Kite#7

HELLO ALL, Its ***** to be right ; but all the indicators were there for my Kids. 2 have been officially DX'd with others to be tested . As I have stated in many of my last posts I have rcently purchased a POWER PLATE which I am putting extraordinary faith in. I hope it will be the godsend I am expecting for ALL of us. I read with great inspiration the stories on this forum so I know my Kids will be Okey Dokey. However, it is always better when its just you!! Kite 7

Hi All, Magnesium as a supplement is great for nerve support and smooth muscles opperation. It helps to in the operation of , motor unit function(nerve to muscle/connectivetissue messaging ) as well as calcium absorption. It is recomended for blood pressure and tremor due to these aspects. I use it in combination with Creatine and a compliment of B vitamins Calcium, Potassium as well as Essential Fatty Acids , in support of these conditions. I hope this Helps a bit. Kite 7

Good morning Nina, What an Inspired Goal !! As always , I would suggests you re-examine nutritition program as you have signifcantly increased your regimen for a particular goal . When the specific RACE DAY comes - be sure to prepare nutritionally - ie HYDRATE - DAYS before ssodium intake CARBs - complex to simple etc. I think with your history of SPINAL problems and with the pounding that is inevitable with running, GOOD SHOES are a must. IT is worth the investment. Even if you never enter another race ; having a really good pair of shoes will help to balance your running style and give you more comfort,Perhaps alieviating some of the lower back throb. This could be caused by hip movement during running , rather than weakness in the back per se. Also want to make sure that you stay completely relaxed thru your upper shoulders as this will also allieviate tighness in the lower back. The more relaxed your upper body is , so becomes your breathing , thus becomes your stability thru your abdomen - relieving stress on the low back. The good shoes you can always use after the race TOO. Good luck !! HAVE FUN !! kITE 7 Ps not just a PT also had 2 cervical surgeries /plated c3-c7 & 2 lumbar , lucky THOUGH no thoracic yet but still tryin'

Hello All, Mighty Mouse , the reason you feel "bad" during the first few minutes of exercise is because your body is going thru what is called the EXERCISE RESPONSE. Our bodies start in O2 defict and try to catch up , thus increase respiration. Basicaly, You are using the stored O2 from your muscles in the form of ATP / GLYCOGEN to intiate the exercise and get the muscles , conective tissue and joints moving/ reacting. It takes approx. 2- 3 minutes to equalise breathing , o2 intake , heart rate to a comfortable level. this is true for all people. It is important to prepare for exercise. You must be sure to Hydrate prior to your workouts. This will help to prevent lightheadness , bloodpressure drops ( inas much as we can) . But hydrate hours before your scheduled workout aswell as during, It is also important to make sure that your diet is in order. Pre training meals are extremely important to haow will feel during and with recovery. As are post training meals. Do not discount Sports drinks. As far as my feelings about TRAINING - That is well documented in past posts. The PILATES REFORMER is a wonderful machine but , extraordinarily expensive .I believe the machine you are refering to is the Total Body machine, My take on this is anything that helps you to perform exercise properly , in a balanced , safe , Inspired way -is worth the investment. As is the hourly rate of a good referenced Personal Trainer. Kite 7

Hello All , As most of you know I have recently moved to BC from Ontario with my LARGE but wonderful and supportive Family. To make that part of the story short ; It has been and is FANTASTIC !!! Weather and lifestyle certainly are helpful. Not to mention just plan Fun ; as was our trip out. However one MAJOR casualty of this move was that I sold My Personal training & Yoga Studio. So I no longer have an extensive array of equipment at my disposal , nor do I have My inspiring clients to motivate ME whilst I train them. I did try to train in a public gym here , but it was difficult as symptoms would expose themselves. So I decided to buy some equipment to maintain my very specific regimen. I bought the basics so all my Family could Train But I have been reseaching this VIBRATION technology for sometime now and saw that POWER PLATE WAS OFFERING A HOME UNIT. I have been , as you are all probably aware, using wobble boards , Med balls , Swiss Balls etc . to create a similar effect in my training as you can recieve with this MACHINE. With weights & wobbles etc. it is very involvrd & requires time. With the Power Plate it is Quite simple & requires 15 to 20 minutes 3 -5 times / week The BENEFITS of this technology are many fold. Primarly it will help to increase BLOOD VOLUME and manage BP. I t will help to balance skeletal muscle and increaase lean muscle mass. It does this by working deep into the muscle groups and connective tissues using more of the fibres and creating more capillaries stonger & more dense bones. This also improves O2 exchange. The machine is helpful in improving motr unit function as well with the increase of muscular balance and use of more muscle fibre thus improving messaging of the nerve to the muscle. For more info See the web site www.powerplateusa.com . There are other units on the market ,however I don't believe any offer the home unit option. I will be recieving mine in about a month so I will keep you posted about its effectiveness. I do recomend that if you are interested check out some of the research on the web for various machines. The original technology was invented in Europe and machines are available in Germany & I believe Italy. It is not a MAGIC pill ; ButI do think with proper nutrition it could be A HIGHLY EFFECTIVE machine to help in our fight against DYSAUTONOMIA , EDS ( which my kids are now being tested as my WIFE has MVP ). The home unit is about $ 3,000 or about the price of a good Multi Station or Elliptical - The commercial unit (which I ordered ) is about double. the difference being the size of the unit Basically. Both units come with resitance straps and you can use Med balls , weights , swiss & Bosu balls with them. SO THAT IS THE POWER PLATE by the by I am in NO WAY affiliated with power plate - just a CONSUMER Slinte' Kite 7

Hello all, Thank you again for your kind regards The POWER PLATE technology that uses high frequency vibration basicly to elicite nerve impulse & deep muscle movement. IT was used in Space to prevent muscle atropy and bone lose. Presently it is in use by many Pro sports teams , RE-hab centres ( Johns Hopkins et al ) and some large commercial gyms . It is recommended for many illnesses such as MS ,ALS . Although these are CNS diseases - I am of the opinion that increasing lean muscle mass and balance , as well as bone density will ultimately help with blood flow. This is 2 fold O2 exchange should ultimately improve as well as vacularity . The benifit of the Power Plate is that it is LOW or NO impact. YOU CAN DO YOGA or JUST STAND ON IT TO BEGIN . IT REQUIRES about 20MINS / DAY. I have been training in earnest for many years and have designed a regimen for myself with these goals in mind , However , it is RATHER intense given what I/WE deal with on a daily basis - HOWEVER IT IS WORTH IT !!!!! But I feel - my humble opinion- now that a HOME unit is avalable , that the Power Plate is a Definite Option. One I am think about SERIOUSLY . Check it out at POWERPLATE USA I have been talking to joe.koehler@powerplateusa.com .He is a VP there and has been very helpful thus far. Oh and by the way I am in no way connected with PowerPlate. It is a technology I have looked at on & off for several years . It has only now become affordable. Kite 7

Thank you Steph , Gena Needless to say the move has been an enormous event for all of us. My 5 kids have adjusted beyond all expectations and enjoyed their summer travels driving accross Canada. We were able to take our time to move which certainly made all the difference in the world so some of the usual pressure was off ; plus we JUST commited to taking our time and enjoying the experience - NO MATTER !! The drive was phenomenal - I drove 1 vehicle and my wife drove another. Suffice to say , we stopped lots. That was the neat part - kinda like our own little convoy. LOTS of STORIES. Our new house is more fitting , literally, for us ; SO that has made life a little less stressful. Not to mention the weather is far more temperate. Steph , I sold my gym !! I missed it very much . Having all that equipment was certainly an impetus to train ,but further to that were the PEOPLE whom I was training. They infact , kept me going. They kept my will strong on those days I could have otherwise folded. I have bought new equipment ( less of course) , but it is that I find the most difficult. I am thinking about investing in a POWER PLATE vibration machine. I have read quite a bit about this technology and thought about it for my studio but felt it was cost prohibitive. The idea though is very similar to the regimen and results I try to achieve with my my personal workouts. I believe using wobble boards , Bosu balls , swiss balls - med balls etc. especially with resitance can inspire motor units , blood flow etc. Anyway , I won't continue to blather on here . Its been a long time between posts. I gonna keep looking back and keep training when I can . I will keep you posted about the POWER PLATE kite 7

Hello all, Jennifer, I have written many posts on exercise regimens , if you recall them perhaps your queries maybe answered if they have not already. Steph always provides very experienced practical advice so you can be certain that her regimen is "tried & true" . I would suggest that you work at no more than 70% max hr ; finding this is easy 220 - age then 70 % of this number. Jennifer , there is a difference between doing Cardio and Resistance training as it affects both your heart rate and the way your body utilises energy. So with that in mind , finding a regimen that incorporates both is best. I also believe that core training /stability training is extraordinarily important for people with Dysautonomias given the variety of symptoms. In fact , in my own training it is a staple and since I have recently sold My Gym I work mainly with wobble boards Swiss balls, medicine Balls ; until I replace my equipment with a home system. Further , I hope all have had a Great summer - My Family & I made our move cross country and are finally settled in , I twas quite a TRIP !! kite 7

WELL DONE !! this is a wonderful post echoing experiences we all share in common. Well written , amusing (to us) and frightenly accurate. You soon realise as a Patient that you HIRE them to facilitate a service for you - your treatment . That being said ; like no other "service" industry your characterisation properly implies that we expect a level of expertise commesurate with the Docs education, facility , credentials and of course FEES. We don't expect to be denied co-operative treatment ; with this I suggest that even thru the stress of diagnosis a Doctor should do there utmost with the Patient to achieve an outcome - not pass the buck as it were. The ease at which mental health issues / physciatric evaluations are bantied about for Dysautomia Patients typifies the lack of understanding in the Medical community not a disconnect. Unfortunately , they want to leave it in our hands. They require us to do the work. To bring them the Evidence as it were. The frustrations ,anger and sometimes fear are valid; It prevented Me from going to the Mayo until my family could stand it no longer. Fortunately , I've had an inspiring GP and Doc at the MAYO both of whom make all the other ones , and believe me I've encountered my share, SUPERPHLOUS . Its my opinion that the regimens are all basically the same. the appt end with the same pats on the back. Test results vary with little imperical difference. Yet, WE know symptoms can and do fluctuate beyond the pale of normalcy. Its encumbent upon us , at this time , to do all we can to YANK this profession into treating this DISEASE. Until then the most powerful treatment is getting up in the 'morrow and finding what works for you , then journaling tellin' the Docs and so on . There is no doubt that stress manifest itself in Dysautonomias , DUH !! It affects the autonomic nervous system but to assume that we are all nuts first is to discredit a REAL oppurtunity for science and research. First thing Isaid to them at the Mayo was that I was nuts and for the benfit of my wallet lets stick to Imperical testing first. Again Ithomas great post Point well taken and presentd ; probably what brought alot of us here. MOVIN CROSS CANADA TODAY Kite 7

hello all, Sorry copied it down wrong. Amongst the few things Ido well you can excluded typing , or ANYTHING that is remotely assiociated with Technology. Presently , my computer has become a mobile unit and I find myself haing to uncrate , unwrap and DE - box it several times per day. So this to is my excuse de jour for incomprehensible web links . Deeplyset if you just try again and remove the p after BMP ie jnnp.bmjjournals.com - then the rest is correct Again my applogies , However futher to this frustration I have in my possesion 75 ft of bubble wrap - Ihave to say it is some of THE best stress relief. What can I say I have 5 kids my Wife has 6. seeya Movin' cross Canada Today Kite 7

hello all, I found a great article while back dysautonomia after traumatic brain injury from the University of Sydney Australia Neurology dept. http://jnnp.bmpjjournals.com/cgicontentfull/67/1/39 In fact in my searches over the years I have found many comprhensive sites in Australia. Kite 7

Ithomas, I have to agree with some of what you describe, having experienced myself. I went to the Mayo twice for extended visits at my own cost. My first two week session left me with more questions really than answers ; and many Imperically stable test results. . Due to the imperical evidence Questions arose from one Doc. At which point extended my stay to go thru further exam with a Neuro Physch , which I left "passing" with flying colours ( pink ELEPHANTS). My dx that visit was possible Parkison's / neuro muscular disease - Drug regimen , watch your exercising and return in a year . Didn't make the year. I went back and thru another battery of tests. Suffice to say it was another Two weeks ; still had one doc question my mental well being. H e obviously had not taken the time to review the previous visit , talk to my managing Doctor , or Me ; and above all was most interested on / in the imperical tests rather than the developing symptoms evidenced by my two visits. I guess what I'm getting at with this is I was / am lucky to have a great managing Dr at the Mayo who did see the problem and correctly recognised my symptoms , but I would hate for you too withdraw a tool out of your arsenal because of your experience. As far as wasting money on a Trainer ; its like anything if you find a qualified one to help and advise you to set up at home you won't need them long and it will be an investment to your future. I admit I''m bias as I am trainer / gym owner , hence my impertence towards the suggestion that exercise doesn't help. You know your body better than anyone - describe your symptoms to someone who wants to help , who can develop a program around and for the "benefit " of those symptoms. I don't mean to be flippant about it . I practise what I preach -- It has saved me. On the days I can't exercise I take my time and change it up -- hence the museum walk or I just relax exercise my mind , but its my time set aside - training against this STUFF. GOOD LUCK & Slainte' Kite 7

Hi , I certainly agree with the gruelling part. It sounds like you have had some interresting , to say the least , experiences with mis DX. But don't give up on the exedrcise regimen / and nutrition as being applicable tools to lifestyle improvement.; especially for metabollic disorder. Have you researched Creatine monohydrate , Calcium ( to help with iron absorption) , even something as simple as Green & Rooi Boos Teas for hydration ,antioxdants & again real aid for Iron absorption. One of my clients actually began giving this tea to one of her Race Horses that was having an Iron absorption issue - needless - to say with the addition of calcium & the green tea supplementation the Horse saw real Imperical improvement. I think that it is the messanger not the message that you object to. We have all been treated as inferiors ( for lack of stronger less polite phrasiology) by Doctors , however , with this disease you have to listen beyond what you hear. Its not the manner in which you are being told. Needless to say , an inspiring traverse thru a museum is and can be EXERCISE if you make it your time - a regimen. Provide yourself with specific goals. Physical as well as mental. then you particpate in your treatment - GOOD DAY or TOUGH DAY We all have had them Doctors too!!! Exercise manifests itself in many forms - you chose. It doesn't have to be grueling to be effective - research it get a trainers advise. Develop a regimen that inspires you to preform - for your benefit .... not the doctors . I f for no other reason than to have a time to focus on yourself on trying to IMPROVE your health . that time each day 5 min 10 min half hour doesn't matter find the activity . that's the begining .I've seen it countless times. Good luck Kite 7

Hello All, This will be rather a short post compare to my usual long winded diatribes as we are in the midst of packin' to move cross country and this heat is killing me so don't have the time. Suffice it to say EXERCISE will ---WILL help you !!!! no IFS ANDS BUTS or OTHERWISES about it. The problem arises when it is PRESCIBED mindlessly. The regimen is what is important. The how , what , when. All of these things MUST be thought out as part of your health regimen ; as much as DRUGS , DIET , PHYSIO , ETC. the manner or approach should encompass a goal requisite to helping your condition. Increasing blood flow /volume , lean muscle mass , O2 exchange , fluid retention , managing HR & BP . These all can be aided & affected with the Proper exercise and Nutrition ( to include supplementation ) regimen. Not to mention the mental aspect involved ; the physilogical release of endorhiphin. It not about being TOUGH. anyone affected daily - dealing with these Dysautonomic Diseases are "TOUGH" mentally and physically. Its about taking action ; helping in the process of living. Its about quality of life. Nobody should expect to work beyond the limitations of their bodies ,but you also don't want to limit your body from working. Research , and start new things as exercise takes many forms - But YES there is no choice Exercise helps. Kite 7

Carmen , I echo the sentiments. We have been married for 18 years 5 Kids. During our Marriage we have enjoyed a wonderful life with the ability to make descions that have gifted us time with each other and our children. In retrospect pretty smart or just lucky. I would not Have survived without MY WIFE -- PERIOD. the strain was , at times , to much to bear ; only because we cared so deeply for each other and our family. Being Ill you feel inately selfish and hurtful , especialy when there is nothing that can be done and you are just getting worse. The strength of a PARTNER & FAMILY then becomes the power beyond anything. It is the vehicle that drives you to keep going. We realised it was not the destination but the JOURNEY - JOUR (DAY) everyday that mattered. We would use this crescendo of power daily. So now its as Somerset Maughm exclaims - each life makes its own imitation of immortality - We happen to immitate each other , thus to be a legacy unbreakable by a simple illness Slainte` Kite7