The Diagnosis is Not the End!!
Five years ago I was diagnosed with Early Onset Alzheimer's. When I was honest about having the disease on my sites all but one of the supporting companies ran for the hills taking nearly all of my income with them.
There is no cure for Alzheime's but my neurologist stresses working my brain and is now fully supportive of my flying RC airplanes because of the intense concentration required and how that "exercises" my brain to delay the progression of the disease. To date she feels this is doing as much or more than anything else we can come up with.
My goal with this effort is two fold. One is to continue pressing my brain with the intensive concentration required by RC flying. But I also want to show others with this and other similar diseases that the diagnosis is not the end! I can best do this through my sites flyingrc.net and fightingmyalz.com where I can demonstrate that we can work against these diseases ourselves without compromising medical therapy's.
I am not able to work in a traditional job anymore, in part because I drive very little. However, I have the computer horsepower to build and maintain my sites at home. If I can generate enough money through this campaign to make all this possible I firmly believe that we can help other people and make their life and that of their caregivers a little better.
Please know that I deeply appreciate whatever donation you can make, however often you can. I know we all have our limits but a little from a lot of people is just as good a bunch from one person in the overall scheme of things.
Thank you for considering my efforts!
Posted – 5-3-2018
At about 5:30am today (May 3, 2018) I officially turned 69, an age not many around me thought likely or even possible. I had an uncle that continually told me to act my age. I knew it aggravated him to no end when I didn’t so to this day, long after he passed, I refuse to act my age. Just in case….. And, my Internet presence has drawn the ire of some who wish I had not reached another birthday and while I appreciate their thinking of me, here I am anyway.
It’s been just over a year since I had my cancer surgery. A few weeks ago, I had the last of the quarterly scans that look for reoccurrences of the cancer. The report continues my “remission” status and the oncologist says we can go to two scans per-year for a while and if no cancer is found we eventually will go to annual scans until something else ends me. The last year has not been fun but I am still here so it could have been worse.
Since the surgery a couple of odd things have changed about me. For most of my life I have not been able to eat virtually anything that swims short of the breaded fish sticks that I could smother with tartar sauce that I did like. Now, I can eat fish, still using tartar sauce, which should be a good thing. I still love a good steak when I can afford it but have gone out specifically for fish without feeling like I was going to hurl. If nothing else, eating fish quashes one admonishment from my primary doctor.
Also, over the last 45-or-so years I have had regular dreams (nightmares?) where I relive several machinegun incidents from my time in Vietnam. Just the thought of me zooming around the sky in a helicopter, with a machinegun, seems like something out of a movie but was all-too-real for lots of guys in my age group. Those dreams had always been historically correct in that I won the short but frantic gunfights enabling me to be here writing this, or anything else. In recent weeks those same dreams now feature me losing the gunfights. Just what that means, I don’t know or perhaps don’t want to know as I can’t imagine the “true meaning” (if there is such a thing in dreams/nightmares) being good. Besides, accepting some spiritual meaning of the gunfight dreams sounds very grown up which we have already established I ain’t doing.
Since it looks like I am going to be here for a while I decided to expand my Internet presence with a new site, yesmensew.com. I know that is a sharp divergence, but I saw an opportunity so jumped in as much as finances allow. It appears to be working as the positive email and responses to the related videos have been getting more numerous and generally positive. I suspect some of my more devout naysayers have followed me to the new site, but it simply would not be the Internet if they didn’t.
The idea of a sewing-related site came about while I searched for a sewing machine with which to make wing bags and other “protectors” for my RC planes. When I saw the types of sewing-related reviews and content already on the Internet I saw an opportunity for my style of content generation.
I have always had a knack for presenting information that people can use in their own shop. That makes this kind of work enjoyable for me, most of the time. If nothing else, I have been prolific in my Internet efforts. On YouTube I currently (5-3-2018) have 564 videos (woodworking, RC flying and sewing) with an astounding (to me) 29,051 subscribers and a slightly scary 23,162,102 total views (to date) of my videos.
All of this tells me to the not growing up regime and to get back to work – lots of people are waiting. Stay tuned. As I get the cash flow moving there will be new content on both the RC and sewing sites. My advancing age means I’m not as fast at climbing stairs or getting content posted but I am working at it (right now it is 1:37am) and will continue all this as long as possible.
For me being here I mean
Text by Tom Hintz
Posted – 12-11-2017
All the recent news related to sexual misconduct towards women got me thinking about my last year and all that has happened to me. At every turn during this life altering experience women played a major, if not the primary role. I must admit that the sheer numbers of women involved didn’t surprise me. Thinking back over this period I was more surprised at how few men were in the mix.
I should preface this by saying that my Mother demonstrated how important women were in life and that they were to be respected, always. To this day I “mam” women automatically, and frequently think of my Mother when I do.
My personal doctor is a woman who though small in stature is a force to be dealt with when need be. She is the one who asked if I was having trouble swallowing during a routine visit. She refused to let me minimize the yes answer and started ordering the tests that quickly found the cancerous tumor in my esophagus where it met stomach. I would find out later that the cancer was already stage 3 but if we had waited a few months it may well have spread to where there would be no cures. She and the doctors she sent me to quite literally saved my life.
Getting ready for those tests involved a bunch of women medical equipment operators along with the male doctors. When I went into chemo and radiation treatments it was virtually all women administering the chemo and with rare exception it was women running the huge machine that focused the radiation beam on my tumor, literally shooting that beam around other organs to minimize the detrimental effects to them. These were the same women who had put “targets” on me to make sure I was positioned perfectly when the radiation started shooting.
When I reported for the surgery last April 4th, 2017 it was nearly all women getting me ready to go into the operating room. My memory of that day literally ends with the nurses giving me the medications to get me ready for what was coming.
After the operation there were who-knows-how-many women keeping track of my condition as I began recovery from an operation that was way bigger and longer than I anticipated. Along the way I was given a drug to help me sleep but had what I can only describe as a psychotic reaction during which I jerked out my own NG tube, reached around and pulled the epidural out and tried to leave the room altogether. It was women that kept me there, made sure I hadn’t hurt myself and later refused the need for my apologies for how I had acted during that episode.
Through all of this there was my wife, Beth who remained rock steady through all of the bad news coming from the doctors telling me I had cancer. She got her job worked out so she could take me to the daily radiation treatments and weekly day-long chemo treatments.
When I woke up after the surgery she was sitting there knitting, waiting on me to come around. When I was only “sort of” coming around she made sure the nurses understood what I was trying to say, and I expect what I should have been trying to say now and then.
It as my wife that pushed my breathing issues after getting out of the hospital that led to tests that showed I was loaded with blood clots that put me back in the hospital for a couple more days. I would have probably tried to tough it out, only making things way worse.
It was my wife who did everything she could to make recovering at home easier. And I suspect she had to hold her tongue when I got out of line. Together we are exploring my new configuration, the nearly no stomach and all of the changes that brings to our life together. I am eating very differently, getting sick when I try to eat too much while we are trying to stem the uncontrolled weight loss, now over 100lbs since the April 4th surgery.
All this means that the current flood of stories about men behaving badly just makes me think about all of the women out there that are getting worse than they deserve. I can only hope that I will never lose enough of my mind to disrespect the women around me. I would be in very serious trouble without them as would the men that haven’t figured that out and try to prey on women. What is embarrassing for me is not having any trouble believing the stories of abuse and inexcusable behavior by so many men.
I think of all this as Christmas approaches and my wife and I having just celebrated 38 years of marriage. Christmas is different these days for us. We try to make sure our daughter in Boston gets things for Christmas but tell each other we don’t really need anything. Being empty-nesters hasn’t brought a financial boom to our life, but we are thankful for the huge insurance premiums the wife has been paying at her job that quite literally saved our financial butts when I needed a major operation and everything that goes along with that.
I hope all of you have a great holiday season. Over the last couple of years lots of you have helped make all this a bit easier to deal with. It is always uplifting to know the are people out there thinking good thoughts.
Its hard for me to get my mind around what all has happened in less than a year. I was diagnosed with the cancer around last Christmas, and began chemo and radiation soon after. After 5 weeks of chemo and radiation I was wiped out as the doctors expected and took a few months to get my body back up to where the surgeon thought I could withstand what he was going to do to me. The operation happened on April 4th, 2017 followed by 8 days in the hospital of which I recall maybe 5 or 6.
The day after I was release from the hospital I talked my wife into driving me out to the flying field “just to watch”. I was having trouble breathing but thought that was because of the huge holes they had made where my stomach once lived and across just under my right shoulder. Having survived that initial jaunt outside I decided to drive myself out to the field to watch the next day. I was having even more trouble breathing and there were repeated questions about my needing a ride home. I drove myself home out of pure stubbornness but knew almost immediately that was not smart. I did make it though. A couple days later I was back in the hospital, loaded with clots. That earned me another two days in the hospital while they thinned my blood down.
I left the hospital with a prescription for blood thinners that I had to take for 6 months which ends at the end of this last bottle. That part of the journey is hopefully over for good. However, the say if I develop another clot I get to take blood thinners for ever and ever which would not seem like a long-term deal all things considered.
Now I face the holiday season starting with Thanksgiving, with a wife that excels at cooking but lacks a throttle on how much she makes. My lack of stomach capacity and what appears to be a digestive tract stuck on “kill” add up to no fun at all if I eat a little too much. Let’s keep this sort of civil and just say that what happens then is not pretty, nor fun and certainly precludes going out of the house.
Part of my plan going forward is to start another site, yesmensew.com that gives me a content range that I can do in the house, particularly over the winter months because my 110-lb weight loss means that my Wisconsin-level resistance to cold is all gone. I can start shivering in the house if I don’t have a coat on.
Anyway, the good news is that I am still here and working towards the future as I can. I have projects under way for both FlyingRC.net and yesmensew.com so you can drop by those to keep track of me. I obviously ain’t going anywhere!
I know, it’s been a while since the last update but I have been busy getting a little better and a lot smaller.
Since I was diagnosed with cancer I have lost a bit over 100 lbs and that seems to be continuing though recently at a slower rate. The surgery that removed the cancer also removed a bunch of my stomach and esophagus which makes getting enough calories in me and stay in me to gain weight tough. But, I knew going in that there were no guarantees that the surgery would make everything hunky-dory and that has apparently come to pass. I’m still here but this new path through life has lots of bumps and some scary pot holes now and then. Through all this I am trying to keep building my web sites to keep my mind working and to generate income to some degree.
Recently I have begun work on a new web site that looks at of all things, men and sewing. I’ll wait for the chuckles to calm down. The inspiration for this new site came from my seeing so many guys making wing bags for RC planes, usually from Mylar/bubble insulation. It works to some degree but I started thinking about using actual fabrics to make these bags and how much better they would be for the finishes given the softness and no-mar properties of readily-available fabrics.
That got the idea going and since then I have come up with a bunch of ideas that tell me to go after this new web site as I can come up with the cash to cover doing it, even at a reduced pace if need be. The other benefit of this sewing-based site is that I can do it when weather keeps me from RC flying. Despite being from Wisconsin and having laughed at my neighbors and friends about their inability to withstand even minor cold spells, losing over 100lbs means that I now have little resistance to the cold. That means more days inside where I can work on content for both sites.
During all this I feel like the whole chemo/radiation/surgery ordeal over the last several months has done something good to my brain. I feel less forgetful, am able to maintain a conversation more easily and do not feel on the verge of getting lost when I drive. I am also remembering how to get to places that I had forgotten about a year ago. I honestly don’t know what all that means but I feel encouraged and that makes me want to double down on the site work to preserve whatever “brain benefit” has come my way over the last year.
So, that’s the update for now. I am working on everything as hard as I can with the resources available. As soon as I get the new sewing-related site framed up I will post that url here and you can get the full-on chuckles out then.
Stay tuned and thanks for your thoughts and contributions since all this started. Both are greatly appreciated.
Your new project sounds interesting. Is useing cloth a unique idea? Seems like it would fill a niche need. Nice to see you keeping that unique mind working overtime! If your idea is a new one can you patent it? As the saying goes......GO PACKERS!!
My mother died of this horrible disease about ten years ago and it runs in the family. In my research I have found plenty of data about battling this internally besides working the brain. In short eliminating all chemicals in food i,e, use organic only ... grass fed beef, milk, cheese etc., free range chickens and pork and eggs, real organic olive oil and coconut oil and lots of greens and fruits all organic! I hope this can help you as I don't have cash to donate so good luck and I enjoy your site very much thank you roger
You are blessed more than most. I have occasionally tuned in over the years and seen. I couldn't afford a fraction of what you have in your shop or fly. Don't get depressed. I have known this illness as well as my own a very long time, and yes most do run for the hills when they find out. $25g's is chicken feed my friend. As typical memory ward care is $6g's a month. I had to give up flying long ago as my friends were not. I was a Vietnam era vet with a problem. Cherish what you have, a good attitude, as it is gratitude. I do.