I'm glad you feel better after your shorter workout! And I'm happy to share. Although it's hard to tell with PCS if anything you do is really the best thing or any decisions are the right ones. I still wonder at times if I should just have just locked her in a closet for a year.

She fought through lots of ankle injuries so overcoming that "tough it out" mindset was really a big issue.

YES...she stops when she feels the slightest symptoms. Well...she is supposed to. I don't know for sure if she ever tries to tough it out. After a few regressions, such as you experienced a few days ago, I sort of doubt she tries to tough it out.

She does yoga in a class once a week and at home on her own maybe once a week. She is on the eliptical or running outside 20 minutes at a time probably 5 days a week. The running outside was a big deal. I wasn't sure if she would be sensitive to the jarring as lots of people are. I made her do a few really short runs before a 20-minute one. She does some 5 lb weight work once in awhile.

I'm sorry you guys are going through this with little ones to care for. I hope you have someone out there helping you figure out which doctors to see, what treatments to explore, etc. Hang in there...

Hey Kelly-

Going off what PCSlearner had to say- 10 minutes to start was way to much! I actually did the same thing at the end of January of this year, not aware of this subsymptom threshold program designed by Dr. Leddy. I had a pretty bad relapse of symptoms because I kept biking even though some of my symptoms were getting worse.

The idea is to ALWAYS stay beneath your threshold. I started doing 5 minutes on the bike at an extremely slow pace. I stayed at 5 minutes for a week and steadily increased the pace each day. I didn't have an exacerbation of symptoms so I've continued to increase the time by 30 second intervals and am now up to 9 minutes at a level 2 pace on the bike. Which is NOTHING compared to the exercise I was accustomed to, but hey, atleast it's some progress!

You would be a perfect candidate for the program- people come from all over the world! I'm really excited for my appointment in a couple of weeks and will be posting on how it goes.

Erica

You are right, any progress at this point is something to be happy about!! I've decided to take a week or so off to make sure I've fully recovered from my over exertion and then start with a couple minutes of exercise and hopefully improve from there. I was thinking about trying a yoga class as well. Flexibility has always been something I have never really focused on, so I figured this might be a good time to try and improve in that aspect!

I actually heard back from Dr. Leddy today regarding the concussion study. He said he also lives in Canada and wants to get in touch with me to discuss things. I'm really interested to hear what his thoughts are and what he may be able to arrange.

Hope all is well, talk to you soon!

Good plan. Go really slow with the yoga, especially if you are new to it. Your balance may not be what it was pre-injury. Just be careful of balance and don't do any moves that make you uncomfortable with your head below your heart.

Luckily my daughter was able to get into a beginning yoga class at our community college, so they were all starting out slow. I dont think she would have handled the more advanced stuff she is doing now very well if she hadn't had a few months to learn and adjust.

Best of luck!

I can't wait to hear about the U of B program!!!!

Hello everyone!

I got the chance to speak with Dr. Willer (one of the researchers at the University of Buffalo who works with Dr. Leddy) last night. Things are looking really good for me going down to Buffalo to take part in the study! If all goes well, I will be able to go down in a few weeks for testing. I will definitely post my experiences for those who are interested.

He was explaining how they believe people who have been suffering from PCS for more than six weeks aren't still experiencing their various symptoms because of the actual concussion, but rather because they have been de-conditioned from no exertion. It is really interesting stuff, and I'm very excited to be a part of it!

He also said I will need to get a heart rate monitor for when I exercise. Does anyone have any advice on these? What I should look for, where to buy them, how much a basic one costs, etc? Thanks!

Kelly

I don't know about heart rate only but Walgreens sells a wrist model for pulse and blood pressure for use when exercising. It is only $30.00.

Heart Rate monitors start around $40 and go up in price depending on features. Usually there is a chest strap and a watch. Polar makes great monitors. The basic units will give you a read out of your heart rate while the fancier ones will let you set your target heart rate range, warm up/cool down periods etc. Some even download to your computer. I'd ask the clinic what features they want and/or if they have any recommendations.

Kelly 4 - the problem I have with the deconditioned theory is that many do try to get back to their pre-injury activities and are unable. The question is why, why can't those that try, work out?

I can't get pass a 1/4 mile of slow running. If I pick up the pace my body seems to go in a shutdown mode.

When I go to the gym the only thing I can do that does not cause me problems is arm curls. For the first time since my accident I tried using the slant board for situps. MISTAKE. I could actually hear all the blood rushing to my head and got very nausea. I am still trying to recover.

Anyways the thought that some are just deconditioned is probably true for some but there are still some that try, and try again but can't get pass the headaches, nausea to go forward.

Hmmm...Would this mean that someone who is not typically physically active would not develop PCS? So there are no pre-injury couch potatos out there with PCS?

And what would the time factor be? 3 weeks post-injury? Would that be long enough to become de-conditioned?

If this is the case then the usual recommendations of complete rest would be totally wrong.

On some levels it makes a lot of sense: blood vessels "forget" how to move blood around as effectively; fewer endorphins mean worse moods. But on other levels I'm not convinced: people who try to "power through" seem to have more symptoms.

Perhaps this is more true for people who don't have any other issues (i.e. hormones, optic nerves, vestibular, nutritional deficiencies, etc).

I'm certainly not a doctor and I really have no idea. Just some ramblings here...I am so excited to hear back from you guys after you visit U of B. I'm particularly excited to hear what kind of testing they do to make sure there aren't any other issues going on and what they have to say about susceptibility to future injury.

Thanks for sharing!

StuckinBoston:

You bring up some good points. I don't even think the researchers can explain these differences that each individual experiences, but that is one of the things they are working towards. However I know that everyone that has taken part in this study has seen great improvement in their symptoms, most of them becoming symptom-free. That seems pretty promising to me.

How long have you been stuck running at 1/4 mile? From what I've read, it seems that you need to start out really small and get your body used to being active again before you try and increase your activity. I have no idea how long it takes before you can improve, but like everything else, would probably vary from person to person.

PCSLearner:

Hmm, that is an interesting point - if they believe symptoms are related to de-conditioning, why does PCS still effect athletic individuals as well as nonathletic individuals? The initial study involved 12 individuals - 6 athletes and 6 non-athletes. They had been symptomatic at rest for 6 weeks or more, and then after participating in this study they all became symptom-free. It did note that the athletes were able to improve faster then non-athletes, although they are not sure why this is the case.

Those that were involved in the study needed to be at least 6 weeks post-injury. When I was talking to Dr. Willer on the phone, he said that the first three weeks after sustaining a concussion were extremely important, and that no physical/mental exertion was critical to recovery. After that, if there was no recovery in that time frame, they thought it was unlikely for a "spontaneous recovery" to occur.

If you would like (or anyone else that is interested), feel free to PM me and I can email you a copy of the study that was sent to me. It is a bit "scientific", especially if you are not familiar with that type of information, however you would still be able to understand the basic concepts of the study. Let me know, I would be happy to send it to you!

Kelly