Nothing on a serious note, but I would like to know what your doctors have recommended about exercise.  My wife loves to swim, but it is possible that it could not be in her best interest to expose here head to different levels of pressure.  Anything you all have learned over the years from jogging, weights, aerobics, jump rope, hopscotch, etc.  My wife (neurologist says he can only think of treating here like stroke victims, but is unsure, because she is in perfect health and the lack of information about MM) wants to join a gym, but we do not want to join and become obligated under contract if she is very limited in what she can do.  Those gyms are like the mafia when it comes to getting out of a contract.

Thanks

Wayne
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Hi Wayne,

Dr. Steinberg is my 17 year old daughter's neurosurgeon.  She had her surgeries in early June, and has just recently been released for all activities . . . including water polo!  (Have you ever seen water polo???)  The one restriction placed on her has been to not play in the goalie position.  We are amazed . . . frankly I don't know if I'll be able to watch, but she is so happy to be "back in her game".  Anyway, she is doing some running for conditioning and swims between 1 and 2 miles almost every day.  So far, so good.  

Each person is different, though.  If unsure, maybe  your wife's doctor could check confer with another doctor.  Anyway, good luck to both you and your wife!

Jill

Hi Wayne.

Before Cara's first surgery...I expressed concern that any heavy exercise would bring on a "spell" or "TIA"...I asked her pediatric neurosurgeon repeatly over a 3 year period (at that time they "thought she might have MM" but not sure "yet")...he said "let her be"...you cannot keep a child still.  So watching her I am amazed because...if she feels weak...she stops and rests anyway...I make sure everyone knows she needs to be hydrated all the time (most important thing)...and just enjoy the exercise, sport or whatever as much as your body can take it but "stop" if something doesn't feel right.   I even read somewhere that a simple sneeze, cough can set off a "spell", too.   Not a bad idea to print out "what is MoyaMoya fact sheet"...ask the club you want to join, or explain to them your wife's condition and see what they say.  Because I got a break for something that was really for the "hearing"...(lot of listening devices)  I asked how am I going to benefit if I am deaf can't hear but still want to do it.   Maybe they have a limited membership...temporarily...until you know the further outcome of the MM impact on your wife..we never know...but exercise is ALWAYS a positive thing if done properly anyway.   Like on poster, I think it's Lisa who is a regular runner and her doctor said her running did help her (in fact probably saved her life).  I think swimming would be AWESOME exercise and treadmill - fast walking would be great...as long as not bobbing the head.  The weights (not to heavy though) would be great too...especially for women in later years...strengthen the bones.  She would have a lot of use for a club membership...I have seen people in wheelchairs get the most out of it, too.

Tight Hugs,  CarasMOM.  

Hi Wayne,

Before my surgeries, I couldn't really do much, exercise wise, because any type of overbreathing (including laughing too much, crying, sneezing, sniffing too much when I had a bad cold, coughing too much and even hiccupping (sp?) and obviously exercise,) would bring on an episode. Missing PE at school was no big deal to me but missing out on my swimming was. However, now that I've had my surgeries I can now go back to my swimming - am currently relearning - haven't managed a length yet but I'm determined to get there! I also played some badminton when I was still at school and had tennis lessons, when I was at uni. I guess it all depends on the individual on how much or little you can do. As it has been mentioned before, you have to listen to your body and stop when your body tells you to... and as I've learnt from the site, keep hydrated. My doctors haven't told me to avoid anything in specific but I will stay away from anything that may involve my head being knocked - just have to watch out for rogue tennis balls! I'm not sure what the position is on exercise with your wife awaiting her second lot of surgery - perhaps a MM specialist will be best to advise you both - which I guess is why you've posted this thread, with many here having MM specialists :) Hope you find your answers.

Best Wishes

Roselyn

Thank you all for your advice.  Jill, water polo!!!!!!!!!  Wow.  My wife could not handle that sport without MM.   That is certainly good news and she is happy to hear that swimming is a possibility (doctors order first). You make good points also CarasMOM and Roselyn. I will tell my wife to watch those signs and let her enjoy life.  But now I can push my Neurologist to pursue this info.  Don’t get me wrong He is a good doctor and teaches neurology at UCLA, but he is not a Neurosurgeon, which are the people with the most MM experience.  It is hard to get time with Neurosurgeons, because they are always so busy.  

Thanks so much

Wayne

I'm very untypical case and to be honest I'm even suspecting the diagnoses (3 years ago) of having MM on my right side. MCA is almost completely blocked. I'm on aspirin, no surgeries done or planned 'cause I'm pretty much symptom-free (prone to one sided headaches and sudden sharp pain in the blocked area, have had migraine and 3 TIA's of 20-30 minutes).

At 40, I ran my first marathon this summer at roughly 3 hoyrs 40 mins. I run 20-40 miles weekly, and compared to the desperation after the diagnoses, I'm a compeletely different person with lust to life again.

But as I said, MM may have stopped in my case or is proceeding extremely slowly, and by  excersising I'm trying to keep the blood pressure low, blood lipids at good levels and all this general background for good health.

jv