Sunday, May 15, 2022
Wednesday, April 6, 2022
Wednesday, May 26, 2021
So My wife and I been in Nova Scotia for over a year now. It was a year December 24 on Christmas Eve.
I left London Ontario without any hard feelings, resentments or feeling of ill well to those who done me dirty. Sorry. There is none. I actually left with peace. 😀
No one can take away peace. its like loving yourself. No one can MAKE you miss them, love them or feel bad you are gone.
My days are filled with gratitude, and happiness. I go to bed with grace. And repeat daily.
I hope you find solice and peace in your life too. Be well. cause we are doing fucking incredible!
Sunday, May 16, 2021
2 years today making medical history. First on the globe to have stem cell for cluster headaches into complete remission
2 years ago. May 16, 2019 I had Stem Cell Therapy by Dr. Calapai in NY.
Saturday, April 24, 2021
Please share this story of #HOPE with someone who may need to hear this.
Tuesday, April 20, 2021
I been trying to think today of what to write. I am filled with incredible emotion of great sadness and gratitude at the same time. My father passed away today, 1 year ago.
I guess todays blog is for me. Its all part of the grieving process and healing. I really had a tough time when my mom died and rightfully so. Like anyone, loosing a parent you love and cared for is deeply sadnening. I cried every single day for a year when my mother passed. And have done the exact same thing for dad. Eventually in time those tears turned to smiles when I think of my mother. I dont think I am anywhere near it now with dad. Time will tell.
My folks came from Switzerland(Originally Germany) when they immigrated to Canada on Canada Day July 1,1967. They came with my older estranged brother, my mom and dad and $25 to their name getting off the plane.
Prior to that. Dad grew up in war time. He vividly remembered the Nazis, the kind Americans who was kind to dad and the appreciation for a life in Canada when they arrived.
My father had quite the work history from starting out apprenticing in Germany at hotels that were castles. taking care of dignataries, presidents and so forth. His career switched to being an airline Pursor for CP Air. God, he loved flying but eventually gave it up to be home with his family. He then switched to selling cars. He held the record for two years straight with the highest sales in Canada. Selling over 370 cars in 1 year. In 1977 we moved back to Ontario where dad started selling cars again but soon hired at GM Diesel Division in London Ont. Where he worked until he went on permanent disability due to throat cancer in 2000.
Dad built Buses, Locomotives and even Terex trucks.He hated the job, as it was a hard factory life. Not the white gloves he was used to wearing. It paid well and allowed us to have a good life. He did it for us. NOT HIMSELF.
In 2000 dad got cancer. Throat cancer. He had to make a decision but asked my thoughts. He decided to persue having a full lyrengectomy. They removed his entire voice box. Already haveing 1 lung, emphizema didnt help him and made the rest of his life very difficult. Dad was often made fun of, starred at. Dirty looks, snears and comments from IGNORANT FUCKS who have no clue what he was dealing with. He constantly struggled with his health. Many days he tells me he wished he has not had the surgery but he beat the odds and lived 20 years as the life expectancy was 5 years.
My father and mom loved on another deeply and in a way I only understood after moms passing. He struggled badly with her loss. They are together again, home in heaven. This gives me peace.
My father had an increidble life. Met many celebrities, been around the globe 26x. and loved to travel, fish and CNN.
Dad was very proud, and happy for our life in Nova Scotia. I sincerely wished he could have seen it before he passed.
Dad, Kristen and I miss you terribly. Loosing you was the hardest thing we have had to live with. You were more than a dad, You were wisdom, compassion and the most generous person. Your memory will live in us every day. There are not enough words to express my grief. How sad we are but we are at peace and I owe that to you. I love you dad. Rest Easy xoxo
This was the last time I seen my dad alive in person and last time I hugged him alive.
Thursday, January 21, 2021
Tuesday, January 12, 2021
When was the last time someone you cared about got a cold or a flu? When you heard did you say sorry you are sick or I hope you feel better soon. Right? What about a sick person who doesn't get better? How do or should people around that sick person support the sick person? Well here is my 2 cents.... coming from a person who is sick.
The person you know, the person you care about is now sick or has been battling and finally diagnosed. What to do? How do you help?
1. The persons disease/ailment/pain/disability is NOT your fault so dont try to compensate as it is.
2. Care for that person as YOU would wish to be cared for. With compassion, empathy and love.
3. Treat the person like you normally would. Treating the person as an invalid isn't beneficial to anyone suffering,
4. Do not abandon the person. If your friend is unreliable. Meaning they leave early, arrive late or cancel it is not their fault. They didn't not show up intentionally. They are fighting a battle you know nothing about .KEEP INVITING THEM
5. Ask questions. DO NOT ASSUME, Every person who is struggling with something is fighting this them self. Your version may be completely different from the suffering they are experiencing. Telling the person I had that once most likely isn't what the person is experiencing.
6. If you can't deal with it, tell the person. Living or being around a person who is sick is not easy. The sick person may have mood swings, pain you couldn't remotely comprehend, and fighting a battle you know absolutely nothing about.
7. Don't offer advice. As much as you 'mean well" telling a person with an incurable disease that drinking more water is the answer to a cure is probably gonna get you a black eye or a middle finger.
8. Think if what this person is experiencing in their life, how greatly their life has been disrupted. Inability to work, do social activities, just trying to bear one more day in pain and suffering. Do not be judgemental. If you see the person having a good day being active. Support it. Don't say "well I seen you at the mall or park, you must not be sick. No we have good days and make the absolute most of good days. That doesn't mean we are cured, healed or better. Most likely if you seen the person at a store or out, is that they are having a good day.
9. Isolation. Probably the worst. Even more than living with a disease or pain. Being ignored, forgotten, abandoned is the absolute worst thing you can do to a sick person. Don't know how to deal with it? Imagine being the sick person having to deal with it....suddenly your feelings of " I cant bear to see the person suffer" doesn't mean jack shit. Man up. Be a human being not a fucking coward who doesn't have the kahunas to see a sick person in your life.
10. ADMIT you do not know, understand or get it....talk to the sick person, ask questions on how to be beneficial, remain in their life and offer support, compassion and empathy. Leave your opinions at home.
If you have read this far. Know someone going through a tough time, These tips may help instead of hinder. I speak from personal experience.
It took 1 person to care about me to get me better when others didn't care I was even breathing.
I write this with great gratitude for the people in my life. Love you all.
Thursday, December 24, 2020
Wednesday, November 4, 2020
Saturday, September 19, 2020
Sunday, July 26, 2020
Did you ever get asked at a job interview.... Where do you see yourself in 5 years? My answer should have been "ALIVE" if all goes well.....
Saturday, May 30, 2020
Saturday, May 16, 2020
I've had many say "my mom gets those, or I had one of those once". chances are, most likely not. Cluster Headaches affects 0.01% of the world. Approx 1 million people globally in what 7 billion people? We are a grain of sand in the world. Invisible. because its an invisible disease that unfortunately unless you are a neurologist you are not taking us seriously. Even a good neurologist can throw his hands in the air and say the odds of help are very slim. As my own neurologist told my GP. I was even told at the pain clinic after waiting 1 year to be told. Go home, there is nothing further we can do for you. The meds you are in will end your life sooner than later. We can no longer help you but if you want to join a support group on living in pain we can sign you up for that in a years time......
I needed that group when I first got sick, Not 15 years later. In 15 years I tried my hardest to live with this disease. Open a business and try to hide my disease. I tried dating, raising a son, being a son, being a friend. I fucking tried everything I could with this disease. Even a suicide attempt in Florida. Again hours away again in April 2019.
I don't know how many times I have heard someone say to me, try this. I did and then had 4 brain surgeries. Which left me with PTSD, a Brain Injury (TBI), aphasia years later, short term memory loss, cognitive issues reading and comprehending documents, instructions. Difficulty learning new information. And to me the worst part. A 4th undiagnosable headache that even to this very day they can not diagnose and struggle to treat. This 4th headache I am still battling as I write this. This headache, leaves me bedridden without meds. The meds I am on are meant for 5 days max use. I been on them 4 years. And they only give me 40% relief. As the years went by 40% pain reduction is the best they can do and what I live with to this very day.
This 4th headache is unlike my other headaches. Migraines can last hours to weeks. Debilitating, vomiting, pressure. No fun. Cluster headaches last 3 hours max and you can have up to 15 a day. The pain of a cluster heachache is indescribable torture. Tension headaches go away on their own and usually a simple Tylenol make it disappear quickly.
Today, May 16, 2020 is 1 year from Stem Cell Therapy I had by Dr. Calapai in NY. I have kept a headache diary. and tracked my headaches since the first day.
Overnight the first thing we noticed that my aphasia had gone. Aphasia for me was inability to get some words out when talking and stuttering. It was progressively getting worse everyday. Being able to speak normal was a blessing. Then I noticed my sciatica pain was reduced by 50% overnight and today is sitting about 95% pain free from sciatica. Sciatica if you have never experienced is a nerve trigger mostly by back pain. My l4,5 caused my sciatica pain. Now usually only happens driving in my wife's car. For some reason the seat triggers my back pain. I am very grateful for this to be where it is. Next. In 365 days I had 1 migraine, It lasted almost a week, It was around the 1st or 2nd month of stem cell. Since then I get migraine aura's. That feeling when a migraine starts. But it hasn't gotten full blown. Some cannabis usually does the trick. I rarely get tension headaches anymore. Most just go away on their own or a simple Tylenol removes it. Now, Cluster Headaches. The worlds most painful disease known to medical science. FUCKING GONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Insert Hallelujah Music. Dance naked, jump up and down. Gone. NOT 1 fucking cluster headaches once!. Ive had some auras. Once I thought I was having the beginning of one and it turned out to be a tooth ache. But zero clusters.
To my knowledge, I am the only person in history who has successfully treated cluster headaches with stem cell therapy and been in complete remission.!!!
CNN are you listening??? Dr.Sanjay Gupta....this is HISTORY for the medical community. I know Doctors and medical professionals rely on stats. Well here is legit factual stats. 365 days cluster headache free!!! THIS IS HISTORY and hope for anyone suffering this horrible disease.
For well over 10 years I spent my time advocating, and creating awareness for this disease. At my wits end of wanting to die, I contacted everyone I could for help. Dr. Phil. Dr. Oz, Doctors, CNN's Dr. Sanjay Gupta. Anyone who could potentially help me with my headaches. With no help.
I had become good friends to someone who wants to be anonymous that reached out at my lowest of lowest. I was suicidal. I wanted to die. I had fought as hard as I could. Struggled as long as I could. Was told to go home from the pain clinic as their was no more hope. I had no quality of life. Life was not worth living anymore. I told my friend this, and he knew I was suffering badly. Except he offered HOPE. By Help. Something I had lost a long time ago. He offered me help from a doctor he knew personally that he personally seen positive medical results first hand from other health problems. At that point I had NOTHING to loose. I wanted to live is what most people fail to comprehend. I wanted to die. But wanted to live. All I ever wanted was to feel better. Not suffer so much. Have a quality of life. I realize I am sick. I realize certain thing sin life are over for me that I can no longer do and I have accepted that. But I tried and tried and tried with everyone for help. Who knew my help was going to come in the form a friend. A hero. My brother.(not sibling).
So I am off to NY for Stem Cell Therapy. And at this point i had nothing to loose and everything to gain. I ALWAYS was 100% positive with every doctor I met. I always tried what they suggested to me, Pills, surgery, You name it. I never said no. I even did magic mushrooms which did help for awhile relieve the intensity and frequency of clusters but stem cell completely stopped 3 of 4 headaches dead in its tracks PLUS stopped aphasia, sciatica, mental health, physical health, back pain, labido like I was 18 again. Just overall well being, feeling better. I can't explain it. I am a different person. Different outlook on life. What matters, what doesn't. Who matters, who doesn't. I value people not money. Life is different. Its better. A year ago prior to this I didn't have the physical capacity or mental capacity to drive to Toronto Ont from London. A 2 hr drive. Now we packed the house and moved across country. Hopefully that should give you the gist of how much better I am.
In 1 year from today. I had stem cell therapy, flew to Halifax with my wife for her holidays, Fell in love with Nova Scotia and flew home, sold the house and moved across country. Something I could have never done without this therapy. I would not even have been alive if it wasn't for my friend..FACT.
I am still sick, I still have a smaller list of health problems which I am still battling but I am LIGHT YEARS away from where I was. I suffer far less. I am very grateful my dad got to see me get better, Be happy and peace in Nova Scotia before he passed away last month. In fact, yesterday was his birthday. I know he and mom and looking down happy for us.
Since I advocated and created awareness for cluster headaches I read many many many claims of the word "cure" from fellow cluster heads. I know my statements above may come with skepticism. And that is good and welcomed. Proof is in the numbers. Numbers do not lie. 365 days cluster free.1 migraine in a year at the beginning of stem cell. Put that in your pipe and smoke that!!!
Many BULLSHIT claims on line from rubbing your temples to "drink more water". I've done them all including having my head drilled into awake for brain surgery. So this isn't a claim. These are FACTS. I had stem cell therapy by Dr. Calapai in NYC and I am in remission for 1 year. That's a fact. Each day I continue to be better is further proof this worked for me. After THOUSANDS of Dr visits, thousands potions, treatments this worked for me. I have a quality of life worth living. I now celebrate life. I love life. There is so much I want to do and see in Nova Scotia with my wife and family out here. I have no desire to end my life anymore. I never wanted to die before. I wanted to live but only if it meant I didn't suffer.
I can tell you Rock Bottom teaches you things that a mountain top never will. That health is the most important thing you can have. That people matter not money. Things I once loved and cherished are now an after thought. What matters doesn't and now what never mattered is most important to me. Helping others. I lost both my parents recently. There was NO U HAUL behind them. They took their memories and left behind what they contributed to the world. Money means absolute shit to me. I don't care how big your house is, your car. None of that means shit to me. How you treat others, how you give back in the world. That is what matters to me, And I surround myself with people who are just like that. Givers, not takers.
I look back at the last 15 years of my life. How sick I was, How terrible life was. How some people are just......in my past. I look forward to days ahead with my family here. Travelling. Exploring, Helping those in my community. It has been a helluva journey. Things are only going to get better. Even with this Covid 19. Kristen and I have big plans for the future. Life is good. We are happy and at peace. I still have 365 more days left with stem cell to get even more better. Stem cells double daily for up to two full years. I am at the halfway point and things are looking positive for me.
I am not the type of guy to scream" Hey I did this, go do it, It worked for me it will work for you". I know everyone is different. everyone responds to treatment differently. Everyone has their own case of the disease differently. But I will say Stem Cell worked for me and gave me hope.
You will be hard pressed to find a day in the last 365 that I haven't said I am grateful or told my buddy how much I love him and how grateful I am for what he did for us despite him wanting zero recognition from day 1. I love you brother, thank you for helping me. You are the best bud I could have ever asked for. Being there saving my life, the treatment and when I lost dad. You were there and continue to be everyday. I love you. Thank you Dr. Calapai for the treatment, thank you Redecan for the flight. Thank you to everyone who didn't care I was sick and still was my friend not the cowards who ran the other way. Thank you to my family here in Nova Scotia. You welcomed us with open arms and we still can't believe we are here. Thank you to my neighbours who welcomed us and took care of us during our 14 days in the house getting us groceries and everything.
And very important. My wife. You took the vows of better for worse when worse was all we knew. You were beside me for every brain surgery, every attack, every heart break, loss we shared and stuck by my side through all of it. Its not me who deserved the private jet, and the trip. It was you. You stuck by my side through all of it, When people ran the other way, you ran towards me. Ill never forget how you stuck by my side through all of it. Now its time for you to enjoy all the good that has happened to us both. Anything good should be for you not me. You deserve it babe. Grateful for you. We are here in our new home with Annie and life aside from Covid and loosing dad is pretty good.
Feel free to share this blog with cluster headache and migraine survivors. It may save another life. And potentially give someone a quality of life.
I dedicate this blog to you my friend. Without you I wouldn't be here, be better and have the life we have now. I love you.
Friday, May 1, 2020
Sunday, March 29, 2020
Wednesday, December 25, 2019
We left London Ontario Dec 21,2019.
Sunday, December 1, 2019
Friday, November 22, 2019
But lets look at actually what happened.
Sunday, October 27, 2019
I don't want to write how bad my life was. Because
Friday, August 30, 2019
And all of this changed from a TV show.....fucking crazy isn't it?
I am confident you have at least heard of
Tuesday, June 4, 2019
Yes, that is where it began.
Friday, May 10, 2019
I have become friends with Mike Smith, the actor who plays Bubbles on the TV/Movie series The Trailer Park Boys. Aside form being a huge fan, I am also his friend. Yes, he means that much to me. If Mike was a plumber, he would still be thought of equally.
Now here is the harsh part to read but true.
December 31,2008 when I jumped in front of a bus in Miami, I thought then I was at the lowest of low I had reached. Since this past September, my last appointment with the pain clinic was my last and final hope. But they told me there is no more tests to be done, no more referrals, n more nothing. and Sir" We are very sorry, we do not know what is wrong with you and btw, the medications you are on will end your life sooner if you continue to stay on them". Before anyone worries, they are NOT narcotics. Narcotics do not help this pain. I have been offered everything.
Everyday, I got a bit worse. Not much but day after day, week after week, month after month, And after years of fighting an additional pain on top of all the other things were taking a toll on me mentally and physically.
My wife worried everyday, wondering if I would still be here when she got home from work. I would tell her, don't be sad when I am gone one day. Be happy I am no longer in pain. My fiend who passed away last month understood this. His passing, I wished it was me.
I am not depressed. I am in a circumstance that would kick anyone's ass. Isolation is probably the worst. It has only added to my heart break.
I was really struggling bad. And one day a friend was like "Hey Man, how ya doing?". And I basically verbally diarrhea all over him. I could have lost a friend by dumping this all over him. And at that exact moment. it could have been anyone on the other end listening to me cry. That person was Mike Smith. I do not refer to him as an actor, a celebrity or a Trailer Park Boy. He is Mike to me. I love him.
Mike reached out to me as a friend and offered help. At first I was like thanks Bro, ad then realized he was serious. Dead serious. The very first thing he said to me was " I don't want any acknowledgement, I don't want this about me". He said . "I am going to do everything in my power to help you". An offer no one has given me after I lost all hope.
Mike literally saved my life. As much as I love my wife, she can't fix or heal or take my pain away. Only sit there in horror.and watch me suffer helpless. My wife deserves way better than this. She deserves a healthier version of me.
Within a couple days, a Go Fund Me was up, he is making personalized videos for fans on www.cameo.com (links for all below). and is doing everything in his power to help.
I am still in total shock, awe and we both are so humbled by his offer, kindness and generosity.
In the past few days of watching the video,ad watching donations come in, we are so appreciative of every dollar raised, every tweet, Facebook share, everything that everyone has contributed. Kristen and I are so grateful and humbled. Thank you everyone!
I make less than $10,000 a year on CPP disability. So any dollar raised means as much to us as much as more than 1 dollar raised. Equally grateful no matter what amount. I know $5 for some is a lot as it would be to us.
We plan on heading to NYC to a friend of Mike's who does Stem Cell Therapy to try to help me. This Doctor has taken great interest in my case and wants to try to give me a better quality of life. We both feel in our hearts we won the lottery. I know I struck gold with my wife but twice? Yes, I am eternally grateful to this man, and my wife for struggling with me by my side and never once ran off like a coward.
Not all super hero's wear capes. Some wear thick glasses and love kitties.
Here is the links.
CTV London News story CLICK HERE
GO FUND ME CLICK HERE
To book BUBBLES for video message CLICK HERE
Friday, April 12, 2019
Monday, March 11, 2019
Saturday, March 9, 2019
Sunday, March 3, 2019
Wednesday, February 27, 2019
Thursday, January 17, 2019
Monday, December 31, 2018
Tuesday, December 25, 2018
Wednesday, December 19, 2018
Thursday, November 22, 2018
Saturday, September 22, 2018
After watching my video I would like to stress that I never gave up. they did.
So please stop assuming it was me who gave up.
Tuesday, September 11, 2018
Sunday, August 26, 2018
Thursday, July 26, 2018
Wednesday, July 4, 2018
Monday, June 18, 2018
Todays Blog/Vlog is about doing this 5k walk (2.5 for me and 2.5 for my wife) and sharing what its like from her perspective. How she feels about what I and others go through, stigma of being sick with an invisible disease, brain surgery to natural medicines !
Listen to an unsung hero never complain, always offer help, love and support and you will understand why I married my best friend.
Wednesday, May 2, 2018
My blog has taken a bit of a back seat since I started VLOGGING over a year ago. Making video's consumes alot of time and effort. Also having a subject to vlogging and a message is very important.
I have always prided myself in
Thursday, April 19, 2018
Wednesday, March 14, 2018
Sunday, December 31, 2017
Monday, November 13, 2017
Sunday, November 5, 2017
Tuesday, July 25, 2017
To think, all I have been through in 12 years. It's crazy.
NO ONE could have prepared me for what was going to happen. Now, today. not too much surprises me anymore.
Let's review and reflect on 12 years.
Sunday, July 23, 2017
Sunday, June 25, 2017
Thursday, June 1, 2017
Monday, May 8, 2017
Thursday, May 4, 2017
Thursday, April 13, 2017
My dear friend Bill of Hawaii competed in a 24 hr race in Texas.
Thursday, March 23, 2017
Really, to even be thought of let alone raced for I am truly humbled. I am at a loss for words.
And I guess from what my wife tells me, all the hard work I been doing with the blogs, vlogs, logos, awareness and advocacy is starting to come to fruition or is continuing thereof.
Tuesday, March 21, 2017
Sunday, February 26, 2017
Thursday, February 23, 2017
5 years ago today, I had Deep Brain Stimulation Brain Surgery. It was my 2nd of 4 brain surgeries to have.
Sunday, January 8, 2017
It could have very well happened to me and you. I have seen with my own eyes people I used to work with living on the streets. Factories close, people lose their home because they can't pay their mortgage or rent. Marriages fall apart due to job loss, health, addiction, mental health, and getting sick like me. And yes people can become homeless for some of those reasons.
Friday, December 30, 2016
Tuesday, December 27, 2016
Saturday, December 24, 2016
Monday, November 21, 2016
Thursday, October 6, 2016
It's a sad reality that almost every one of us looses our careers, homes, relationships due to hardships brought on by costs attributed to being sick.
Monday, September 19, 2016
Saturday, August 20, 2016
This blog is not written in haste in anyway shape or form but a true reality of survivors lives dealing with the general public.
Friday, August 12, 2016
And some might ask why tell a celebrity who isn't sick about a disease they never heard of? Its the same reason I tell average Joe's about Cluster Headaches. Except celebrities have the ability to reach a greater audience than I ever could. And I will explain that a a bit further.
Monday, July 25, 2016
Monday, July 11, 2016
Sunday, June 5, 2016
Saturday, May 28, 2016
Tuesday, May 17, 2016
Sunday, April 24, 2016
Tuesday, April 5, 2016
Saturday, March 26, 2016
Monday, March 14, 2016
Friday, March 4, 2016
Wednesday, February 3, 2016
Tuesday, January 26, 2016
Friday, January 15, 2016
Saturday, December 26, 2015
Thursday, December 24, 2015
Thursday, December 17, 2015
Tuesday, December 8, 2015
Wednesday, December 2, 2015
Wednesday, November 25, 2015
It doesn't matter if you are famous, unknown, rich, poor, male, female, old young......We still need your help
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
Thursday, October 1, 2015
First and foremost.
Wednesday, September 16, 2015
Thursday, September 10, 2015
Sunday, August 30, 2015
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 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
Saturday, July 11, 2015
Wednesday, July 1, 2015
To me, as a proud Canadian, I couldn't be happier being a Canadian. A sick Canadian at that.
Tuesday, June 30, 2015
Monday, June 29, 2015
Friday, May 29, 2015
Wednesday, May 27, 2015
Thursday, April 9, 2015
Monday, March 30, 2015
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
What no one prepares us is for
Thursday, March 5, 2015
Monday, March 2, 2015
Tuesday, February 24, 2015
Wednesday, February 18, 2015
Monday, February 9, 2015
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
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
Tuesday, December 23, 2014
Wow, what a year 2014 has been. So many things have happened in the past year. Globally and in my life.
It has been an enlightening year, educational, uplifting and blessed.
Wednesday, December 10, 2014
Winner Announced for my personal copy of "Lucky Man' by Michael J.Fox and Cluster-Suicide Headache decal
Winning Draw.....please watch and share to see if you are the winner.
Wednesday, December 3, 2014
Win this book "LuckyMan" by donating to michaeljfox.org & clusterbusters.org help find cure to 2 both diseases
Monday, December 1, 2014
Friday, November 21, 2014
Tuesday, November 18, 2014
I have hid my attacks before dating and when they happened the girl got so freaked out she bailed on me. I have dated other girls and told them I was sick and they bailed on me. But my gut that day said tell her.
So, it went something like this..
Monday, November 17, 2014
Thursday, September 25, 2014
Its been 1 week now since I first walked into the meet and greet and was in a room where literally not a single person had to speak. Everyone of us could have kept our mouths closed and not said a single word verbally yet had a conversation.
Thursday, September 11, 2014
Friday, August 22, 2014
Friday, August 15, 2014
Thursday, July 24, 2014
Monday, June 9, 2014
Sunday, June 1, 2014
This was the very first time I have met another survivor in person. And her spouse.
She is a survivor in more ways than one.....
Monday, May 19, 2014
Hey, have you ever told someone you have Cluster Headaches? And their immediate response was...
Tuesday, April 15, 2014
Friday, March 28, 2014
Tuesday, February 25, 2014
So I made a FB page not of me Tom *******, I made one of ClusterHead Survivor. A guy who had 4 brain surgeries and has Cluster Headaches.
Wednesday, January 22, 2014
It breaks my heart to see him suffer like this day and night non stop and like any parent with a brain cell wishes no pain upon their children and have asked god many times to take his pain and give it to me.
Wednesday, January 15, 2014
Wednesday, December 25, 2013
Today, I and many others celebrate the birth of Jesus. For some others its just a time to get together with family and inadvertently celebrate Christmas. Either way I wish everyone a Merry Christmas.
I look back in review of the last year I and my family has had.
Thursday, December 12, 2013
But yesterday at 2am during my attack only a block from my house, a stolen truck with a 14 yr old kid driving, wrapped a truck around the tree and passed away. He was my sons friend.
Tuesday, December 10, 2013
If you drink, do not drive. Period. And please forward this video link to anyone prior to going out for the night. Its all I ask. Not Cluster headache related but please do not drink and drive.
RIP, James, Mike, Scotty and Jim.
Merry Christmas everyone
Friday, November 29, 2013
Tuesday, November 19, 2013
In September it had
Wednesday, October 16, 2013
Saturday, October 12, 2013
Thursday, October 10, 2013
Just yesterday again I was judged parking in handicap parking spot.
Tuesday, September 24, 2013
Monday, September 2, 2013
Lets start at the beginning.
Friday, August 23, 2013
Wednesday, August 14, 2013
Tuesday, July 23, 2013
Sunday, July 7, 2013
Monday, July 1, 2013
Sunday, June 23, 2013
I am a chronic Cluster Headache Survivor with 4 brain surgeries under my belt. Yes, this is my feeble attempt at having hopes of being interviewed on CNN by you to discuss awareness for CH and perhaps my DBS surgeries I have had.
I have written CNN, Your office and to my dismay never heard back.
I am now relying on all my friends, family, blog readers and my YouTube Page supporters to reach you to get on TV and be interviewed.
As you know this is one deadly disease. Nicknamed the suicide headache and for obvious reasons.
There is no cure, many of us undiagnosed, many of us living without proper medical treatment.
I have a YouTube page with well over 300,000 hits, just started my blog in December 2012 and almost 50,000 hits. I need millions of hits to spread awareness.
I lost my vanity along time ago. I have been contacted about suicide twice prior to the act. There is a reason Dr.Peter Goadsby has coined this term "The Worlds Most Painful Disease known to Medical Science". There is not other form of pain any worse.
The sooner awareness is spread, the sooner people can get the help they need.
Not a single Cluster Head would ever dream of asking for pity. Yet we seek understanding as even our own family members have no idea the pain we endure. Its torture,inhuman,unjust and severe.
I and others have lost friends, relationships, jobs and even taken their lives over this.
We do not seek attention yet so many sufferers "cash out" where as with help from advocacy, awareness, and certain treatments, some of us want to live and fight "The Beast" and not give up.
I use the term 'Survivors" vs "Sufferers" because that's what we are....surviving.
Please interview me.I am officially "disabled" in Canada. And dedicating my life now to spreading awarness, helping others cope, being positive, supportive and offering hope.
Please Dr.Sanjay Gupta, help us.
I am now asking every single person that reads this blog, watches my YouTube videos, to Tweet, email, hand mail Dr.Sanjay Gupta and or CNN. Any help is appreciated. I can no longer do this alone. PLEASE HELP
Sunday, June 16, 2013
Wednesday, May 22, 2013
As some of you know, we are what you might call "Gear Heads", "Car Guys", whatever lingo you choose, if it has engine and wheels, we are into it.
A Canadian newspaper/ magazine is published twice monthly and they featured a 3/4 page story on my son. I couldn't be any more proud. I do hope the pics are large enough to read the story.
Sunday, May 19, 2013
I advise to give generously to www.michaeljfox.org
Although I do not have PD, I have CH and
Tuesday, May 14, 2013
Sunday, May 12, 2013
Thursday, April 25, 2013
I truly believe he ended up on our lawn to rescue me, not me rescue him. Since then he has become and extension of our family. He has been so incredibly therapeutic for my healing and journey and at the time after brain surgery #4 I really needed to concentrate, and focus on positive and taking care of this sick animal was all I could do.
Friday, April 19, 2013
Friday, April 12, 2013
Thursday, April 11, 2013
Saturday, April 6, 2013
Thursday, April 4, 2013
Tuesday, April 2, 2013
Sunday, March 31, 2013
Wednesday, March 27, 2013
Thursday, March 21, 2013
Tuesday, March 19, 2013
Tuesday, March 12, 2013
And today I would like to share my scars today. Months later after my hair has grown back and staples long gone, bones have healed. Here is how I am today.
Monday, March 11, 2013
Saturday, March 9, 2013
What gets me through things is
Tuesday, March 5, 2013
Monday, March 4, 2013
Throughout my almost 8 year stint of Cluster Headaches and benig chronic I have never had any consistency of headaches in time of day. They have always been sporadic. As of lately most of my bad attacks are occurring between 11:30am and 1 am. Which for me is weird.
This past few weeks I been
Wednesday, February 27, 2013
Sunday, February 24, 2013
I wrote about this already. Accepting. Alot of these blogs intertwin.
You or other might say...." A day off???" for someone who is on a disability pension that sits home? Yes I take a day to me sometimes. Lately more than normal. Its ok. It is ok to do jack squat. I think it was harder for me to accept a Me Day than anything. My whole life I never been lazy. I am a very hyper person who would rather be outside working or doing something than sitting doing nothing. I say to my wife all the time...
Sleeping is for when your dead.....and she laughs. I dont like sleeping. I dont like sitting around doing nothing. I like waking up early and getting the most of my day.
Tuesday, February 19, 2013
So if days like today.
Sunday, February 17, 2013
There is no greater pain on the planet known to medical science know to mankind than "Cluster Headaches".
Friday, February 15, 2013
Thursday, February 14, 2013
Monday, February 11, 2013
His actual real name is
Friday, February 8, 2013
Tuesday, February 5, 2013
I started this blog int he middle of December of 2012 and its just the very beginning of February 2013 and almost 1500 hits so far. I have had over 102,000 You Tube views on my videos. Over 76,000 on my one video alone. I know by today's standards with video hits going viral overnight of a million hits but I am very proud of this. For a disease that affects 0.01% of the worlds population. And I live in a city of over 350,000 and there is only 2 other survivors I know of, its a very very rare disease.
And to have this recognition by loyal viewers is just incredible. When I made my
Sunday, February 3, 2013
This blog today is about our children and cluster headaches. While I can not write about myself being a child having cluster headaches although I am a kid at heart. I am writing today about our kids who watch us with cluster headaches.
Sunday, January 27, 2013
I want to thank my
Friday, January 25, 2013
Monday, January 21, 2013
How does one with Cluster Headaches explain to a non Cluster Headache person?
To be perfectly honest there are many I have heard over the years. From Suicide Headache, Ice Cream headache, Ice pic headache and more
It has been described as 30x more painful than child birth. Described as worse than being burned alive. Similar to being shot point blank and living.
Thursday, January 17, 2013
Wednesday, January 16, 2013
There is nothing more in this world that turns my stomach more than seeing
Monday, January 14, 2013
I have written to CBC, Fifth Estate, CNN, 20/20, and many more. This disease needs awareness. I have seen |Dr.Sanjay Gupta do interviews and reports on DBS. But not on DBS with or just Cluster Headaches.
I been on a mission to
Thursday, January 10, 2013
"my friend sufferd from these and he said he would rather be stabbed or have his arm broken then to suffer from one for an hour , he commited suicide last month leaving a personal note to me claiming he cant deal with the pain , i feel for everyone with this illness"
Ill be honest. I cried. I cried as I felt like we lost a family member.
Saturday, January 5, 2013
If you were recently diagnosed with some illness or Cluster Headaches like me. I highly recommend
Wednesday, January 2, 2013
I pray for all of you for health and happiness. That maybe this year a cure be found. That all though I had Deep Brain Stimulation Brain Surgery and whether it works or not a cure be found. DBS nor illicit drug use is NOT a cure. If anything, its a band aid.
This year my goal is to loose weight. I had written earlier and about smoking and weight and I to this very day and pray forever I remain smoke free.
Friday, December 28, 2012
Said chances of adoption were slim because he is a filthy stray and older.
I couldn't bear him being Euthanized.
Wednesday, December 26, 2012
I wanted to post some videos on Cluster Headaches for reference for fellow survivors and people wanting to gain some information on the disease and also what us survivors endure daily if your chronic like me or episodic.
Here is is my YouTube channel "ClusterHeadSurvivor"-Please follow my channel. Add me as a friend and or message me
Now here is a collection of videos from YouTube.