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December 1st 2018 End of year Report.

So, it’s the beginning of December already, and the rains have finally fallen!

Much has happened since my last blog. Terrible fires and smoke enveloping California and now we hear of earthquakes up in Alaska! We don’t talk about “global warming” any longer, but “climate change”. I guess we can’t dispute it, but won’t get into that.

Let’s talk about climate change in the realm of advances in ALS research.

I was fortunate enough to attend the Champions for Care and a Cure event in San Francisco on Friday November 11th. It was a well-attended event with some excellent speakers together with a couple of videos of Rusty Selix and Pat Quinn – two strong advocates for a search for a cure for ALS. If you don’t know them, then watch the videos on my Facebook page. Two champions who continue to fight on like many others suffering from this beast of a disease.

I continue to be blessed with minimal hindrances at this stage, and I

thank God for that.

I do my best to keep in touch with members of my local Turlock care group which covers Stanislaus and Merced counties. We support and encourage each other to the best of our ability. It’s no fun slowly losing the ability to use hands and legs, talk, swallow and breathe. All we can do is show compassion for one another and try to put a smile on our faces once in a while. Sure, it’s hard. But what else can one do? We keep looking forward to a genuine cure for Lou Gehrig’s disease, aka amyotrophic lateral sclerosis, motor neuron disease or whatever other disease out there that has no cure at this stage.

May you all have a Merry Christmas as you gather with friends and family, and don’t forget to pay special attention to those who are hurting so badly. Be grateful for your own blessings and show compassion and love for those who need it most.

 

November 6th, 2018 Thanks to all past GoFundMe donations.

It just occurred to me since my last posting that I hadn’t officially thanked all those kind people who have supported me through a GoFundMe account that my daughter Victoria set up for me when I was first diagnosed.  There were many, so I would like to mention you all again, by name. I believe I have already publicly thanked those who supported my team on the recent walk to defeat ALS, through Facebook. Those funds went directly to the ALS Association. This is over and above that. Thank goodness my condition shows a very slow progression and I’ll just keep fighting on!

So, for what have I been using my funds? Don’t be shocked, but I believe CBD oil has had a lot to do with my slow progression. I take no other medication and rely entirely on a natural product and prayer!

Unfortunately, there are a number of anonymous contributors, which makes it difficult to thank you personally. All I can say is that I am truly grateful to you and you know who you are.  So here we go with the list as I know it, in no particular order…

Gary Caine, Chris and Linda Caine, Brook Halvorson, Eric Cifuentes, Kevin Buttress, Ian Buttress, Shirley Bekker, Victor Bekker, Kendall Odle, Charmburys, Dave and Kathy Halsor, Gino Talamantes, Kathy Nel, Greg Alvord, Mike Boyd-Clark, Martin Collings, Jesse Ray Vasquez, Denise Kerner, Betty Griffith, Lauren Fidler, Iain Tarbet, Carolyn, Robert and Thomas Diehl.

There were a few who donated directly to the ALS Association and not to me and that is fine and just as much appreciated. It all goes to helping finding a cure for this miserable disease. Jim McDermott, Deborah Russell, Donald Allen and John Thomas Snr. Thank you.

Until next time, stay well, please!

 

 

 

 

November 2nd 2018 Six-month Check-up

I had my six-month check-up with my neurologist, Dr. Lomen-Hoerth today. This was after our Walk to Defeat ALS at Woodward Park, Fresno, last Sunday October 28th (ALSA Golden West Central Valley Chapter).

The news was good for me. I continue to have a slow progression of the disease. If last Sunday was anything to go by, I guess that could be confirmed. I was able to join in on the walk and not only that, but also displayed some crazy dance moves up at the stage together with a number of others much much younger than me! We danced to the music of  “We came here for love”. It was so much fun. Maybe I made a spectacle of myself, but who cares? My philosophy in life is to smile and be happy, whatever besets us. It is what it is.

Just prior to the dancing, I was asked to go up on the stage to chat briefly about the horror of ALS and promote the need to advocate and bring public awareness of ALS. Having been fortunate enough to have traveled to Washington DC for the Advocacy Conference in May this year, I could speak first hand about the importance of attending.

Amyotrophic lateral sclerosis is a mouthful to pronounce, and ALS makes it easier for us to say. But how many really know about it? Other countries may refer to it as motor neuron disease, MND.

I’m reminded of the fact that the hardest thing to lose, is everything; walking, talking, swallowing and breathing. Eventually, it catches up with all of us who are diagnosed with the disease. I’m told that someone either gets diagnosed or dies from the disease every 90 minutes.

My aim is to bring as much attention to the subject as possible, by posting whatever I can on Facebook, and to gain as much financial support as possible to help fund research into a cure one day.

It’s been a really active 2018 for me in that respect.

1. I’m an active member of our local ALS support group in Turlock. We have a meeting once a month to encourage each other and share experiences and information.

2. I attended the ALSA Advocacy Conference in Washington DC in May. I got to be interviewed and got the chance to advocate with many representatives on the hill.

3. Sunday May 20th. I attended the Fresno Kick-off for team captains of the walk to defeat ALS at the Grizzlies Stadium in Fresno.

4. Wednesday, July 11th. I attended a Giants game at ATT Park.

5. Saturday September 1st. I attended a San Jose Giants game at San Jose.

6. Saturday September 22nd. I attended the Napa Valley Ride to defeat ALS. But I only walked and my son Barry accompanied me. I was interviewed on two occasions.

7. Saturday September 29th. I attended the Neuromuscular Conference at Stanford’s Arrillaga Alumni Center, at 326 Galvez Drive, Stanford.

8. Sunday October 28th. I was privileged to head a team of over 30 walkers for KICK BUTT KICK ALS at the Golden West Central Valley Walk at Woodward Park., Fresno. We raised well over $10,000 to reach our goal. What a great day that was, and I can’t thank everyone enough for all the support received.

9. I do my best to visit friends with ALS whenever possible. I think of Eric Eslinger in Santa Clara and Chad Wey in Ceres. Oh , and then there’s Harry Barragan who turned 61 this year and we had a great birthday celebration on that day!

So yes, quite an eventful year! And the fight against ALS continues. My heart goes out to all those suffering from this horrific disease. Please, whoever reads this blog, please become an active advocate and supporter of the ALS Associations all over the world. My personal involvement is with the Golden West Chapter, as I live in Turlock, CA.

 

 

June 21st 2018 One year of ALS.

Today marks the end of my first year of diagnosis of ALS.

It was a little traumatic at first, having been given the diagnosis. But as the months passed, I learned to accept it and move on the best that I can. One good friend of mine, Eric, who was diagnosed seven years ago, has an expression “it is what it is”. He is so upbeat and a great encouragement to me. He has taught me that there is no point in getting depressed about having ALS, because it is what it is. His other expression is “don’t get me wrong”. We still need to find a positive cure for this darn disease – not something that just extends one’s life a few more months (at great expense).

So, I have mentioned how I go to the gym regularly. I was there this morning and decided to make a short video to show you what exercises I do over a 90 minute workout. I’m too embarrassed to show you doing all my exercises but did get a buddy of mine at the gym to film me doing my first exercise of the day – pull-ups! The rest are instructional images of the exercises that I do.

I can’t stress enough (in my own mind) the importance of regular exercise whether one has ALS or not. It can only help. And then there’s the question of diet. We all know about that. I’m beginning to wonder whether I’m being a little bit too careful with mine, as I have lost a couple of pounds since returning from the advocacy conference in Washington DC. I jog half a mile to and from the gym, so I think I’m burning off quite a few calories all round!

Last but not least –  keep the faith. Someone once said “I have faught the good fight, I have finished the race, I have kept the faith”. Well, whatever your religion is, understand that there is a God and we are nothing compared with Him. He gives me strength each day and I refuse to let things get me down.

Enough, until next time! May you all have a wonderful summer.