Saturday, 20 August 2016

Ask Me Anything

I said you could Ask Me Anything, and I would answer. Well, today is the day, so here goes.

Before getting into any specific individual answers, there were lots of questions about me and Katherine. I am still hoping that Katherine might once again become a close part of my life. She is a very special woman, a "gem" as my brother says, and I will not say anything here which might get in the way. What I will say is that ALS had nothing to do with our parting. Katherine is far too kind, generous, and honorable to let something as simple as an illness get in her way.

So, as to the rest...

Michelle14 August 2016 at 08:00
Richard...what was your occupation before this horrible disease? Concerning Katherine..why did she leave you? She seemed to love you very much..get back together possibly?can you still eat regular foods without choking?would you consider a peg or in the future be on vent? I read your blog every day and hope for happiness we all deserve and am so sorry you are going through this..not fair..I do care

Before ALS I was a Project Manager and Project Management Trainer/Consultant. My field of specialty is technology. If you ask me to fix your computer, I likely cannot do that. If you ask me to fix 100,000 computers, that I can manage. As to a peg or vent, no to both. I plan on letting nature take its course. If nature gets too nasty, I will help it along.

Denise Jordan14 August 2016 at 12:55
Are you still making wine? Have you ever considered a communal living situation? Why did you and Katherine guys seemed so good for each other? From where do you draw your strength? You are my hero!

Yes, I am still making wine, and loving it. The two major challenges I have these days is the cost of it all, and the heavy lifting. Thanks to support from friends and family, the heavy lifting and the bottling is pretty much looked after. Thanks to donations to the blog and from others, I can still afford the wine making kits and supplies. As to my strength, I draw it from those around me, the friends and family who make my life worth living. They are the reason I keep going, that and my curiousity about what will happen tomorrow.

Eva14 August 2016 at 16:15
Have you considered that now might be the time to move into a home. I know it's not the same situation at all, by my elderly inlaws left moving into a nursing home until there really was no other choice and consequently that event happened with much less of their input and control than they would have wished for. Little things
like choosing how to dispose of their belongings ( there is only so much you can bring) were left to the kids to deal with. Also the more care you require when you move in the less you are able to take part in the community aspects of nursing home living. 
Lastly I don't know about Alberta but the sooner you get yourself on the waiting lists here the more choice you have in what the eventual placement will be, and trust me not all homes are created equal. 

I will never move into a home. I will die in my apartment, in my home. If that means making a difficult choice at some point, I will make it. Of course, as will all things related to this disease, it is possible this line in the sand will move. I'll let you know if it does.

Fred Nurke14 August 2016 at 16:46
How do magnets work?

The north pole of one magnet attracts the south pole of a second magnet, while the north pole of one magnet repels the other magnet's north pole. So we have the common saying: like poles repel, unlike poles attract. A magnet creates an invisible area of magnetism all around it called a magnetic field. Enough? Or shall I get into atomic alignment?

MrMat14 August 2016 at 21:39
Is the amount of sleeping you do "typical" for those with ALS? Does it vary from person to person as well as stage of the disease?

I have not real good measure on what amount of sleep is "typical" for people with ALS. I know we need more sleep than most, and that exhaustion is a very common part of the disease. I also know that as the disease progresses, most of us need increasing amounts of rest. But if you think about it, the harder it becomes for us to do so many things, the more exhausted we become in doing them. Even more, remember that my brain is still working hard to get those muscles moving, even though they don't respond, so there is exhaustion there too.

In your opinion, which is better for those with a slowly progressing disease? Canada or the United States? Why?

For almost any medical situation, my vote will almost always go to Canada. This is particularly true for a debilitating and progressive disease. I believe our health care and social care systems a superior to those of the US. General health outcomes, childhood mortality, and survival rates from disease all support my view.

If you could have 3 wishes, what would they be (and you can't wish for unlimited wishes).

1. A cure for ALS
2. A cure for Alzheimer's.
3. Enough money to help myself and others who have lost everything to this disease get back to where they were before they got sick, and then a bit more for their other losses.

Let's assume ALS was 100% cured tomorrow. What superability would you prefer? To be like Superman? Or telepathy (mind control)? Or another ability? And WHY? :-)

I want no superpowers at all. None. "With great power comes great responsibility." Voltaire/Ben Parker. I just want to be a regular person, a normal guy.

How long do you think it will be before you are done driving?

I'm not really sure about this, given the nature of progression for me, but I suspect this is my last year of driving. I don't see myself renewing my insurance next February.

Is there a particular milestone you have in your mind where you think it will no longer be "worth the effort?" If so, what is that milestone?

There used to be, but then I learned how hard it is to do the deed. I like what my friend Mike says. "One morning, Richard, you will wake up and just decide you've had enough." However losing the ability to eat or breathe might be pretty tough to get past.

If you could time travel, where & when are the top three places you would visit?

1. 1770's - At sea with Captain James Cook and later with Captain George Vancouver
2. 65 Million Years ago - anywhere on the planet where I could see the dinosaurs
3. Tomorrow - always tomorrow, just one step ahead of death.

If you could send back a note or bit of advice to yourself when you were very first diagnosed, what would that note say?

It looks pretty grim right now, but there are still plenty of good things to come. And you're going to live a lot longer than that 36 month prognosis, so take it easy with your money.

Are you watching the Olympics?

No. Not all that interested.

jo15 August 2016 at 05:40
How do you handle day to day things now without help? What do you do when you fall without anyone around?

My arms are still reasonably functional, although increasingly weaker. So I do much of my "normal" stuff as usual. There are things, like sweeping the floor or cleaning the bathroom which I cannot do. These I leave to home care. I make use of my PWC lift function to get up to things high in the cupboards. I use my grabby stick to pick up things I drop. I use the various slings and lifts in my apartment to move my body around as needed. I ALWAYS keep a sling powered up with the controls near the floor so that when I fall, I can slide over to a sling and pick myself up. Either that, or I call 911. Both have happened.

Patty15 August 2016 at 16:43
Curious how you are getting along without Katherine? Was it an amicable parting? I know from your blog, she helped you in many ways. You mentioned she also helped financially. Will you get along okay without the financial help? 
Also curious about long term care in Canada. Here in the states it is very very costly to go into an assisted living facility or hire "in house" help ($20-30/hour; $150-$200 for 24 hour help). I actually felt quiet sad when I read your post about you and Katherine.

Yes, Katherine helped me a great deal, but I will be fine without that financial help. That's not what I want, or wanted, from Katherine. Now I am being forced to turn to family more, and I am looking for some sort of work that I can do from home which is not too stressful. I don't know a lot about the long term care situation here in Canada, although I know that subsidized cases, like I would be, take about 2/3 of your income, leaving the rest to you. As to in house care, my home care is completely funded, so I have no idea with respect to costs.

Mary Toki16 August 2016 at 06:41
Hi richard. You mentioned that your als has not progressed in the last 12 months and that you have remained fairly stable. You also mentioned you think slow progression could be because you are carrying extra weight. Do you also think there is any link in alcohol consumtion slowing the progress of als being that it is a cns depressant? Strange question i know, but ive read you like to drink and thought perhaps there could be something to it..

My ALS has progressed, slowly. I have no idea how alcohol consumption affects progression, but wouldn't it be ironic and wonderful if excessive drinking slowed the progression of ALS. I would so laugh out loud at that. I just drink because I like it; not every day, sometimes too much in a day.

jo16 August 2016 at 11:55
How is your speech effected with ALS? My friend has PLS and as affected his swallowing and speech.

Most people think my speech is not affected by ALS, but I can tell that there are some changes. I have trouble now and again with word formation, plus my tongue gets in the way at times. What's more I tend to bite my inner lip and tongue on the left side, and that just plain hurts. Oh, and I tend to run out of breath after a long sentence or in the middle of a paragraph of speaking.

Betty Marxen16 August 2016 at 13:28
Hi Richard, I really appreciate this blog you share with us. It has helped me to understand some things the doctors don't answer. I am curious about several things, in your earlier writings you seemed to want to be in your manual chair more than your power chair - I would think it would be easier in your power chair. what are the pros and cons? You also talk about your plans to end your life. Right now my husband is refusing a feeding tube. I think there could be a chance of quality of life with it, and he doesn't have to use it but at least it could be an option that he might keep hydrated... have you made a decision on those issues? thanks... 

When my arms were stronger, I preferred my manual chair; more agility, more freedom, easier to access. As I have weakened in my arms, the power chair just makes more sense. But I can't use my PWC when I want to go out in my truck, at least not without someone to load it in the back for me.

Let your husband make his own decision, and support him in that decision. This is a tough enough illness without fighting over it with someone you love. Some find quality of life with intervention, others come to despise it. I will not use a feeding tube, or a vent. I want nature to take it's course. I suspect that is how he feels too.

Elizabeth Feltham16 August 2016 at 18:44
Do you use antidepressants?  Yes, for depression and for FTD
Would you consider mechanical intubation, or stop at BIPAP, or neither?  No. When I'm done, I'm done.
Why did you and your wife divorce? Irreconcilable differences. Too many to mention.
Is there ANY chance you and Katherine can reconcile? Yes
Is there any decent seafood to be had in Calgary? Perhaps in one or two places, but not many and none which I would care to recommend.
Do you own a cowboy hat? No
Have you tried any alternate therapies like hypnotherapy? No. I do what my medical team says. They are trained, experienced, and fully up to date with the current research.
Have you tried following the Lunasin Duke protocol, or the Deanna Protocol? No. My medical team has not recommended it.
Have you been to Drumheller? Yes, several times. Love it.
What is your favourite cut of beef? Cow. Oh, wait. Prime Rib or a really thick Rib Steak.
Boxers, briefs, or commando? Boxers unless commando is called for.

Tara17 August 2016 at 17:40
I'd like to know more about your children.

I intentionally don't say much about my children in this blog, out of respect for their privacy. I will ask them what they think about me saying more about them. It's up to them.

TNA17 August 2016 at 20:06
Where r u going for your next vacation?

I doubt there will be another "major" vacation. I'm out of money. In terms of short trips, I hope to get down to Vancouver to see my Mom and Ray, along with my children and grandchildren. That might happen later this summer, or perhaps this fall. I'm also headed to a friends wedding in Saskatoon in October, assuming I can get the money together.

TNA17 August 2016 at 20:08
You have 4 brothers, but you only write about 3. What about the 4th one?

My youngest brother and I do not talk much. I have only spoken with him once or twice since my diagnosis. Nor do we see each other much, only once since diagnosis.

TNA17 August 2016 at 20:10
Keep on blogging... Do other members of your fam write as well? Would love to hear what they have to say about living with or having a family member with als.

My daughter Meaghan is an excellent writing. She has a food blog she updates periodically. The others have creative talents in different directions. I will ask them if they might be willing to write something for the blog now and again. It's up to them.

jo19 August 2016 at 23:28
Do you any medical facility in your area that is knowledgeable on ALS? Are you at all religious ?

I am tremendously fortunate to live in Calgary, AB, one of Canada's leading centers for neurological research and one of Canada's leading centers for the treatment of ALS, such as it is. As to religion, I am not religious, but I do believe in God, just not the way most people do. Click to this post and might help you understand.

TNA20 August 2016 at 00:59
As your
condition progresses, is you family closer to you? Has your ex-wife called you concerned about your health?

My ex-wife has not spoken to me since I was diagnosed, nor have I attempted to speak to her. My family, especially my daughter Kate, has grown much closer to me of late. I am grateful for her and my other children, for my brothers, for my Mom and Ray. My friends have grown closer too.

TNA20 August 2016 at 01:04
Have you paid off your truck?  

I worked out a deal with Ford and I now own my truck. I am grateful to Ford Canada for all their help with this. My truck is my lifeline.

Michelle20 August 2016 at 05:52
You have traveled quite a bit.....what is the one place you have visited that is a must see for everyone to vacation ? Mine was the grand canyon. And what would you say is your biggest regret and what would you have changed in your life if anything? Next question is personal....would you consider wearing an adult diaper?

To have a "must see" for everyone assumes everyone is interested in the same things I am interested in. There are amazing places on this planet, like the Grand Canyon, or the coast of BC, or the sands of the Arab desert. There are wonderful buildings, like the London Natural History Museum or the Duomo in Milan. But my favourite place of all was on the back of my sailboat, in the Broughton Archipelago, fishing for salmon. Regrets? I've had a few, but then again too few to mention. I regret returning to a bad marriage for another decade of unhappiness. I would change that if I could. But very little else. I've had a pretty good life, all things considered.

TNA20 August 2016 at 13:17
Sounds like you like to cook. Can you share some of your fave dishes/baked goodies? Who taught you these skills?

I love to cook. I like baking too, but not as much. My favourite dishes? I love to grill up a good steak, or pan fry some chicken. I make a mean Seafood Risotto and Caprese Salad. Lasagna always stands up well in my kitchen. I roast a fine turkey, and lamb too. Plus I love to make Lamb Shank in my slow cooker. As to who taught, my Mom will admit it was not her. I mostly taught myself.

Greg Fusco20 August 2016 at 13:50
If someone wanted to send you somethings in the mail. What address should they use?

Suite 309B - 3719 49th St., Calgary, AB  T3A 2E3
No religious materials please. No treatment or cure suggestions please. No solicitations please.

TNA20 August 2016 at 13:56
Do you ever say "why me?'? Do you ever 
blame something that may have happened to you in the past that "caused" you to have als?

I often ask, "Why me?" But then I remind myself of how pointless that question is. Nobody knows the answer, and even if we did, it won't make any difference. I don't bother looking for things in my past which might have caused ALS either. My life is like so many others that if we look at what happened to me, then the whole world should have ALS.


  1. Thank you for always sharing. I have asked a few doctors about alcohol and slower progression - alas they all say the alcohol just likely makes me happier and more relaxed but does not directly affect progression. I disagree and will continue to consume red wine at least once a week. ❤️

  2. Thank you for the answers, and for the classy way you dealt with all the Katharine questions. I'm disappointed you don't have a cowboy hat, but the rest of the answers were to my satisfaction ;)

  3. My husband consumed 1-2 fairly strong cocktails every night as long as he was able to swallow. His ALS progressed very rapidly - I lost him 15 months after he was diagnosed. Matter of fact, it was 2 years ago today. So, I don't feel consumption of alcohol has any effect on this horrible disease.