Trying to be there for my son's future through exercise


3 days in a row - 20 minutes of an LS youtube walking workout, 10 minutes of pilates, 20 minutes of easy Zumba - hey doing better, and another 10 minutes of the Madonna arms. Basically it takes me 2 hours to do 60 minutes of workout in a hotel room.

My friend the former FtF instructor suggested I get paper clips and make a paper clip chain - straight down for days I am successful, across for the days I fall short of 60 minutes. She thinks that I knock it down to zero is a bit much. I really don’t get down when I have to reset - now if it was dieting that would be different. Failing on a diet does make me feel bad, whether it should or not. I promised myself no dieting as long as I did the 60 minutes.

Its funny, no one questioned my motivation years ago when I did this to keep myself healthy to donate a kidney. For me it feels like the same urgency. Many of us worry about needing to outlive our children with scz, for many of our children there isn’t anyone once we are gone.

At least this 60 minute thing is something I can do to help myself live longer and be healthier instead of just sitting around worrying about Jeb outliving me.


Every single day, I worry about what will happen to my son when his father and I are gone. We only have one other child.

I just wish I had a crystal ball.


Its a burden we never put down isn’t it? I know I can’t set it down. That quote I read the other day about there being chains we choose that hold us more firmly than metal ever could, resonated hard for me.

I would want to borrow your crystal ball - I know I have this time right now when things appear to be okay, but,just because I can’t see the shoes dropping, doesn’t mean they have stopped.


All the young parents that were on the forum recently have so much energy to change things now while they have a chance to salvage what they can of their children’s childhoods.

I want to have that sort of energy again - scz just seems to sap us with our adult family members. Maybe this will help, I don’t know.


Yes, but at the same time, those young parents have the heartbreak of this happening to their young children. At least our adult children had a little more time to be healthy-brained and enjoy their childhoods before being hit.

It’s just tragic, no matter who we are.

We do have to stay healthy, for reasons others would never even realize. It’s really good that you started this thread.


I do realize out of sight definitely does not mean out of mind.

It must be so stressful not knowing what’s happening.


I worry about what will happen to my son also. I had him kinda late in life at 38 so I am 61 and he is only 23. I have 3 other children from the same dad and my oldest is 38. I don t have a lot of years left to take care of him. and don’t see any of my other children able to take care of their sz brother. One of my hopes is that his symptoms lessen as he gets into his 40 s and 50 s. What a sad dilemma.


@Day-by-Day It is so hard for me to think about all the people with scz that started when they were children. You are right, most of our adult children had healthy brain time in their childhoods.

Maybe I should have named the thread “trying to be there for my family member’s future through exercise”

At least when he was at home I knew he was safe from someone hurting him right then at that moment. I could tell myself, “no one is hurting him right now”. When he is out in the world I worry about police hurting him.

Its all stress for us isn’t it?

@irene Your age difference is scary, like you I really, really want the symptoms to lessen…


4 days in a row! - if I can get 60 minutes in tomorrow it will be a new record for me in this attempt.

Did find my Mari Winsor pilates are on youtube as well. I love her 20 minute videos where I spend most of the time on the floor. Her pilates do build muscle very quickly. She gets criticized a lot for not moving around fast enough in her videos - suits me just fine;)

I am getting a little better at the Easy Zumba Class - so that is something. Today I did a 20 minutes with Leslie Sansone walking, 20 with Mari Winsor pilates, only 10 with Zumba guy and 10 with Madonna arms.

The hotel furniture has survived.


Did manage to get 60 minutes in to make it 5 days in a row today. My clothes are fitting differently, that’s something.


You go, Hope! Getting into a routine is the hardest thing for me- it sounds like you’ve figured out a way to get it done. I just turned 65 so finally have decent health care (Yay Medicare!) and am looking forward to figuring out what in my body is trauma/stress related and what is just lack of exercise and ignoring my health. Once I get the hypertension and fatigue worked out then I will be able to resume swimming, which I really enjoy and can do almost daily without much hassle. Keep working at it- none of us are perfect and there will be days you don’t meet your 60 minute goal- but clothes fitting differently is a good sign.


Still managing 30 min on cross trainer (uk hottest summer too) no air con here ! It’s tough lol.
Also 25 morning n on smart core .


Maybe I will try a Pilates video. Pilates always sounds intimidating to me.

A couple days ago my son said he wanted he wanted to go in to NYC. This after weeks of doing pretty much nothing outside the house. So we took the train in, went to the Central Park Zoo, and walked back down Fifth Avenue, looking in the fancy stores. We walked almost 5 miles. He had his earbuds in the whole time, which seemed to help.

I was so grateful for that day!!!


Some days are more productive than others. Yesterday I did absolutely nothing. Today I spent 90 minutes at the pool doing water exercises and then later an other 90 minutes walking with my son. It was one of those days when the weather was just right and the pain levels were at a minimum. I am hoping for a repeat tomorrow. fingers crossed :slight_smile:


Yesterday was a slow day for me, too. Today I’m planning to do more (we’ll see!)


Thanks - I was pleasantly surprised to see a sign of progress. I hope you can figure out soon what is trauma and stress and what is the best way to move forward. This is much harder than I thought it would be.


Didn’t have time to update yesterday, but did get in 60 minutes before the grandbaby showed up. This is so much harder on weekends, does anyone else have that problem? You would think there would be more time, but somehow there isn’t.

Am up to 7 in a row, today was like pulling teeth. I didn’t get them done early and had to do them later in the day while sighing A LOT. Brought out the Easy Zumba guy and did 35 until it froze up. 20 minutes of pilates and 10 minutes of fast dog walking.

@Jane57 so sorry about the lack of ac, or am I jealous that you live where it usually isn’t needed? :slight_smile:

@Catherine - you are my current hero - you have been doing this in 2018? I can see why you said its wasn’t easy at first. Prioritizing it is hard, some things have to give way, easy things to do and enjoy, like reading or online browsing.

@Hummingbird - how great you had the wonderful NYC day with your son - what a great day! If you do the Mari Winsor pilates remember when you start out, keep your legs bent instead of stressing out about keeping them straight if its too hard ( my friend’s mom told us that decades ago) - you will still add muscle and they will get stronger. You can straighten them gradually - no rush.

The grandson love the movie Trolls - found a video of Justin Timberlake’s dance steps on youtube - only 4 minutes. That’s how bad it was today, I am looking for 4 minute options to keep me going and came across the old Richard Simmons videos on youtube - I know I laughed at how easy they were decades ago when my mom did them - we shall see who laughs last eh?


You are all cute and I admire your resolve! I have had some successful days on the treadmill last week but didn’t make it yesterday or today. We had plans to meet friends for dinner then I found out they were coming over after dinner so I ended up cleaning house instead of exercising! But I feel happier with the house cleaned up (that is not typically a priority anymore) and we enjoyed time with friends. So in a way, I was taking care of myself, right??? Back to 60 minutes on treadmill tomorrow!!


You go hope4us!! House cleaning when its done feels great, time with friends - gosh that sounds nice!


I forgot to say that we also visited our son! Mostly good, although troubling new aspects of illness. Patience required to let meds work and adjust if needed. I think he’s in the best type of living situation for now. I’ll talk about this later on another more relevant post.