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
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 really relate to what you are saying Jacob's mom! I constantly question myself about whether I am giving my child too much responsibility or not enough. It is a tough line. I am not sure if there is a right answer since every kid handles things differently at different stages in their lives. I do think that parents today worry much more than parents of a generation or two ago. I blame the media, as I don't think our parents put much thought about somebody wanting to hurt their kids; it just wasn't on their radar. With this heightened sense of danger, it is hard not to worry about our kids (and even more so about our kids with D).
It sounds like you are paying attention to your son's personality and making decisions based on what he is ready for. This sounds to me like a great way to handle it!
thanks aimee! lets chat soon, off for vaca tomorrow, hope you are well. amy
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!
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 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
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
What an inspiring post. Now I'm definitely going to read Phil's book!
I am a mother of type 1 child and it is so nice to read your comment. I give you kudos for encouraging Phil to follow his dream. I feel so grateful that my daughter was diagnosed in an era when we have the tools to better care for her. I am also very grateful to people like you that have encouraged their kids even when the doctors did not agree; we have learned so much of what is possible from those that have struggled with diabetes before us. You are very inspirational and a great reminder to not allow diabetes to win. Thanks for sharing!
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.