessed man.

My life is a gift from God and I know that what ever I do today is because of him. I love life and I love to help others the best I can.

I know some people are best suited to remain quiet and that is ok, Its in me to speak out for those who lost their fight. Lost their will to life so they did not die in vein. Today, I dedicate this to them......

Click Here for news cast



Saturday, January 17, 2015

Suicide....the taboo subject to talk about.....RIP Scott, Melissa, and so many others.

With great sadness and displeasure I once again receive news of another cluster head taking their own life.
This is becoming a monthly notification for me and others. It is with great sadness, heavy hearts we lost one of our own.

Friday, January 9, 2015

2015

It is only January the 9th and I am astonished what is taking place globally. Seeing cowardly acts upon us. It is frightening. Sad and tragic. The world is changing.