Special Note
On Saturday, August 20th, 2016, I would like to do an "Ask Me Anything" blog post. On that day I will respond to any questions asked, regardless of how personal or inane. No matter what you ask, I will answer it as best I can, as honestly as I can. It can be about ALS. It can be about writing. It can be about my personal life. It can be about my career. You can ask me anything.
To pose a question, simply make a comment on this post. This will stay at the top of my blog until August 20th.
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
ReplyDeleteAre you still making wine? Have you ever considered a communal living situation? Why did you and Katherine split.....you guys seemed so good for each other? From where do you draw your strength? You are my hero!
ReplyDeleteHave 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
ReplyDeletelike 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.
How do magnets work?
ReplyDeleteWithout placing blame, why did you and Katherine break up?
ReplyDeleteIs 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?
ReplyDeleteIn your opinion, which is better for those with a slowly progressing disease? Canada or the United States? Why?
ReplyDeleteHow do you handle day to day things now without help? What do you do when you fall without anyone around?
ReplyDeleteFred... You crack me up...
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteCurious 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?
ReplyDeleteAlso 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.
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..
ReplyDeleteHi 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..
ReplyDeleteHow is your speech effected with ALS? My friend has PLS and as affected his swallowing and speech.
ReplyDeleteHi 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...
ReplyDeleteDo you use antidepressants?
ReplyDeleteWould you consider mechanical intubation, or stop at BIPAP, or neither?
Why did you and your wife divorce?
Is there ANY chance you and Katherine can reconcile?
Is there any decent seafood to be had in Calgary?
Do you own a cowboy hat?
Have you tried any alternate therapies like hypnotherapy?
Have you tried following the Lunasin Duke protocol, or the Deanna Protocol?
Have you been to Drumheller?
What is your favourite cut of beef?
Boxers, briefs, or commando?
I'd like to know more about your children.
ReplyDeleteWhere r u going for your next vacation?
ReplyDeleteYou have 4 brothers, but you only write about 3. What about the 4th one?
ReplyDeleteKeep 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.
ReplyDeleteSorry to hear about Katherine. But why did she go out with you in the first place since you really couldn't do much and seemed to get worse each day with no cure in site but an end in site? She was a real "gem". Poor Katherine, how she had to clean up after you. How gross. By the way, how old is Katherine?
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteWhat did Katherine get you for your birthday? What did you get her for her birthday?
ReplyDeleteWow TNA, I sure hope you are a good friend of Richards because your comment about how gross it was for Katherine to clean up after him was heartless and mean. You would be surprised the things you do for LOVE! Helping someone who can't help themselves is a good thing. I hope you are never in a similar position...
ReplyDeleteNeeded to add..TNA. Cleaning up after someone you love, well it may be hard, often and time consuming not to mention would put a strain
ReplyDeleteon the best of any relationships. Gross is not the word I'd use. My partner has PLS. And while it hasn't come to his needing major help yet, if anything breaks us up it will not be from me fed up with helping and caring for him.
TNA-Also felt it necessary to note that I don't think Katherine was ever forced to clean up after Richard. I don't think he is in any position to force anyone to do anything physical that they don't want to do... I'm sorry but TNA's comment struck a hot cord with me!
ReplyDeleteLove your posts. I was just diagnosed with ALS. How long ago were you diagnosed?
ReplyDeleteOops I saw your post telling how long you have known you had ALS..
DeleteIf you could have 3 wishes, what would they be (and you can't wish for unlimited wishes).
ReplyDeleteLet's assume ALS was 100% cured tomorrow. What superability would you prefer? To be like Superman? Or telepathy (mind control)?
ReplyDeleteOr another ability? And WHY? :-)
DeleteHow long do you think it will be before you are done driving?
ReplyDeleteIs 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?
ReplyDeleteIf you could time travel, where & when are the top three places you would visit?
ReplyDeleteIf you could send back a note or bit of advice to yourself when you were very first diagnosed, what would that note say?
ReplyDeleteAre you watching the Olympics?
ReplyDeleteDo you any medical facility in your area that is knowledgeable on ALS? Are you at all religious ?
ReplyDeleteAs your
ReplyDeletecondition progresses, is you family closer to you? Has your ex-wife called you concerned about your health?
Have you paid off your truck?
ReplyDeleteYou 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?
ReplyDeleteSounds like you like to cook. Can you share some of your fave dishes/baked goodies? Who taught you these skills?
ReplyDeleteIf someone wanted to send you somethings in the mail. What address should they use?
ReplyDeleteRichard, really want to thank you for your blog ..
ReplyDeleteIt takes a certain amount of courage to write about something so scary. And you add just enough humor so your readers don't feel like it's a pity party. I'm looking forward to reading many, many, and much more from you.
My father has ALS. Your symptoms and case are pretty much identical. I get a better understanding of how he is feeling and thinking from reading your blogs. Thank you for the continued insight.
ReplyDeleteDo you ever say "why me?'? Do you ever
ReplyDeleteblame something that may have happened to you in the past that "caused" you to have als?
Thank you so much for taking the time and using your energy to write your blog. My husband has ALS and is following about the same timelines and physical progression that you are and we find it very helpful to have so many challenges and issues verified through your experience. We try to research treatments available through clinical trials and breakthroughs around the world. First - don't ever give up hope. Researchers and medical teams are working day and night to find viable treatments to end or halt this disease. Secondly and this is my question - are there any clinical trials in Alberta or Canada that you could qualify for. My personal feeling is that stem cells are going to be the answer. But who knows I could be wrong. All best and thank you. From London, Ontario and The Villages, Florida. ��
ReplyDeleteMy husband Neal has ALS diagnosed. 2014, having difficulties with bathroom configuration , has comfort height toilet and potty chair over it , also a reach extender so he doesn't lose balance while cleaning, what kind of set up do you have , what suggestion do you have, any input appreciated
ReplyDelete