Ok not sure if i should share this here, but I bought his book for me and then maybe my son to read for inspiration. 1/2 way through,obviously Phil is a stand up guy and god bless him for living his dreams but i just got past another seizure he had in the book and all i can think is i am so glad my son is super conservative and not all that competitive. how could his mom ever rest! I think Phil is a member here and like i said i am going to finish his book and so glad for all he has done but living to that edge.... although i can see he cares for his diabetes right now i just feel scared and grateful that my son is not like Phil in regards to his competitiveness! just needed to share, maybe my leisure reading shoud not be diabetes related and more escapism or my typical self help stuff!! amy
yes, he is a member here. his book was mentioned in this discussion
https://forum.tudiabetes.org/topics/a-book-for-my-teen
and I know our admin Lorraine knows him pretty well
I loved his book. He writes about T1D as I remember it growing up (is there such thing as D-nostalgia?). I think it’s a great book for any T1, a great lesson of how you can be an athlete despite having T1, not exactly a lesson many of us heard growing up. Regarding his seizures, though, I don’t think they had anything to do with his being super competitive. Many of us T1s had seizures back in the day. The insulins we used then were not as predictable and NPH had a peaking effect that was especially hard to deal with in kids. Seizures can still happen, but I think the better insulins and frequent testing and pumps make them less likely overall.
Every Type 1 is different. Your experience and mine will never have the same track.
I do not read books like this. I have too much to deal with daily, and agree that some good escapism is healthy for us, or me at least.
I absolutely love that book. I agree there are a couple of scary moments. I still want Caleb to read it though. In fact, I'm going to go send him to get it off my night stand now that he has some summer reading time! Caleb is a tender soul, and I know that he will be saddened by some of the story. But there is so much to learn from Phil. He is such an amazing person. I have learned a great deal from him - from how to stay positive to little tips for managing bgs while active.
There is SO much more information available to athletes today. If not for the pioneering efforts of Phil and those like him, doctors would be telling people with diabetes all the things they cannot do. Well, the unfortunate reality is that there are still doctors with this mindset, but less so because of athletes like Phil and Kris Freeman and Cliff Scherb and Teams Type 1 and 2 at large!
It is because of Phil and others and their experiences that people with diabetes CAN compete and do so intelligently and safely. It doesn't always go exactly as planned, but I think the risks are much less than they used to be because of what has been learned from others' experiences.
Personally, I'll take competition over just goofing around over the summer any day. When Caleb is competing (not that it's at Phil's level, but what's appropriate for a 9 year old), I feel like I can plan and prepare and compensate better than when he just decides to bike and swim and play wiffle ball for hours on end. Those days are accountable for any gray hairs I have. ;)
The "Steel Magnolias" scene may be required by the books publisher association or something :-)
The scene may be scary to a parent of a T1 or someone who takes care of a T1 but... we survive and do fine nevertheless.
I havent read the book, but I'm very interested in doing so from the description I'm seeing here. From a long timer, nearly 30 years now, I personally LOVE the fact there is a Type 1 diabetic out there who is telling the world you know what we can do just about ANYTHING we want. I agree older insulins like NPH and R, were a NIGHTMARE to deal with, my worst episodes of low blood sugar have been on those older insulins. And that's NOT being a competitive athelete, thats just going about doing my everyday normal activities. Yes lows can still happen, but they to me are much easier to treat, and not as severe today as they were in the days of the past.
That's a good point. I'm about Phil's age and when we were growing up, T1s were actually discouraged from seriously competing in athletics. Many of us were only able to compete because we had parents who were determined to keep us involved and active. I know for me this mindset paid off because I am still very active and healthy.
i have read more into the book, there is no doubt phil is a hero. i had just read through the parts where he was off riding and riding as a teen and as a parent i just cant help it i am just now comfortable with jacob running a few times around the block never mind riding on trails all day. obviously a different era, when i grew up it would be like go out and play see you tonight, these days kids stay closer to their parents those without D not just with. i'm not sure what is better. i just know my son does not really have the skills to care for himself safely in that situation, nor does he really want to hence, why i said i was glad he was more academically focused as opposed to constantly physically on the go. he is training for xcounty and i think he has what it takes. just reading the story made me feel fearful as well as inspired and in awe of all phil has accomplished. as years go by i will feel like i can trust my son to handle his D in any situation and do anything he wants. not for nothing but even phil without all of todays tools would probably admit he was somewhat flying by the seat of his pants back in the day. i just wonder what jacob's reaction to the book would be, i guess i will let him see for himself and we can talk about it! Again i have only respect for phil and his accomplishments. amy
Out of curiosity how old is Jacob? I mean the reason I ask, this is something Jacob will have to live with forever, and he will be the one to have to manage this, make decisions, and learn what to do to trobuleshoot stubborn high's, safely treat lows, so you don't swing high. I've just aways felt the best thing for me as a child growing up was my parents MAKING me take responsiblity for my illness and learning what to do and how to do it. I was 10 when diagnosed, and literally a week later I was doing my own shots, my own blood glucose testing. It kinda concerns me today, with all the improved means of management, kids arent being taught to be more proactive with their management. Im not saying this to criticize, it's just a trend I seem to notice.
Hi christy, jacob will be 14 next week and diag at 10 like you. he is involved with his care and i probably should hand over more responsibility. my theory is he has the rest of his life to deal with it, and he does struggle sometimes emotionally and with being different, he is reserved by nature... so if i can help him not sweat all the details now so that he can enjoy being a kid well i'm going to do it. obviously he has tested his own wings at times and is very knowledgeable and has all the skills, i just dont feel ready to say here to go just yet. this should be a big growth year for him this year starting high school and i think he is ready. sometimes i feel like it may be harder being a parent of a type 1 child than having type 1 yourself. i would certainly take it over it i could for him. but for now i will help as long as i can and try not to hover, worry and hand of the ropes when we are both ready! again i think it might go along with the difference in generations, go out and play as opposed to setting up play dates and watching for every little bump! i have never been that much of a hovering parent but type 1 certainly keeps me on my toes! amy
I will agree it certainly is a different world. I have a 17 year old son, and while he's not diabetic but there are just a LOT of things I did at his age, lol and yes with and without the parents knowledge, that I would just shutter thinking about him doing now. It was a different time. I mean I remeber being in 5th and 6th grade we rode our bikes ALL OVER the small town I grew up in. But we moved from a small town to a much larger area, and I mean this is all my son knows, lol he doesn't know small town life at all. And I laugh thinking about it cause Im like I was younger than my son and I'd walk for blocks all over town, but I'm fussing at my kid cause he wants to walk a few block to McDonalds with his friends, LOL I didnt have to cross busy streets with about 3 lanes of traffic and red light runners in both directions.
But it's just interesting the trends I've noticed regarding kids and D today. I guess sometimes what we didnt know then we couldnt really stress. We didnt have access to CGM, LOL heck my meter was a pretty new thing. I imagine today, with better management tools, also comes more increase in knowledge too, more knowledge of what can go wrong. I think a lot of us older diabetics. Management was kinda a fly by the seat of your pants kinda thing. Best of luck to both you and Jacob.
thanks christy! it is nice to chat about things and be heard! my nonD friends just dont understand. i agree with increased tools does come increase knowledge and potential worry! i have never wanted jacob to have a CGM because of that, maybe someday he could benefit from it but for now he is fairly stable and certainly does not want that constant reminder of his D or his CGM beeping off in math class! he checks so often we catch him when he is going high and feels his lows so far so good, best wishes and thanks for sharing! amy and by the way i was riding my bike all over town at that age too! so different!
I am Phil's mother. I was conservative with his care when he was young. There were no tools like today and as others said, the insulin was much different. There was no long term research about the effect of intense exercise for Type 1 diabetes. Most people were (including us) told not to exercise. It was obvious to me even by the time he was two years old that moving reduced the need for insulin. We exercised every day. Team Type 1 has now embarked on a research program so Type 1's can be high end athletes, just like everyone else.
Phil was a natural athlete. To not allow him to compete in the myriad of sports he participated in would have allowed the disease, Type 1, to win. There are a lot of processes internally that go on in our bodies outside of diabetes involving glucose and energy consumption. I was his "CGM." Of course, for that to happen, was a lot of effort for me, as the parent. But I chose to work with him so he could compete. That meant getting up frequently during each night to test him. Working with coaches, having food for entire teams so he would not be "different."
The effects of intense exercise sometimes did not present for three to four days after the event. Then he would go low. When I asked his doctor, he said "Eat more." I said he cannot. He said "Well it is the Glucose Transport Protein." When I asked what that was he said, "Look it up on the web." That was 17 years ago and I had to do research using command line code
Phil has never been hospitalized from diabetes except upon diagnosis. We had some flu/ER scares but that is it. His worst seizure was at a diabetes camp where they took his personal control away from him and tried to manage his diabetes themselves. He was 14 and by that time understood his personal control. This happened because a "doctor" again, did not listen to what I said, as his mother nor did she listen to him. I threatened litigation because I was so mad. His only other under "my watch" was during puberty in a huge growth spurt.
The moral of that story is that your child MUST be captain of their diabetes. After that he learned to stand up for himself and if something was wrong ask for help And we (and now him) were never afraid to let the world know we were dealing with a dangerous disease and showered everyone around with glucose tablets.
Part of being athletic is the potential for going low. Should I have stopped him from a dream because I was scared of a disease? No. There are consequences to everything. I had and then he had to learn how to manage. And as we all know - it is a lot more effort than our "normal" friends.
Thanks for posting and for raising such an inspirational guy for us to "share"!
I didn't start doing sports until I was like 37, having moved to be very sedentary in the interim. Maybe it's a midlife crisis or something but it's been very good for me. I think that as long as you are prepared to test and treat, you can do sports without much more risk of passing out than you (or I...we?) face sitting on the couch eating potato chips. That risk is always there. I will add that, perhaps other than the expense, cycling is a great activity as I've found it easier to lug snacks and meters along with a bicycle!
thanks for posting! obviously phil is amazing and so are you. we and our children are our best advocates with this disease as you mention. i am an exercise physiologist and well aware of the benefits of exercise and advocate for jacob to be active. that being said i am a cautious type B without must competitiveness in me and even before jacob was diabetic i have been happy that he seems to be like me in that regard. we are all different, but truely blessed to have wonderful children with the ability to cope and exel. best wishes, amy
I am a firm believer in "Just Do It. I was in a closet sobbing stuffing potato chips in my mouth thinking my son had an incurable disease. BOO HOO - as my hand went 1/2 up to my mouth with another clump of chips, I stopped eating like "that" ands started exercising that day -- as I knew he was prone at 8 months to heart disease, blindness, stroke.... blab blah. It was my big A-Hah moment as all that heart disease and fat information was coming out around then. So Type 1 was bad for Phil, good for me as I got my "physical" act together. Mentally - tougher.
I have to agree with a lot of what the others here have said. I was diagnosed at age 9 back in Nov 88' and things have come a long way. I was always the captain of the diabetes ship starting from the day my doctor said I could eat again.
I spent 3 days in intensive care hooked to an IV drip of insulin and saline. On that third day the doctor came in to talk to my folks and I. 10am maybe? The discussion went something like this: Ed would you like to eat a real lunch? I was chomping at the bit; all I had were waters and diet sodas to put into my mouth for the last 3 days.
They let me fill out a diabetic menu card and they took it down to nutrition. The food came promptly at 11:30am and was held hostage at the nurses station.
The doctor came in after that and said remember our discussion about insulin shots? Which I recalled the details of how to inject the insulin into an orange for her. She showed me where on my body I could inject the syringe again. Then she reached in her lab coat and pulled out a 30 unit 1/4cc syringe pre-mixed with R and NPH; and placed it on the table that the food trays usually go on. She said you have to give yourself this shot first; once you do hit the nurse button and the food will be in shortly. If you cheat and squirt the syringe out we all will know. She then turned to my parents and said for them to follow her to the hall way; she asked them to leave me in the room alone with the syringe and they could check in but to leave me to make my own decision and take the injection on my own.
Looking back there was only one way out of this situation and I really did not have a decision; but I stared at that syringe for 30 minutes. I finally took the shot close to 12 noon; pushed the call switch expecting food. Instead I was the butt of another cruel diabetic joke; apparently I had to wait 30 *more* minutes for the injection to kick in...
For the record that was the most delicious hospital food I had ever eaten (it was ice cold they offered to microwave it; but I was too impatient). But I am glad that my doctor did that; at the time I really thought she was being a hard @.. But as I look back on my life; I am glad she did it that way; made me own up to my actions and take responsibility I grew up a lot in that one week.
These are reasons I say good old days? I think the term good is only relative to where you are standing.
Good luck with your son.
Ed
Hah - the good old days - I started by wringing out diapers and sticking the stick in the cup. That must have been accurate (-:
i hear you on the mentally tougher side, but that is where tu comes in everyone here can relate, listen, inspire.... it has been a big help to me. joanna i just finished reading phils book and all i can say is you should be very proud of your boy, and i have felt privilidged to chat with you here. jacob for now is more toward the introverted side but someday i hope he can make a difference as well! all the best. amy