davin.net - Hello Life :) --> -->



This is my new blog.. It's about living with ALS, life hopes and dreams and everything in between.


Hello Life :)

This is my new blog. There is so much I have learned in my life so far that I would like to share with you all. Thank you to all my dear friends and family, I love you very much

I have now recently been diagnosed with Amyotrophic Lateral Sclerosis - ALS - a rare and fatal neurological disease which really sucks.

Hopefully some of the resources and my experience here might be useful for other people who are suffering from this awful chronic illnesses. The rest is simply an attempt to stay positive in the face of a devastating disease.

FEBRUARY 2023

24 FEB 2024 - Maya Riviera

What a beautiful place. The weather was warm it was perfect. So good to swim in the ocean, and the hotel has a huge pool with several pool bars. The best chance to relax in the warm sun and give my body a chance to heal.

Karen and I did the meditation courses together and it was so nice to be able to share this experience. So I have just recently returned from probably one of the best and most expensive trips I have taken in the world and it was worth it!

The best part about doing the meditations is that it feels like it migh really be working. It is certainly helping with my atittude and given me the chance to relax and regain some energy plus a week long all included seafood buffet was also great.


24 FEB 2024 - Healing Meditation Retreat

For a week I stayed in Mexico and attended a healing 'illumination' which really was amazing. We did a lot of meditations, including one that started at 4am for almost 4 hours. Time dialated during the meditation work and the experience changes its meaning. It was truly a great experience although very expensive it was still worth it.

I am so grateful to receive the coherence healings and a new love for life.

The meditations and lecture series were presented by Dr Joe Dispenza who has a lot of resources dedicated to healing through meditation.

Here is his website [ Dr. Joe Dispenza ] The week was a combination of neuroscience, meditation and Quantum field theory which I really enjoyed.

19 FEB 2024 - Wheelchairs and Handrails

I am feeling quite a lot better than I did just before having the stemcell transplants. The side effects have worn off for the most part and I have had some moments of inspiration.

Here I am adding handrails to the outside of the elevator I am building in my new workshop / Factory farm building which is going to be a great place for creativity.

Next steps are going to be to get a 3D printer and put in some work benches. Maybe we should finish the walls and electrical work first (based on past experience)

9 FEB 2024 - Stem Cells and Jumbojets

Drag Racing jumbo jets for the cure to ALS at Vancouver International Airport. I went to Houston again for a second treatment of Stem Cell transplants injected into my spine. This time these cells are my own cells, cloned from the first trip I made in December last year.

Since they are injected directly into my spine there is a greater chance that they will be able to find the places in my brain and spine where the motor neurons have been damaged, and then hopefully regrow new ones.

This is all experimental clinical work and I am the first person in Canada to be trying this as a cure for ALS using this specific treatment. My body is now officially a science experiment and right now I feel pretty terrible.

I have splitting headaches when I move and my body feels as if I have been run over by a snowplow. These are expected side effects however and these symptoms should improve in a couple of days.

2 FEB 2024
Squamish Berry Cheesecake

This is cheesy but the sour cherries and lemon really help make it.

I am so grateful for my Mother Arsine Victoria Peterson. This cake is inspired by her, the best cook, artist, Computer Scientist, Adventurer and Mother ever.

My recipie is nothing as close to her creations but it was the memories of Mother making cheesecake waiting for it to bake and hope it wouldn't crack with sweet buttery graham craker crusts and cherries that convinced me that Sacha and I should cook one today.

It is these simple things, with the bonus of actually collecting fresh eggs from the chickens. Next spring perhaps with fresh berries from the gardens. Winter is really tough for me and I can feel my fingers getting numb while I am typing this even though its warm inside.

JANUARY 2023

29 JAN 2024 - Upper Squamish Valley Flooded

On Monday night at midnight the Squamish river broke its banks and flooded the Upper Squamish Vaelley. The cabin was boat access only for a day.

So we've gone from no water to lots of water pretty quickly. I managed to get the pump fixed a week ago and now its flooded. Its not a big problem since I have a warm fire, lots of food and a friendly cat.

It will drain pretty quickly, good thing the house is on stilts. Every coup[e of years it does this. Also the flooding is made worse when BC Hydro opens up the Daisy Lake hydro dam.

14 JAN 2024 -Sky Pilot Jan Jam

What a great evening. Even if I have no running water because the pipes are frozen now, Matty and Eric came over for a couple of hours and we played some music.

things I am grateful for today:

  • Good Friends
  • Rock and Roll
  • Tequila

The Sky Pilot Room is the space where we have a music studio setup in which we can jam, record some tunes, have fun and hang out. Oh Yeah and its nice and warm too!

This is where we run the radio station, broadcast music and random experimental stuff into the forest, the Internet and beyond. I also have a MOOG synthesizer which is pretty incredible fun instrument to play with and use to create new and interesting sounds.


13 JAN 2024 - FREEZING -14 Celsius

For Christmas Santa got me a weather station, which is really a fantastic piece of kit. It measures inside and outside temperatures, wind speed and direction, relative humidity, barometric pressure and shows it all on a neat little tablet screen inside where its warm.

things I am grateful for today:

  • Love my Family
  • Love my Cat
  • Love my fireplace

Unfortunately when the temperature drops below -10C here all bets are off for a comfortable life in my poor little cabin. I get my water from a shallow well with a jet pump and pressure tank. Despite the fact that I have the pump in its own heated insulated little pumphaus, and there is piles of heat trace and two heaters sometimes something freezes and breaks.

Now for most of the time its cool to live in the forest in Canada but yes there are some times when it really is well freezing and not cool anymore its.. just difficult.. and today is definately one of them!

So now I have no running water and that sucks. Now people might ask why? Why wasn't the heat trace working? Why is the water full of iron? Can't you make it better? How can you live like this? How many people have decided to try and help me? How come its still not working? Why.. WHY?. WHY?? Well, its just because today thats just the way it is!

I said this wan't going to be a blog where I complain all the time so anyway thats it for now. Thats also why you haven't seen any posts for a while.





11 JAN 2024 -Towed in the Snow

When the Plugin Hybrid Electric Vehicle PHEV doesn't start it doesnt matter if you have winter tires or not!

With a full tank of gas and a full charge on the lithium Ion battery you could power a spaceship with, you would think the car would have been smart enough to start its own engine BUT NO. Instead it died right in front of me in -13C out of cell phone range. Seriously someone could die here.

things I am grateful for today:

  • WiFi Calling
  • BCAA towing
  • I have a pickup truck

So basically after our last snow fall I manage to get into the car with my walking sticks and start the car to go in to town to get food. Instead of warming up the car with its built in engine the stupid car decided to run the heater on max off of its tiny 12 Volt on board toy scooter battery.

So no matter how hard I tried and whatever buttons I tried to press, instead of starting the engine to warm the car it died in about 2 minutes right in front of me and flattened its own battery.


8 JAN 2024 - Pretty Winter Snow

It has finally snowed here now. The first week of January has been cold and wet but at least it hasn't been freezing and snowing which is fine with me. When it freezes here sometimes my water pipes freeze and then I am in real trouble.

Anyway now there is real snow today. Its pretty, but after a while snow gets pretty annoying. Since I can not go snowboarding anymore, I am not enjoying it so much.

It is nice to be inside by the fire since now I have discovered that when I am cold my legs go numb in a couple minutes and I can't move them or move my toes Its pretty scary when I can't feel my feet and I can't move them.

The snow is really soft and pretty in the sun with blue sky in the cedar trees. I will have to plow the driveway before it really freezes solid.

7 JAN 2024 - Winter Tired

Winter hasn't even really started yet and I'm already tired with my winter tires. Its time for winter tires. I want to say thank you so much to my friend Nathan who came over yesterday and helped me put on my winter tires. Normally its fairly straightforward with the right tools but I can not even lift a tire now.

The roads here are merciless, dangerous icy, messy twisted and deadly. So many cars every year go off the the highway between Squamish and Whistler, and also on the side roads in my neighbourhood too. So I left it a little long but better late than never for Winter tires in the Sea to Sky.

After the stem cell treatment I have felt a little sick, strange for the first week, then mostly back to normal except that normal means not normal. Normal means not being able to move my legs properly and falling down unexpectedly.


DECEMBER 2023

30 DEC 2023 - New Years Eve - Eve

I am grateful for my life. Wishing that this new year brings health and prosperity to us. Thanks Jules for having a New Years Eve Eve party and hosting a very groovy group of people at her studio. I figured it was time to teach my new stem cells how to grow into some dance muscles.

I really hate falling. Its not fun to have your legs suddenly stop working and collapse, especially in public, like in the supermarket parking lot!. So I don't really go out much now. Except at for New Years and Jules party I got to go out and fall down at her place instead. I did try and dance though and at least that was more fun than the parking lot.

25 DEC 2023 - Family Christmas

Today is Christmas day and we are celebrating our happiness and prosperity as a family. It is not everyone who gets to spend time with their living relatives at this day and age.

We all have dreams, memories and burdens to be released and resolved. This Christmas was a great time for our family to be together. Sending lots of love to all our family and friends.

24 DEC 2023 - Tato Mouse in the House

Its so nice to get breakfast in bed on Christmas Eve morning. In fact if I look fondly back on my years of making Christmas breakfast for my dearest sweetheart, older parents and younger children and I think that in 50 years I have never had breakfast in bed at Christmas except for today.

Breakfast with a mouse in a house

Not ony is Tato a deadly and quiet hunter, he has decided to bring his catch inside to share in the house.

There are mice in the trailer, and mice in the pumphouse, rats in the chicken house too.


19 DEC 2023 - Green Smoothies

After the treatment, my whole body ached for days. It feels like the flue and it was really difficult to move around without lots of pain and discomfort. This is apparently normal however so since the side effects were not life threatening I managed to just suck it up and get through it.

Now I am trying to get lots of rest and adjusting my diet to include eating (drinking) healthy foods to give the new stem cells a chance. Specifically I am trying to eat Anti Inflamatory Foods and avoid sugar, red meat and a bunch of other stuff in this list of Top 10 Inflamatory Foods . Below is a quick list of ingredients. While tomatoes are a good addition, as are prunes this recipe is all about the greens.

Green Smoothie Recipie

  • 2 cloves minced garlic
  • 2 cup baby spinach arugula
  • 1 cup steamed garlic scapes
  • 1/4 cup equivalent
  • 1 cup chopped celary
  • 1 whole Avocado
  • 1 cucumber chopped
  • Beets and beet greens when in season
  • garden fresh Kale
  • Any fresh greens,lettuce,broccoli etc
  • salt & pepper seasoning taste

The green smoothies are actually not too bad once you get the right mix of seasonings and vegies. This is a big credit to Fred who convinced me when were visiting him in Mexico.

I have found a good serving of raw garlic and ginger give the drink some kick best taken first thing in the morning when your stomach is hungry.


14 DEC 2023 - HOPE BIO

The facility we are visiting specializes in stem cell research. We had a tour of their labs and I was very impressed. We also met the CEO Donna Chang who founded Hope Bio and is actually Canadian. I am really pleased to have this chance to try an incredible new form of treatment that I hope will help me recover from this disease.

First they took fat tissues out of my body with a syringe. This was done at a different facility usually for plastic surgery where the fat is extracted in a process called liposuction, which actually is a pretty unpleasant process. Fortunately accross the street was a really great mexican restaurant with delicious enchiladas and margaritas!

The fat contains stemcells which are then taken and grown by the lab to turn into cells for future treatments. In this session however I was given a dose of donor stem cells. These cells were injected into my arm at the lab in an IV and into my spine with another needle in a final treatment.

This night after the treatment my whole body ached and my head too. This is to be expected so I was not worried but it was hard to sleep. I could imagine all the 240 million new cells running around inside my body finding places to help fix and repair damaged cells. That is what I am hoping will happen to my motor neuron cells.


13 DEC 2023 - Houston TX

We fly from Vancouver YVR to Houston IAH airport terminal E. The flight is pretty good everyone was helpful and this is the first time I have travelled with accessibility concerns so it was an entirely different experience not being able to walk, to feel helpless in public is quite awkward sometimes.

I now have a whole knew appreciation for what it is like to be disabled and travelling makes it more complicated so I just want to say thank you again to everyone who helped us on our trip through the airport, pushing my wheelchair and we went through to the gate with no problems.

My family Uncle Arten and Aunt Karen picked us up from the airport and drove us to the hotel, which was such a blessing since the freeways in Texas are extremely big and complicated. Not surprising since it is the heart of American Oil as these ducts that we drive through are like the veins and arteries in our bodies I was fascinated by the incredible architecture of this city and its freeways.

3 DEC 2023 - Water from the new Well

This is fantastic! Today we have now got fresh water coming directly out of the ground from our new well site. Its just in time as winter is here now and the ground is all frozen, but not the water that comes out of the groud that lies in the water table below us.

Where I live the water table is very close to the surface, which means you do not have to dig much to find water. In fact this well is less than only 20ft deep which means there is water everywhere all around us, not surprising since we live on a flood plain.

With the convenience of easily accessible water comes all the other challenges, such as regular flooding (stay tuned on this page) and also the need to filter and treat it. Some people in this valley have spent thousands and thousands on deep wells and filtration systems probably worth investing in, to get to clean fresh water.

I have also had to make great efforts to avoid floating away and now I am hoping with this new well we will be blessed with fine drinking water.

1 DEC 2023 - Stem Cell Therapy

This is it! I am now officially registered and scheduled to visit Hope BioSciences facilities in Houston TX USA for one of the first clinical trials using stem cell therapy to treat ALS as a right to try patient.

Although ALS is considered to be a fatal and incurable neurological disease there are still new and emerging technical and biological medical clinical trials that are being tested in an attempt to find a cure. Stem cell therapy is one of these new and largely unproven (so-far) techniques with a lot of potential to help heal and regrow dead or dieing motor neurons in my brain and spine..

Specifically Mesenchymal stem cell therapy has already shown strong therapeutic potential in different clinical fields and in particular is being considered for a promising approach to treat ALS

NOVEMBER 2023

This is a Blog about a blog about Blog

28 NOV 2023 - Writing and blogging

while I am writing this, i am also writing the code to allow me to save my next sentance. For many years I was too worried about what people might say or think about me if I were to share my thoughts and ideas publicly. Now it doesn't matter since I might die soon anyway. Or not!

For people who do not know [CTRL -S] is a lifesaver. ...Talk about being thrown into the ring. Well my cat now sits on my lap and thinks he can sing. I am going to build this website from the bottom up to get the style I need. This from first principles. Lightning actually does strike in the same place more than twice.

27 NOV 2023 - New Drug Albrioza

I have just received a package with the new Experimental ALS drug OK'd by Health Canada. The drug treating ALS is supposed to slow the spread of the disease and is called Albrioza and is manufactured by the company AMYLYX Pharmaceuticals and is now available in Canada.

18 NOV 2023 - Pumpkin Banana Bread

Making Pumpkin Banana Bread

For the full recipe please see Pumpkin Banana Bread at the farm page. I am trying to post three things each day to be grateful for.

grateful for simple things

Its getting colder now and winter is coming. This was the best weekend ever for a good winter fire, playing chess and making pumpkin banana bread. We grew these huge pumpkins and its time to eat them,


Three things today I am grateful for:

  1. 10 Chickens laid 9 eggs today
  2. Sacha helped me make banana bread
  3. I can still stand up and walk sometimes

17 NOV 2023 - Honeycrisp Humble Pie

I am on my hands and knees. I am so grateful for the people around me right now! Three things today I am grateful for:

  1. Fresh water to drink
  2. Honey Crisp Apple Pie, which tastes great with real vanilla ice cream
  3. My children, friends and family

I have been falling more. Standing is difficult sometimes unless I can lean against a wall. I am so grateful to be able to even be making this post. This is for Geoff.

13 NOV 2023 - Fall Fried Rice

I made this for Craig and friends while we are doing the plumbing for the well. Fresh Vegetables from the garden beds. Delicious carrots garlic and greens.

Recipe for Farm Fall Fried Rice

1 zucchini
2 Eggs
3 cloves garlic
4 cups cooked white rice
5 carrots
6 large leaves of kale
7 beet green leaves
8 baby tomatoes
Cabbage (1/2 cup shredded)
soy sauce
sesame oil
butter
rice vinegar
olive oil
salt, pepper
chilli flakes, powder or sauce to taste
spring onions
parsley

If this looks good check out more receipies at www.squamishvalleyfarm.com

12 NOV 2023 - Spin Cycle

I need to keep my body moving so it stays alive. 30 mins on the spin bike was a good way to end the day, no one got hurt and I got to sleep well.

Time is runnning out for me and I can see that. In a way its almost disturbingly refreshing. Time is running out for everyone actually, but for me its just a lot closer so they say.

Well why is time running out
So thats a good question. Well why is the well running dry? Its not like we don't have an unlimited amount of time right? Or an unlimited amount of water? or petroleum? Hmm one of those doesn't smell right. Right?

Which of the things that you take for granted might run out first? Maybe it depends on who is the fastest runner..

Lots to explore here with fossil fuels and the collapse of modern western economies but I have to go to bed now.

10 Nov 2023- Incence present from Havaila

9 NOV 2023 - New Pump House

Finally am putting in a new well. This will be for the workshop building. The well is a shallow sandpoint which is basically 20ft of galavanized steel schedule 40 water pipe stuck in the ground with a sand point tip on the end for filtering out mud and gravel.

6 NOV 2023 - Sparking Hills

This week we went to the Sparkling Hill Resort for a 3 day healing retreat. My back has been super painful since my fall, sending sharp pains up and down my body everytime I move. I have been taking a lot of pain medicine and I know this is not good in the long run.

Karen organized this retreat for my Birthday and I am so grateful for her love and thoughtful kindness. This place is amazing. Its a spa with hot pools, steam rooms and outdoor infinity pool. Also I have to say how great the staff were and everyone was happy and respectful.

Now I am not usually one to go for this kind of thing, but considering what terrible shape my body is in now, and how broken and painful my life is I figured why not go with the flow. Have a relaxing swim in the infinity pool and watch the sunset over the lakes now that I have turned 50 years old, might as well enjoy some time to heal..

OCTOBER 2023

31 OCT 2023 - Halloween Day of the Dead

Happy Birthday to me! This is my 50th Birthday and I am so grateful for being here still on this planet.

Am I dead yet? No! Hell no. I am alive and will still hold on to this body for as long as I can. I have awesome children and a loving partner Karen, strong, caring and beautiful friends. I am not leaving yet.

I have nothing to lose now except my body, which is falling apart now but my mind, soul, and spirit is still alive although it looks like I have aged a lot.

Free Cast Internet Radio Station

Here is the link to our new streaming radio station. Free Cast Radio also on 99.1FM in parts of BC. Its lucky dip radio. Coming to you live from somewhere in Canada with love.
Free Cast Interet Radio Station stream

28 OCT 2023 - Halloween Party at the Beaumont

I am still 49 and we went out in style. Not dead yet! On Saturday night we went out in Vancouver to a Halloween party hosted by my friends who run an Art gallery at The Beaumont Studios

The Beaumont Studios is an awesome space full of galleries and artist studios. Super styling cool events and a warm vibe. Possibly the best night out ever, and so for my birthday we all got together and dressed up and had lots of fun.

We are all artists! Everyone from childhood has that talent or desire to create from scrawling crayons to spraypaint, sculpture, dance or just plain expresssions of pain and love.

I have a couple of pieces hidden here at the gallery that are older works, possibly to be restored but in the meantime a good time with friends even in a wheel chair is better than staying home in bed.

Thank you everyone, all my friends and family for a great night out!

27 OCT 2023 - Wheel Chair Upgrade

Living in the forest and being paralyzed is going to be really difficult. I dont even know how I am going to manage this. I live a little bit out of town so my driveway is a dirt road. I am so fortunate to have awesome neighbours and friends. In the winter it gets pretty tough out here. People help each other. So the best solution for not being able to walk is an ATV.

So I cant move my legs very well but I can move my arms so this is my new wheel chair what an upgrade!. I am so happy its going to make all the difference being able to get around and still hopefully be able to feed the chickens. I can't even begin to describe how devasted I am to not be able to go and bring the chickens water in the winter time.

26 OCT 2023 - Ouch! I'm in a WheelChair!

Its 4 days before my 50th birthday and I got a new chair delivered and thats when it really hit me hard. This is not the chair I was hoping for. I have been diagnosed with ALS - a fatal neurological disease and I don't want to die so soon. [Deep gratitude to the ALS Society of BC for the chair thank you so much!].

+++++++++*+ +** ++++++ +++++++ 0 (

My spine is broken and I am now paralyzed and I can not walk. I had lots of dreams for the future and none of them involved me now being in a wheel chair. I feeel horribly trapped and helpless but I am determined to get better.

Enormous mountains, vast lakes, oceans and desserts seperate me now from my body and the world I was in just a short time ago and its all happened so quickly I can beleive it makes me sick.

I always wanted to write a blog too, but this isn't the topic I was planning on either. Good night world.

I might not have much time left now so I am going to start sharing my thoughts and dreams with everyone, and also some of my worst nightmares too so if you don't like what I have to say please don't read it just don't be mean. I am not intending to offend anyone.

Facing death can be terrifying or fun and exhilerating for some but right now I am just tired and scared.

6 OCT 2023 - I broke my back !

Well not only did I break my back this time but my back has actually been broken before too.

I was only going to fill up a water bottle but my legs were weaked from muscle atrophy because somehow I now have ALS. I am a (was) healthy young (was) 49 years old male reasonable fitness loved snowboarding and swimming and life, my children, friends and family.

Well sometimes I guess things just don't turn out the way you expected. Not only that they seem to start getting worse. Its one thing when a country with enormous ammounts of wealth and power decides to invade their nearby country and murder children who are starving but when you get paralyzed there is nothing you can do about it.

DISCLAIMER

This is not a sob storry or a cry for pity. I am not asking for money (yet) but if you do read this and want to share your thoughts Please email me here davinlives@gmail.com.

I am dedicating this page to life. To the cure for ALS and a document of my experience through various treatments. I am not ready to die so in the meantime I will do my best to live life in the present and be grateful.



© Copyright Davin Peterson 2024 contact davinlives@gmail.com FID: [] v [11.28.9.11]