Tuesday, June 4, 2019

Stem Cell Treatment

I went from not wanting to be here to being on a private jet flying to NYC all because a friend offered to help for no reason other than being a kind decent human being by giving a very sick friend HOPE.

Yes, that is where it began.

You know Mike Smith from the hit TV series" The Trailer Park Boys" or the band"Sandbox" or you know Mike from Nova Scotia. Either way. I knew Mike the same way you most likely did as "Bubbles". The thick glass wearing, kitty loving sweet innocent character. I know him now as Mike. And that is who he is to me. Not the TV/movie star, not the musician. He is a friend and hero to me. I know I met him as a fan but was just happy being his friend.

In April of 2019 I was struggling pretty bad. It all started last September of 2018. I had then waited over a year to see the Pain Clinic. I had such high hopes and was so optimistic that going to see a physciatrist (Fiz si a trist)with a potential procedure was my last and final hope. I had seen my GP, my neurologist, my neurosurgeon all with hopes of a diagnosis so I can get treatment for this this undiagnosable head/neck pain I been fighting with for 4 years on top of all the 3 other headaches.

Everything I have gone through since 2005 has been a  direct result of cluster headaches. Everything.
The 4 brain surgeries, the PTSD, the TBI, the 4th headache/neck pain. The constant 2am stomach aches, the 3 hours a day on the toilet, the memory loss, the pain....im sure you get what I am trying to convey. Cluster Headaches or Suicide Headaches is Trigeminal Cephalalgia Neuralgia. The worlds most painful disease known to medical science!. And trust me 100%. I take ZERO pride in that statement from doctors. I would have been so happy a doctor diagnosed me and said oh its 73rd on the list. go home and continue life. If that was the case, then I would have never hard 4 brain surgeries or a plethora of health problems. This statement of "Worlds Most Painful Disease" did not come from me. I take no pride nor is it an award I care to bare. So don't think for a second I am trying to Trump anyone's pain.

I don't want to focus this blog on the relentless suffering for 15 years. But I can tell you everything is a direct result of cluster headaches. All the surgeries, the weight gain, the medications that are killing me, the pain, the pain from pain...its relentless and exhausting even thinking about it.

Along the way. I lost myself.

For 4 years I been hoping to get a diagnoses for this 4th headache/pain. Seen every possible doctor my GP and I could come up with for help. Numerous x rays, several cat scans, a MRI, a long list of trial medications and finally one medication that gave me 40% relief. Ketorolac (Torodol). If you google it or know of someone in health care they will tell you that it is only supposed to be used for 5 days. I been on it 3 years!!!!. Do you have any idea how much damage I have done to my body from it? So stop right? That would be the logical way of handling it or trying another medication? I did, Many. More than I can even care to remember. Go without? I am 100% bedridden without meds. Literally I have tried to crawl to the bathroom without it.

After a YEAR wait to see a physciatrist at the pain clinic, I was told verbatim " Sometimes, we just don't know. Going in surgically is to much risk and the meds you are on will end you life sooner than later". Wonderful I am going to die soon. I said id rather live 5 years out of bed on Torodol than 30 in it. And left. They suggested I join a support group almost a year from my appointment. Stupid. I needed that group 15 years ago when I got sick not now.

Since that appointment in September I stopped vlogging, I went home to inevitably plan my death overtime.

I don't think some grasp the severity or long term damage being sick can do to a person. Either the medications come with side effects which require more medications to offset the side effects, medications destroying my kidneys and stomach. I waste 1-3 HOURS a day on the toilet. And its not fun to put it mildly. Every day I got 1% worse. Never once in 15 years did I ever get 1%  better. I got worse every day. Day after day, week after week,  Year after year. It takes a toll on a persons mental capacity what they can withstand. I'm not crying a pity party here. But it would take a toll on the strongest of humans and strength isn't from lifting weights. I've had the shittiest human beings hurt me, and I moved forward. I had the worst possible painful disease and kept going. I had numerous brain surgeries, trials, medications and never got relief. I lost my career, my vanity, friends and relationships all because of this fucking disease. A disease that is 20 x the national suicide rate. It takes a part of you that you think is gone forever. Over  25,000 hours of my life Ill never get back.
I was a day maybe two from cashing out. I had...enough. For months Id day to my wife. Don't be sad I'm gone, be happy I'm no longer in pain. And as much as I worship the ground my wife walks on. She couldn't help me.

Since September 2018 it got worse everyday, I had reached my boiling point months ago, It was so hard. I was literally trying to make it to midnight everyday. I went to bed early but if I made it to midnight in my head I won another day. It got so bad I I couldn't stop crying. You cry in pain but this was different. Not depression. But sick and tired of being sick and tired.

Mike and I had been chatting off and on, he recently helped me with a couple things. He was kind and made a shout out video to a friend of mine who passed away. Then my truck got broken into and the pricks stole the cards for the homeless. Which Mike replaced and added a shit ton more. 36 in total of $7 cards. Mike and I were chatting a fair bit. I really had forgotten about who he was in life and he was just a buddy who lived in Nova Scotia.

One day in April. I think ( could be wrong) the 25th, he caught me at probably the lowest part of my life. I was ready to go, planning it in my head, how where and try not to make a mess for my family. I had enough. All the pain, all the hurt,(two completely different things). I had enough. I wanted to go.
And Mike got ahold me of  for no reason other than hey man....how ya doing? And for whatever reason. I just verbaly dirreah all over him. I wasn't remotely concerned with who he was or I could possibly have him hang up and think that guy is fucked. But he did not. He said"I wanna help you". At first I thought  thanks Mike, I know who ya are and all but I know ya can't help me. "No, I am going to help you "for real....and then a light switch went off and I though Oh shit, he is dead serious....Ok Mike, how? I know the best Stem Cell specialist ! Prior to this conversation I had ONLY heard of Stem Cells and knew absolutely nothing about it.

No, Mike knew I was sick but had no clue how bad my life was in a 24 hour schedule. Mike asked me to email my medical story in my words. 6.5 hours it took me and its a 45 min read going fast. He said I'll send this to my Doc in the states and we are gonna help you!

At first I was blown away, I didn't know what to say other than thank you. An offer no one has given me before for all the crap wrong with me, I was told here to go home. Now someone wants to help me...it gave me HOPE. Something I lost a long time ago. My wife and I had out HOPE bags year round focusing on Christmas time but I never knew what hope was until I lost it completely.

Mike lit a fire in me that's been dead for years. I lost who I was or who I was to be.Its hard to explain an invisible disease to people who THINK they know or are greatly misinformed with what happens to me. My life in the public eye would have been easier had I been visibly sick. And when I am visibility sick. I hide.

Within a coupe days a GoFundMe was up, Mike was cranking out videos on Cameo.com to raise funds. Mike had set a goal in mind because of the costs involved to get treatment, fly me there, hotel, food, taxi etc. It was NOT cheap. But a procedure, a chance at a better quality of life that Mike believed in as he had personal experiences with people and Stem Cell Treatment that had very positive results. Mike seen first hand the benefits. And to me, it couldn't happen fast enough.

That day without a doubt in my mind and including my wife's mind and heart. Mike Smith saved my life. I would NOT be here if it wasn't for him. Period. And in all fairness I was happy to just to call Mike a friend and chat. I needed his friendship more than ever. My wife supports and loves me. she has been my rock and by my side through all the terrible things that has happened to me in the last decade, but Mike was a godsend. A gift. Not a celebrity who had the financial means to Make a Wish for a very sick man. Lets get that out now. I don't want ANYONE to think for a second it was MIKES responsibility to pay for anything. He did for me what was priceless. He saved my life. That you can not cash a cheque on. No one forced him. It was a chain of events that happened like domino's and I never asked Mike for a single thing, nor will I ever. I know he is famous, I know he is a celebrity. But put that aside for a minute. Forget who he is. He is a human being who found another human being at the worst and lowest part of his life and saved him for no reason. And the very first thing Mike said to me (hope he doesn't get mad) is that he doesn't want an ounce of recognition. Yet I thank him every time we talk. Who wouldn't? If Mike worked down the street from me and was not famous, my friendship would be exactly the same. I might see him more, but that is it.

Just when I hit rock bottom, was the lowest of low. At my worst point. A friend helped me and that is what Id like YOU as the reader to take from this. Not some celebrity who wrote a cheque because he could. Mike did this because he wanted to. So please any nay sayers out there, please remove your head from your ass and know there was no motive behind anything.

If anyone wonders why, we same age, like same things have same interests and goals in life.We just two dudes who happen to appreciate one another. End of story.

Funny, and classic...numerous friend request  popped up. Yet for years I been suffering these people don't call, don't contact me and now wanna know me cause I am on TV? Classic.

For starters, I know exactly how lucky I am. 100%. You don't have to tell me, remind me or say " nothing ever happens to me, why can't this happen to me"? That is a question only you can answer yourself. To Kristen and I, we feel like this was winning the lottery. I said almost everyday for 15 years that if I had won the lottery Id spend every cent trying to feel better.  Just a better quality of life. It is all I ever wanted. The sicker I got in life, the less I cared about my hobby or certain things in life. I focused on hours or minutes I wasn't in severe pain to just being happy to walk the dog or get chicken at Costco. Literally that was the highlight of my weeks. My wife and I wouldn't plan things because chances are Id be in to much pain, arrive late, leave early or not go. That has been my life for a decade.  My wife and I's life revolved around me, my pain and doctors appointments. Do you know I seen more Doctors in 2 weeks than friends in an entire year? And for anyone wondering. A text, a facebook message is NOT REAL RELATIONSHIPS. It is an extension but in no way any part of having human contact. Being isolated at home sucks. I spoke many times to Mike about  isolation and mental health. Human contact is very important. I think more needs to be done in this respect for mental health.

Someone said to me recently...What do you mean you have no time? Umm last week I was down for 120 hours....you work 40 hours a week. What do you mean what do I do with my time? Pain is a full time job with more overtime than you will ever do! I wasn't mad. Just people have no clue. They assume that because they had a migraine once or back pain that I must be able to tolerate it like they do. As far as I know and doctors here have told me. I am the only case...so how could you possibly compare? I dunno.

So as the GoFundMe was going, my local news station CTV London did a news story on us. Then Halifax Global contacted me. And since have seen it on hundreds of websites and radio so it looks like we made the news!  This helped create awareness not only for what Mike was doing but the disease itself.

Fun Fact: NO ONE ever has 1 cluster headache. So if you think you had 1. You did not. This is a very rare neurological disease of the brain in the hypothalamus. This isn't adjustment with a back crack or by drinking more water. There is NO CURE. and most of us cash out, try it and don't succeed. Please for the love of all survivors out there. Never tell anyone of us "Its just a headache". They don't do multiple brain surgeries for just a headache. No NARCOTIC on the planet is strong enough to stop one of these. Typically, pure oxygen with a non-rebreather mask can help shorten an attack. Pscilocybin has been a very effective treatment but again not a cure. There is other treatments that are beneficial yet not everyone reacts the same to medications. not everyone can tolerate it and others it doesn't work or stops working. Please understand I have my own version of this disease and if sadly you have it then you have your version. No two cluster heads are the same.

Mike had cranked out over 100 cameo videos, we had raised almost $9500 on GoFund Me and at the last minute Redecan.ca the largest marijuana producer in Ontario found out about this and offered return airfare. Incredible. It was happening. for the first time in years I had HOPE. People say all the time. I hope it works out, or we hope to see you again. That is not the same thing as holding on to a thread for dear life and someone offers you HOPE.

All this was happening so fast. Our heads were spinning. It was surreal and hard to comprehend. I felt like a celebrity because people were talking about me. It was weird and very overwhelming. I can totally see why some celebrities have difficulty handling everything. Overwhelming doesn't even justify the emotions we both felt.

Next thing I knew Mike had made a detailed itinerary for us as neither of us had been to NYC let alone anywhere in years. I was scared. But Mike took care of every detail from the flight to hotel to food to taxi. We could have NOT done this without him.All the time the set aside for us from making GoFundMe to cranking out videos and setting all of this up he did by himself on his own time. I never once asked for anything. He did everything.

We flew from here in London Ontario to New York and had Stem Cell Treatment.

The procedure was easy. They said it might hurt or pressure but it did hurt. Not much but a poke and sensation that I don't think I have ever experienced so just a foreign pain which I welcomed with open arms considering the last 15 years, and having my head drilled into awake. So to me this was easy peasy.

The nurse came in, prepped me and then Dr. Calapai came in, froze the area and then removed bone marrow. We then waited for the stem cells to be extracted. The nurse came in shortly after, gave me an IV and then I had a nasal canula type inhaler for stem cells and then last a nasal drip into my brain.
I think a total of one hour and a half there? It happened very quickly. I regret not getting a photo with Dr.Calapai.

Literally the next day my "Aphasia" reduced 80% overnight. Aphasia is something that started about 6 months prior to all of this and was progressing everyday worse. Aphasia is difficulty speaking, either a stutter like or can't get words out of mouth. 6 months ago it started once a week then once a day then it got so bad it happened almost every time I spoke. Also the doctor asked me NOT to take any anti-inflammatory for a month. Which I welcomed because Id eat 6 a day just to walk because of my back and scatica. Literally overnight 50% sciatica pain gone. It still  hurts and its borderline take a pill but because I hate pills I just rather suck it up. I only took Robax (Costco brand) so I could get out of bed and walk. Sciatica pain is relentless. I got 4-5x a day spikes where it could be so bad you could shed a tear. Well, I haven't taken 1 single anti inflammatory since I been home. Only once I thought I wish I could take one but did not. Pretty fucking good if you ask me.

So the first night there after treatment I was wound for sound,  pure adrenaline ! I usually am in bed by 9 so it was midnight, I had NOT taken my 9 pm meds for my head (torodol) and thought maybe I should not take my pill and see what happens? Stupid mistake as Stem Cells only been injected less than  12 hours ago. I paid for it dearly the next morning puking and lost 7 hours in bed feeling really bad. I guess I got overzealous. After that, I thought ok Ill try again in a coupe months but cut back on dosage. Ill give the stem cells  chance to heal me. I realize I was just excited.

So now its June 4 as I write this. My aphasia is gone 90% now. My back is slowly getting better. Being spring I am trying to walk my dog weather permitting everyday. I know my head and the 4 different headaches I survive ( Clusters, Migraines, Tensions and 4th undiagnosed headache) will take some time. The stem cells can take up to 2 years to be at maximum effect and I am OK with that. I been sick almost 15 years. What is another 2 years? Nothing in hindsight.

One thing that I never expected was this gift of joy. I literally have woken up every single day with a gigantic smile on my face. I forgot how much I never smiled anymore. How I lost that. My family has noticed the change in my demeanor, my character and overall well being. I look back at the last 15 years and its a shock I am still alive with what I went through. I was told by everyone I was a bad ass mofo who was strong. Yet I never once felt strong. I felt weak and defeated just about everyday of my life. As if I was drowning and only  breathing through a straw getting a gasp of air every so often.

I rarely complained to the people I love how bad it was....and it was. no human should live the way I did. No one should suffer that much. It really is a miracle I am still here.  The disease took so much from my life. I lost a marriage, friends, a career, my son, my ability to travel and enjoy life, My self worth and mental health, and my vanity. I've lost over 25,000 hours of my life bare minimum. Do you know how much 25,000 hours is? That is almost 3 years of my life. I been sick for 15 but 3 years was 100% suffering from just Cluster headaches!!!! That is a low bare minimum number. So for the next 3 years of your life you will suffer every nano second of every day of every minute for 3 years.Eventually it wears the strongest of humans down. Put that into perspective for a moment. Have you ever rammed your head through drywall because your brain hurt so bad you wanted to knock yourself out? Ever punched yourself so hard you gave yourself a black eye? Ever broken 4 headboards from pain smashing your face into it? Ever had  a headache so bad you wanted to kill yourself just to stop the pain? Have you ever jumped in front of a bus because you seen no hope? Have you ever been afraid to go to sleep? I have for 15 years. Everyday.Have you ever planned your own suicide? Ever had a disease that was invisible and some thought you were faking it or playing it up?  That is a Polaroid snap shot of my life. That isn't even 1/1000th of my life.

This all changed in April this year. When a friend reached out and offered help. At the absolute lowest part of my life. I was planning to die on my terms. I wanted to die because I had enough, my quality of life was diminishing by the second. My hope was gone 100%. I was ONLY trying to see midnight and my wife's love could no longer keep me here.

That all changed when Mike offered something no one has offered. HOPE.

At first I didn't take him seriously. Why because how could he help? I knew who he was but how? When he said he knew a doctor personally who wanted to hear my story, I felt I just won the lottery. I was literally planning my suicide  just before Mike spoke to me. Mike knew I was sick. But not how sick. I've never asked him but as far as I knew he only knew about the clusters. Not everything else. When he found out i think he fully understood how serious I was in dying and how bad my life was.
He knew right away I wasn't depressed. I wanted to live but why? My wife and I could barely plan a movie on the weekend. Every time we would pre pay movie tickets we knew most likely we couldn't go. We had not been anywhere in years. The highlight of my week was usually getting roasted chicken at Costco if I felt well enough to leave. Yet if people seen me getting groceries they thought there is nothing wrong with him.

I haven't even mentioned isolation of being sick. Anyone who is sick will understand people don't call, don't visit, don't ask anymore. Dunno what to say. So, it is what it is. Whoever is healthy and reads this please take my advice.....facebook is NOT real life friendships. If you have a sick friend, human contact is what we need. Not some stupid fucking meme or poke. Not even texting. GO FUCKING visit them. I see more doctors in 2 week period than I see in a year!!!  I deleted 300 people off my facebooka year ago. Why? I had not heard from them in over a year. Not once. I wasn't on fakebook for popularity contest. Then when I ended up on TV with all of this the facebook friend request was overwhelming. I thought to myself, where the fuck you been when I was suffering?
And because I am friends with a celebrity? My real friends were my friends before this and will be after. The dumbest question I been asked is "Where you been?" I fail to understand the question as I am sick and you are healthy so please ask again in a way I will understand! I know I was there for them when they had struggles in their life. I must be a really shitty human being for people to not visit me.

My 3rd brain surgery, was a result of an infection travelling to my brain. So they had to remove everything and then re install everything which meant a 4th brain surgery. So its literally my 40th birthday. Yup, the BIG" Four O". I'm laying in the hospital room on my side. I wake up and can hear my wife crying relentlessly. I ask whats wrong? She says nothing. I said is it the staples in my head? No, is it my chest? No. Why are you so upset?.....Where is your friends? She asks. 4 brain surgeries, 1 40th birthday and my closest of closest friends of 25+ years no where to be seen or heard of. So personally I know it felt to be abandoned. Yeah a shit story. Yeah it hurt, Yeah it sucked. But they have to live with it, not me. Cowards and nothing more.

So this opportunity for Kristen and I to have a better quality of life was welcomed with open arms. Even if it didn't help. I was 100% willing to try and keep trying because ultimate Mike saved my life and I was grateful beyond words.

I know my head will take time. It may not help me, but it may help me have a better quality of life. Taking away the aphasia was nice but it wasn't pain. Taking half my sciatica pain away meant immediately less anti inflammatory which means less stomach aches.  Mental health is 100%. I have not felt this alive in 15 years, Seriously. You can NOT punch the smile off my face. The moment my eyes open I am smiling. I go to bed smiling. I smile during the day for no reason. I can't remember the last time I have done that. Even my wedding with Kristen I was struggling to make it to midnight and feared attacks.

It has been just over a couple weeks now. I look forward to the next 2 years of getting better everyday. I look so forward to the future now. We have even planned things this summer. Something I haven't done for years. My wife deserves a healthier me. She has been by my side from the worst of it and I am so grateful she is here to see the HOPE we share together. She never ran off like a coward. She has never once complained to me about my health and has always put a brave smile on for everyone else. She is an unsung hero PERIOD. Mike is my hero. And will always be.

As for anyone who thinks Mike shoulda paid for everything outta pocket or think because he is doing well its his nickle.....remember he saved my life first for free. He made over 100 videos on his time and uploaded and sent each video on his time. Mike took care of every single detail from the flight to hotel to food to taxis and places to go see while there. He literally texted me 100 x a day to ensue everything went smooth an concise and even now we talk about my health and how things are going. All this while working full time, raising a family and all the obligations that go along with his life. Yet every text I sent him I felt guilty taking time away from his family. He never once complained to me or said back off. I know Mike lives a life Ill never understand and I live a life he doesn't understand fully. But that doesn't matter to neither of us. We are friends. That is it. That is all that matters to me I wish him more continued success in life and not remotely jealous of his success or lifestyle nor will I ever be. I am happy for him. What is in someone's wallet means jack shit. What is in someone's heart does. How you treat others is how you are remembered.

In time I am confident my health will get better. My goal is to get off Torodol. Its destroying my kidneys and the 1-3 hour a day bathroom I am really tired off. If I get off Torodol, that means my head will be better, my kidneys will be better. I wont have 3 hour bathroom visits. I will sleep better and not on a controlled sleep patter as  everyday of my life is controlled when I sleep and wake up because of this damn medication. I can not sleep in, I can't go to bed early and within hours without the medication I am throwing up moaning in bed lifeless. I hope in time ill get better. If not, back to the drawing board but I can check off how other things got way better.

I am hoping this ends up in a documentary to help others who lost hope. To help those considering Stem Cell therapy as a positive experience to help them with their health. In fact I have refereed 2 people already to Dr. Calapai! I have a buddy who really could benefit from it.

That is the ONLY thing out of all of this I really wish that could happen. I have friends who are sick with other health problems and I would love nothing more than to see them get treatment too, It sucks getting help and not being able to help those you care about.  That would have been the one wish I had through all of this is to help others.

You maybe reading this not knowing who I am as a person but I hope you comprehend how grateful I am at this. I never asked for any of this and know 1000% how lucky I am.

I thought this blog today would update some questions people have had about my treatment.

I am so so grateful for every single person who helped with this and know your investment in me is working. Kristen and I are humbled beyond any measure of words. We thank you from the bottom of our hearts. I owe my life to Mike and there is nothing I wouldn't do for him. Thank you www.redecan.ca for the flight, thank you Swearnet/The Trailer Park Boys for all the support, thank you to everyone who donated and especially for my wife for never giving up on me.

Never give up hope. Your life can change in a nano second for the better.

Thank you everyone.


  1. With you every step of the way my friend.

  2. So very happy for you. May your healing continue and even more joy enter your life. Sounds like you have a friend for life in Mike ( Bubbles)

  3. I am happy that you smile everyday. thinking about the suffering you have had and how things are now looking up, WAY UP, made tears stream down my face. you deserve all the joy and no pain. heal, godspeed. there is hope and there is love for you