Kite#7

Hello All, Try to work everyday!! However some are better than others and all days roll into the next. My wife and I run a Personal Training / Yoga Studio - Oh & a household of 5 kids runs us. We have cut back back dramaticly over the past couple of years , but I continue to train some wonderful clients that inspire me as much asI help them. Gone are the days of 5am to 10pm with a cadre of different classes and variety of small seminars. We are in the process of closing up the studio and moving to a new home by hte Ocean in BC were I have already been offered a position to continue to train , as well as perhaps teach a bit , so if the Body co-operates and the wallet holds out I will continue to Work. As far as drug regimen I continue to take 400 mg Topamax , 40 mg dilaudid , 10 mg Paxil , 4000mg Evening Prime Rose Oil , 1000 mg BORAGE oil , 10 g Creatine , 1000 g N - Acetyl Cycsteine , 5 ml buffered vit C , 1000 mg Magnesium , 500 mg Calcium , 500 mg Milk Thistle. Like all of you I hate this regimen , but it keeps me going. Sometimes BARELY , and i wish deeply that I never have to ingest another pill again. My kids though don't particularly care if their Dad is in the Studio , Driving the Car , Training , teaching , -- just that he is not convulsing on the floor , or stuck motionless , pain sticken in bed or a chair unable to speak. Drugs be ******. Same with Dysautonomia POTS ,OPCA MSA. My will for now is not yet on paper its in this "DISORGANISED" body and contempletive mind. My work now is clear - 5 KIDS 1 WIFE this Dad. IF My Body is my familiy's weakiest link than My family is going to be OKEY DOKEY and I'm still WORKIN' SORRY FOR THE RANT SLAINTE' Kite 7

Jesse, Creatine does have expire dates especially if not stored right , so Iwould check before using it. It generally has half life kinda thing but you want "bang for buck" and good stuff should be on the pricey side really ( ie EAS , Lean Body , MetRX etc.). I would suggest trying a smoothie as way of taking it ; tends to help with the crystally taste. Add fruit like berries and you won't notice , or you can but pre - mixed Creatine drink powders in different flavours - more palatable and easier to mix than the straight mono hydrate ,as well , thry tend to have added supplementation such as Magnesium , Calcium , vit C etc. which is what you should look for. kite 7

Hi ariella, Where exactly is the pain when you say mid-back ? Because often with spinal problems cervical issues can cause refferential pain in the thoracic area. I have had 3 cervical discs removed , all are damaged and I am plated between C3-C7. As well , i have damaged discs lumbar , however the referential pain caused by the cervical issues was , for lack of better phrasiology DEAFENING ; it plain hurt and turned to several other things also. The coughing blood though that is something I certainly didn't experience - keep on it. good luck Kite 7

Hello all, movies at my house are #1 past time with 5 kids we are the local video stores best / re-phrase highest volume (more ways than one) customer:: 1) Apocolyse Now 2) Braveheart 3) Iron Giant 4) anything CLINT EASTWOOD / DISNEY ( I know interesting juxtopostions - i got 5 kids - say Oxy "MORON" 5) Any Monty Python 6) Wrestling Ernest Hemmingway 7) Boondock Saints 8) Casablanca 9) Anything Robin Williams / Wil Ferrell 10) All Arnold All the Time 4 TV 'S still don't get to watch what I want Kite 7

Generally , yes the weight is water ; but not in the traditional sense as it lays in the muscle tissue rather than sub-dermal. You will notice an increase in lean muscle with any type of "resistance" program. Light is a relative term as it is more a consitencey thing that you should concern yourself with. Do what you can. Change your regimen / exercises up adding cardio. The more variety the more likely you aare to stick with , to hit different muscle groups and to realise the benefit of Creatine use. I always suggest to my Clients to begin Home use with a Swiss Ball (big blue stability ball , make sure to get the right size for YOU) some dumbells and soft Medicine balls (ie Danskin 4, 6, 8 lb). with this you can develop a nice little regimen of CORE exercises ( the most important) resistance , Cardio and not even being aware of it motor unit function ( another Creatine benefit). Remeber exercise comes in many packages - gardening , walking a dog , Craftwork , be creative and you will find that the ingestion of th right supplementation will benefit. AS far as amount ; this depends on size and work , but generally 5 grams after workout. For people in this position I don't recomend any of the "loading ' or cycling . Loading is done so to allow enough creatine to lie in the muscle then not waste in an effecien amount of time. Cycling - it was thought this would help to maintain the effectiveness of creatine over the long term aswell prevent any Kidney damage over long term use due to the crsytaline structure of creatine. I feel confident , and most academic research supports, that likelyhod of Kidney damage to healthy kidneys is minimal and cycling is a preference. For Dysautonomia it is a benefit to retain fluid ; even beter if it can improve energy in the bioenergetic system. Only adendum watch fluid intake re:vitamin wash and suplement with a diet frought with live foods ie veg friuts , omega fats, and a good multi et al. Hope that helps GOOD TRAINING Kite 7

Hello All, I have used Creatine for several years in a variety of regimens , However for dysautonomias my belief is that it is a benefit. The science behind Creatine is pretty strong. Basically you will retain water at the muscle thus , giving you more mass plus fluid retention. Creatine phoshate helps both with energy production and recovery. Having the extra stores in your body Basically allows for more efficient production of glycogen our bodies fuel , when we exercise or are under strenuous activity. You have to be aware that the fluid retention with creatine can lead to dehydration because the fluid does lie in and around the muscle tissue until being used in the ATP-CP reaction so you must increase your fluid intake. Here in lies anther problem -- vitamin wash - meaning that by taking in enough fluid to make the creatine effective you may wash some or most of the RDA of the essetial vitamins and minerals out of your system , thus it is important to eat right , supplement right , and buy a legit Creatine with little waste - preferabley added Magnesium and Calcium. Creatine is in our diet. We require it. It can be a very usful supplement but be sure to read up on it. Use it under direction of a certified trainer /nutritonist. It will do wonders if you are exercising - even just starting out. As for the nausea with it , you can mask by adding to smoothies or buy prepared powders. If it works for you the expense then becomes negligble. Happy training Kite 7

Hello ALL, I find drivingto be difficult now and would agree with all posts. It is one of the most dis heartening things for me as cars have been a hobby for me for years. I especially find driving standard for any length of time a complete sensory overload !! The upside , and kinda bit of a turning point , when I was at complete wits end and My GP asked me about surrendering my drivers liscence and received a resounding agreement. It re-engized him to look deeper into all diseases. Thats how important cars &driving are to me. My fab GP trusted me and my wife though and after My 2nd visit to the Mayo , He did not take my priveledges away. I expected aletter each day for months thinking that was it ; but He has left it to our own judgement. I don't drive often and when I sense a problem pull off right away to wait it out , however long. Usually I do not travel alone. I still enjoy vehicles - just bought a new one Friday(from your pic jacobyd youd like it) - and I don't mind being chauffered around by my lovely Wife . However , the "ODD" time Mario Andretti or for you Canadians Jaques / Gilles Villeneuve likes to raise the HR & BP if only figuritively. Start your engines Kite 7

Laura , Gatorade, and all similar sports drinks are superb pre exercise "meals" in fact as your body does not have to work as hard to digest as they are liquid thus , preventing , vasodilation / digestion during workout. I would suggest just plain water though during exercise as a thirst quencher. I f you are dry during exercise you are in the latter stages of de-hydration - it is important to make sure that prior to physical activity that you Hydrate. I think that the misconception is that we have to drink to do this. NO ; it can be done thru diet as well. Think about fruits yougurt , veggies -foods high in water content , also tea( preferbly green or roi bos) even coffee. THE thing most important about hydration though is that as you increase be aware of vitamin wash so eat properly - live foods not processed. Another very important aspect is daily fat -good fats- intake THE OMEGAS , when exercising. This will help ,basically, to burn and utilize energy at the cellular level more efficiently. Prime rose is an all round good one as well as FLAX. You can even ad to the gatorade or a yogurt fruit smoothie -ah very refreshing after WORKING OUT- HELPS THE GUT TOO Merrill !!!! ( in more ways than 1 trust me ) . Anyway , starting a program is what is important not the equipment or the level -- just the doing. Your going to have down days , hours anyway but exercise puts more time on the clock in the end and helps to realise how efficient a system the Human Body is. Gives you a little bit of hands on /awarness in treatment. Slainte` ( good health in Irish) Kite 7

Merrill, yes, in fact the recumbent will strengthen your "gut". Two ways . Proper form while riding the bike , this means setting yourself up so that your hips are square in the set -equal on each side - ; because we all have a stronger side of our body and the tendency is to lean ,especially when fatigued. secondly, watch your BREATHING you will intially go thru an excersise response - basicaly your body equalising O2 levels from stores in the body to needs due to activity - for the first 2 -3 mins so breathing will be more laboured - FOR EVERYONE no matter the fitness level. It is important to keep your upper body stable - no rocking to and fro - and relaxed . BEcause you are in a recumbent position you are pushin out with your legs so you are working ABS , OBLIQUES, HIP FLEXORS as wellas LEGS , BUTT burning calories thru out the body . REMEBER to be hydrated keep core tight and upper body relaxed and breathing easy. Kite 7

Laura, Presently , in Ontario but have purchased a home near Victoria BC and Me , my Wife & our 5 uber kids are moving in July. Better weather , newer home , nicer pace of life - OCEAN . My Doc here works in conjunction with my Doc at the Mayo. Basically , it is keeping abreast of change in symptoms and drug regimen. Really not much as far as treatment in the general sense, other than providing for lifestyle. I work very hard with my training program to address a pro-active (hate that phrase) treatment to my condition. I believe that training muscle , motor units , nerve response & cardio specifically helps put time back on the clock. My GP is very supportive and has studied hard at understanding my condition and its possible manifestations ; again the Mayo too is unbelievable an E-ticket - this is a major ride scary roller coster. My trips there they tested me upside down sideways backwards inside out AND again. It is extraordinary in the capacity to be thorough and humane at the same time. THE mayo for me , was and will continue to be by the looks of it, money well spent. Slainte` Kite 7

Hello Rose, For ME the Cleveland clinic is closer however , the Mayo seemed to be theonly option. I am from Canada and was to pay for the services my self so I wanted to be sure. My GP ( who is the most fantastic family doc in the world) had successes in the past with other patients at the Mayo and believed with my "WIERD" goings on that it would be my only hope. He turned out to be right . it took 2 visits , 2weeks /time , spanning over 6months .Then they wanted to keep another 2weeks for further tests for further determination. But as the pocket book goes and the prognosis stays virtually the same my Wife and I decided it was time just to come home 'til it gets worse ( oxymoron). Plus we had people trying to take care of our 5 kids - talk about needing medical attention (haha). Anyway , that is why the Mayo for me . It is the world's Best. My Main Dr there is FANTASTIC. incredible communication, they didn't sugar coat anything and strove to find everything plus as turns more. I highly recommend The MAYO - its an E-ticket though cheers kite 7

Hello all, Just reading the posts here and though I've not seen the thread on exercise I would suspect that its because of the increase in lean muscle mass and bone density. it would also make sense that one should have more energy due more efficient use of bioenergetic systems and O2 absorption. Cheers kite 7 Ps laura ,what part of Canada?

Hello all, In my Personal Training studio I use Tectrix recumbent bike , Concept 2 rower , and Precor 523 Elliptical trainer ( no handles but incline/ decline). All these pieces are top of the line light gym/home use and are somewhat expensive , however , it makes a difference. The design is more anatomically /ergonomically effective -hence a better and safer (all around ) workout. You can buy these pieces re-furbished and they do hold their value. It is a good investment. I personally shift my cardio workouts between the elliptical and rower as opposed to the bike. Mianly , do to the fact that both offer CORE as well as cardio conditioning. You can also create a more efective all around workout with each machine ; however they require some techneque. the rower is probably the most cost effective of all pieces and does a full body cardio plus resitance - it is hard work. The elliptical is tremendous - myfavourite - effective ,with incline /decline, and you can create many programs. The only thing is to watch heart rate- I have tumbled off - in fact the recumbent too . As far as heart rate monitors - it pays to get a good one rather than the hand grips. With all this don't forget to eat well. Its important to do it and stay focused ,in stride and invest in your future. see ya training Kite 7

Exercise, a convertible on a beautiful sunny day THAT I CAN DRIVE!!!... for more please see long winded diatribe in vitamins /minerals as i'm runnin' ouuta steam for today. Happy EAster Kite#7

I have ataxia thru right side of my neck & jaw with weakness on left most days but no swelling. i've also had 3 vertebrae fused so given your plight I would certainly 2nd tearoses advise and get an MRI. Cheers Kite #7

A well managed exercise program , as simple as walking then some resitance training. Be sure to get some help setting it up and remember a little will go along way. Core training is the best way to start and requires little or no equipment. But, i would recomend a Swiss / stability (big blue ) ball & some hand weights / medicine balls (light) . Seek out an ACE certified or equal trainer tohelp organise an at home regimen . This should help to increase energy as always only do what you can ; need be, break a routine up into 2 -3 parts. I am a Trainer , own my own Studio and have trained / rehabed many but this has been the most consistently difficult to train. As I have gone from my usual programs , the adjustments that I have had to make have led me to be a much more diligent Trainer to all my clients ( even when i have to train froma chair and can barely speak). It is important to stay active keep cardio ,muscles , bone strong`and nerves firing. The liittle bit of exercise provides that air of accomplishment ; help yourself to get better, stay heathy and have more energy -- even if it is just for a momment. Bottom line is small well balanced meals with a modicum of proper focused exercise and well researched supplementation can provide some relief and give you extra energy. If I have learned 1 thing in all of this you have to reach in before you can reach out because nobody, DOC'S included ,can provide the answers Sorry for the little bit of a rant but its been March break rolled into easter here so ALL 5 KIDS all day for last 2 weeks -- great fun ;But you wannna talk energy Man if I could only tap into them. Best wishes Happy Easter Kite #7

hello all, One way to maintaina balance is by looking at the glycemic level of a particular food this will tell you how it will affect your blood sugar levels. The best way of course is to eat small meals balanced diet with portions of complex carbs , protien and fats. If you find yourself eating sugary food one way to lower its impact is to eat a protien source with it. this lowers its glycemic level. And do not forget the fibres both soluble and insoluble. Basically though the glycemic index is a good start. Slainte` ( good health -Irish) Kite #7

Hello all, Both times I was at the Mayo I stayed at the Kahler Grand and found it to be a really neat character place to stay as well as having wonderful proximity benefits. They do have clinic rates but I don't believe that they have kitchenetes , however , there is a Starbucks in the Lobby. It is just across the street from the Clinic which was wonderful as iwas able to rest in between testing and it has easy access thru the tunnel system to all the wonderful restaurants in the immediate area ie. Micheals. There is a wonderful coffee shop called Caribou coffee in the tunnel system were the people are extraordinary both with service and understanding , just a joy on those "DAYS" ( tell them Tony from Canada says Hi!! ). I did two 2 week stints there and was happy with the hotel , the service, its location , and after my Mayo BILL ,even the price. I hope all goes well for you when there try to enjoy as Rochester is a pleasant city with wonderful restaurants ( I actually gained weight first timein 3 yrs ) . The city has several hotel choices but you won't go wrong with the Kahler Grand in my book. Slainte` (good health in Irish) Kite#7 (aka Tony from Canada)

Ginger, My wife and I were looking thru the net last nite and while taking a break ; she had to drive the kids (5) to the video store friday nite ritual here, I did a purusal of the forum and saw your thread. Wow It was almost my experience to a "T". I went to the Mayo twice last year. Each time for 2 week stints. Both times included testing that was forien to me and long some painful - oh and "PURPLE" . It wasboth the most inspiring place to be and the most fearsome. I felt like finally after years I would get answers. The staff is well -- incredible its like taking your car into a formula 1 garage for maitaince. My 2 visits were about 6 months apart and the degree to which my symptoms had progressed Dysautonomia was diagnosed right away 2nd visit . they wanted to keep me 2-3 weeks longer . but We were unable at that point as our kids were starting school and the costs of the testing were ringing up. We felt to that we basically had as much info , from an imperical standpoint that one needed. WE keep in touch with our "home" Doctor at the Mayo with regard to any change in drug regimen or complications. It is and he is the best on earth PERIOD. Ginger your are right to say that it gives you more than a modicum of perspective being there. I would suggest being in Rochester itself as it is a wonderful town/city. Lastly Ginger thanks for your candor putting your experience online like that I'm sure that it reacquaints many of us with our own victories. See ya CHEERS Kite#7

I have been taking Topamax for about 2 yrs and it has helped me with a number of things with minimal side effects. I take it AM and PM on an even 12 hour split. This I have found works absoulely the best for me. As for the intial weight loss this should act as a reminder to **** your nutrition and meal plans ;its a good time to take advantade of the schedule the benefits and the reminder that small meals need to be affective meals inorder to benifit the body as well as the meds. Stay strong and hope the Topamax works for you Kite#7

Hello All, it is good to see that chat has turned to action. remember - small meals are the way to go but they to must be complete ie. carbs , proteins & fats. it is important for people in our position to maintain energy levels and to avoid gastric problems post meal - try to eat complex carbs - its like throwing hard wood on a fire- It will burn longer and not raise blood sugar levels basically. Its more important ,for this reason , to watch the glycemic index when making food choices. With exercise begin with CORE strengtning this will help to BALANCE your whole body . Inturn allowing you to work on smaller stabilising muscles while working the larger muscle groups. Swiss Balls ( the big blue stability balls) and some small medicine balls are a great start for begining and to supplement advanced programs. What you want to do is lose body fat by increasing LEANMUSCLE mass . this will help in several ways First it will increase metabilism which should help to maintain weight . Secondly it should help to increase blood flow and Oxygen exchage. third it should help it creating a generally more efficient bodily system were your organs can work to there full potential. Don't forget that it is ok to break up an execise program into several sessions and that it is the intensity during not the time spent. while losing the FAT weight you should be putting on muscle weight SO it is body composition and function that we strive for ( I know we all already look great). thus weight may not change but clothing will fit differently , more energy etc. Small steps lead to big changes. You don't need alot of equipment or diet books . Just common sense and sticktoitiveness. Anyone with dysautonomia has that. Once you start its Ok to have a bad day too I have clients that I train who come to me as a wake up for their bad days.because Iwill still train them on mine but I don't do myown i just rest and do my best . that's why they made tomorrows HAPPY TRAINING KITE#7

Hello All, This is my first post but my wife and I have been "spying " the forum from afar for awhile until the courage set upon to participate. I guess a bit off background. After a long journey and a suffering Canadian medical system , I spent a total of 22 days at the MAYO clinic and was diagnosed with Dysautonomia. I am a 39 years old.My Wife and I are Personal Trainers , gym owners and my wife a Yoga "guru" . SO possible I can help a little. let me break it down basically. 1) for 1g of carb you will retain 3 g of water. the way to prevent this retion is to maintain good fluid intake over the whole day. Do not be afraid of carbs now because as we need to eat small it is a benifit to eat Complex carbs inorder to help maintain energy and increase "fat " burning 2 ) the scales are only effective at giving you a proper % when you are fully hydrated and you must weigh your self at same time -- probably @ 5-6 pm for body fat. For body weight weigh when you wake in the morning. Weights will be different. 3) Find a training program that is effective for YOU! That keeps both you outside and inside working. Muscles working will help to maitain weight and fluid levels. Proper fluid intake will allow as best as possible all systems to function efficently. It is important to maintan balance in your joints , connective tissues , as well as your cardio vascular system. 4) break your workouts up into activities You enjoy ; then wacth the water weight come of and your system balance. People usually find a Set Point weight that they feel comfortale at. A 5 lb range up / down know that its OK . worry more about enjoying being active helping your body to increase its ability to exchange O2 , balance its fluid levels ,and metabalise its energy systems. Don't force yourself to do it , but now we 're all forced to recognise it. Sorry for the long winded dissertation , typing is the only way I can talk this long half the time. That's the one thing my Kids fancy about this deal , free time from DAD. but I 've got a pretty descent set of grunts and hand gestures. Again sorry for the length . Hope some help and Cheers to a Soft tomorrow