Kite#7

HELLO ALL, I just had my last appt / visit with My GP who was instumental in helping me work to discover this path I am on now. He is the most dedicated Dr I have ever come across. the citizens of my Town are extraordinarily lucky to have both He and his Wife ( also a Wonderful GP ). During my trials and tribulations it was not uncommon for him to offer to come over to our home if the need arose. He took the extra time to indulge my theories and research and wasnever above trying NEW and Different things. Never did he think that we would not find an answer ,;moreover the concern for my and my families well being as my GP was always the first question fo any visit and any ideas of prognosis. When we decided to move ; it wasn't buying a home. Finding Schools ,buying furniture nor whether to make the move exactly , but will I be able to find a Medical partner to deal with this situation like my Doc. We talk about the Mayo , Vanderbilt , Clevelan clinic et al but if you don't have a professional liason a home it can be all for not. This is espeacially true in Canada with our system of referal. Its maddenning at best - deadly at its worst. When you are struck with a n under studied situation such as Dysautonomia you can easily be mis diagnosed - diregarded or plainly left to contend on your own. For fear of rambling I just have to say that even after tough appts. with my GP , and there were some ( the devils advocate ones) , I always knew he was learning searching , thinking of ways to " FIX" me. That is what I am going to miss and hope to find in my new GP. Luckily the Endo at the Mayo I deal with is quite similar in attitude so I have been lucky. That is not to say I haven't Had my share of "unfortunates" - I HAVE LOTS- But My Gp , HIS Wife & of course my endo at hte Mayo clinic make up for all. I am greatly appreaciative THUS FAR. Although certainly not outta the woods at least see the forest for the trees Thanks Doc if your reading SLAINTE` come to BC anytime Hope you all indulge my little ramble here with some of your own I would like to hear them as we've all had the bad one's and should vent those. Kite 7

Hello All, as we have proceeded further into this discussion it occured to me to include one of my favourite foods Peanut Butter ; But not just any old Skippy type. No its called Power Butter and contains 32 g protein 9.5 g essential fats ( omega 3 / 6 ) , 6 g Fibre , 0 cholesterol , 14 g TOTAL carb. The ingredients are as follows Roasted Peanuts , Egg Whites , Wheat Germ ,Flax Seed , Flax Oil , Honey , Salt . and it tastes absolutely wonderful. I eat the stuff on rice crackers , triscuits Spoons , FINGERS , Oh everything its great with Nutella too. But , anyway as far asnutritional value it is solid. For weight gain I would Highly recommend it as it is About 180 calories / tablespoon. It is very good in Chocolate Peanut Butter Smoothies. I would not cook with it as you will break down the Flax oil and essentil fats. Its too good on its own anyway. I am not sure if ti is available at GNC or not But IT IS a USA product www.powerbutter.com so I'm sure they have links to dealers. Just another thought. Kite 7

Hi Poohbear, Firstly , responding to one of my all time favourite characters / kids too - just brings a twinkle to my eye every time I say the name - its a Blustery Day. To be serious , My two extende trips to the Mayo had this very same Rollercoaster Effect. Luckily my Endocrinologist was/is FORMIDABLE' , just excellent - both in medical terms and bedside manner. He was able to dispell all occasion were I had any misgivings with other speacilists. In fact it tended that mine were also his. We would talk at length about why the misinterpretations existed. His explaintion was that each case presented its own unique problems and that Drs certainly aren't above egocentric behavior. It is also not uncommon for a Doc not to wantto go out on a limb - educated guess - without imperical support - which is tough with Dysautonomia related disorders - Symptoms be ******. Don't be dis mayed by one Doc. The Mayo and Facilities like it are still the leading edge for RESEARCH , however , it is US that will allow this research to move forward. Our persitance , resilance , patience and personal research/stories. Its really the Baseline of their info. So Poohbear don't be disheartened , just going made a difference for those who will follow you. You know what's happenning , keep working to find your answers and along that path WILL be the right Doctors - maybe at the Mayo. TTFN Kite 7

Hi Steph, I agree that over indulging on supplements can be a problem for every one ; 'fraid to say its that kind of world - if 1 is good more is better. However , I still think you are basically on the right track. A good Creatine will have many of the essential vitamins and minerals in a reasonable % of RDA anyway so your absorption should be relative to the ingetion and recovey/ use of the Creatine re: the design. By this I mean the uptake is usually based on a formula uniform to the best ability of the Creatine absorption rather than it being digested and wasted to creatinine , Hence the addition of Calcium and Magnesium. I also firmly believe that Honey is a WONDER food. Yes its a sugar , but in a pure form it is also a whole food with amazing healing qualities from a musclar point of view. In fact the Body builders of Old pre Arnold - Like Steve Reeves ( original Hercules from the 50's ) used it in lieu of CREATINE - that is to say it was their creatine. I would suggest , Steph , that you add it to as much stuff as possibble ie TEA , Salad Dressings , Smothies , Ice Cream etc. The other thing I can't stress enough is to make sure you are getting enough ESSENTIAL FATTY ACIDS - Flax , Prim Rose , Borage Oil Safflower Oil etc. the othr thing to think of is to watch your Calcium intake. As you have had these Surgeries you may be lower than usual on Iron - calcium will help with Iron absorpstion. One pleasnt way to increase iron absorption is GREEN TEA / ROOIBOOS TEAS( MY Personal favouraites - try white the tea of Kings very expensive but MAJOR anti-oxidants) and you can add HONEY. One thing to consider in lieu of COQ10 is N -Acectyl Cysteine , this is an ANTI -OXIDANT that basically will help prevent the breakdown of protein in the muscle by supporting glutithione in lean muscle mass. There are other Amino acids like ALA , CLA , Glutimane , leucine LIst goes on. I would stick to the Creatine as it prodably has some essential amminos in it. So anyway , just a couple more thoughts , Hope all is well in Ohio. I Have A personal fondness for Ohio as I attend the Cleveland GP every year and bought my 427 side OILER ENGINE for AC Cobra from Columbus. The Chop House Ice bar is one of the neatest things I have seen. Oh ther is another thought and serious too A Giunness a Day - lots of Iron - used to be perscribed to expectent mothers in Ireland . Slainte` Kite 7

Hi All After reading the posts , Ihave to make an adendum to mine and AGREE to an extent with Emily. Price is not the only reflection of quality , but if you are unable to speak with experts or quality info/ advise it is " Generally" agood indicator to quality. However , you can find equivalant product at reduced price if you are an educated consumer. That is the benefit of a forum like this - research is your friend - not just for the shear economics but for your health too. Emily , one of the best Multi's I have ever used was a brand called NRG from a company in Vancouver BC - great price point. Sadly , it is no longer available. So don't be cynical as I believe you are right !! Kite 7

Hi Steph I hope all is well with your convalesing and your surgery has gone well. I agree with Gena 's post really she has it bang on really. I too have experienced the wonders of vomiting ad naseum ( pun intended), but , persited with my dieterty plan. At one point I was down to 142 lbs and no amount of training , eating , drinking or meds would stop the slid. Like you , I was at wits end , because I enjoyed eating . Knew that I needed too - despartely now. So I made some ajustments inorder to better facilatate digestion. I got off the reflux Med. I can't recall off hand which but will get back to you. I took fibre supplement in the morning first thing - a well balanced one with both soluble/ unsoluble fibres - Either in my smoothie or separate depending on the flavour O' the day. I would begin the day with a Smoothie - Yogurt - probiotic - very important - Flax OIL / Prim Rose Oil ( any omega essential fat) FRESH fruits choice Protien Whey Powder Protein Soy Powder Honey/Creatine I believe , Steph , that essential fats like PRIM ROSE oR Flax are extraordinarily important. Supplementing with these will aid in a variety of ways , not the least of which is at a cellular level during recovery from exercise to benefit the supplementation of Creatine as it reacts with ATP to produce Glycogen , our Body's fuel. Also , essential fats help with the transit of vitamins & minerals in the body - so very basically will help to balance our systems. I was able then to eat fresh VEG , one my favs too. My WIFE and I would eat Cauliflower , Broccolli , Peppers ,Cukes & other seasonal veg with a variety of soft Cheeses ( Havarti & irish imports - yea Ireland is reknown for Cheese ) , with high fibre salted Flat breads , DIPs. These would be our nightly meals for months. I choose these Veg due to the nutrient value and the fibruous nature. Both cali and broccli have lots of Calcium & magnesium - both are very good for these symptoms as, well they are complex carbs & do not raise blood sugar levevls. She would drink wine though - I would just Whine that I couldn't drink. With this regimin I was able to put some weight back on ( 163 BF 7% ) and best of all no more vomiting !!! YES iI still have GI STUFF ,but I don't think that that going to go any time soon. I thin k that Gena's post is very insightful , and Steph you are on the right track with all that you plan to do with regard to your exercise regimen. I would say , though , stay away from the fast food as a fix as it can cause greater imbalance to the system than you might imagine. Its like putting Disiel fuel in an F1 car - it'll run but... good Luck Steph Kite 7 hope your feelin' well Ps carrots are chock fullof sugar so if you are eating them have a source of protien as well so that you don't spike blood sugar levels - carrots are candy

Hello all, I am presently taking a multi from Progressive Nutrional out of Toronto Canada. The quality is very high - not many fillrs & lots of natural products , enzymes , greens etc. Its one of the best that I have come across here. There are lots of good multi's on the market nowadays though so we are lucky. My advise is that you usually get what you pay for. Look long & hard at the contents ask questions of the sales staff - if they don't know buy else where. I buy mine at Nutrition House in Canada ( Ernie , don't know if they are in Quebec , if you are lucky they have a store in old Montreal , can' t think of a better place to spend the day buying supplements !!). O ther things to look for are essential fatty acids ie. Prim Rose Oil , Borage Oil , Flax Oil etc. ( SISU out of BC Canada is a good product). I have had luck with probiotics , which you can get just from Yogurt , but also from pill form. There are several supplementation s available but nothing is as effective as a balanced diet of Fresh grown Live foods - these will provide the vitamins , minerals , fibres we all need to balance our bodies systems ; then from there any supplementation will be exceedingly more effective good shopping Kite 7

Hello all, It is important to forego the " kneejerk" reaction of deprivation. You have to Feed/Fuel your body for energy!! the key really is when and what. Given the fact we must already take small meals frequently in order to aid in digestion hte ancillary benifit is that this also improves metabolism - think about adding wood to a camp fire. If you add little bits consitently the fire burns strong, rather than big lumps as the fire begins to burn out. You want to keep the fire burning. rather than the rollercoaster effect that saps energy. As far as meals are concerned - eating right is a relative thing. Live foods are a must ( fresh fruits , veg etc) and if you are a Vegen ; this is a , for lack of stronger phrasiology, Stoic lifestyle choice from a nutrition perspetive. You must make sure that you have all the correct supplementation to effect those given up through lack of fish , meats , eggs and dairy. For example , The essential fatty acids , some amino acids ,probiotics, creatine. in fact iit would be advisable to chat with a good naturopath/ nutritionist to maintain this Stoic eating lifestyle. when it comes to exercise for weightloss , It really is a case of regimetation. Finding time , making time , doing the time. Once those things happen the rest WILL take care of itself. Increase your activity level during a time of day when you feel the strongest. Start with an activity that you enjoy Walking , Gardening , Biking etc ; but do it same time each day for a designated period of time. Make a goal . and make this your TIME. Take care of one thing first. decide to get the diet in order ; then try exercise. It seems insurmountable if you look at it as a whole. but if you attack it one thing at a time it can be done easily. Deficit your diet by 250 calories/ day increase your activity 250calories/day x 7 = 3500 = 1 lb without even trying. This is without the increase of muscle mass & metabolism that will also aid in weight loss. Its easier than you think. I written several workout threads in the past Check 'em out. Mostly Swiss (stabilty) Ball stuff. Keeping a steady weight , muscle mass&strong metabolism , espeacially with Meds, is a must as youwant all your body's system's to work asefficiently as possible. Think more energy - hard to believe iknow but true. good luck Kite 7 Ps persephone don't worry about BMI it is an obnoxious measurement and doesn't take in to account one's physical fitness. It was designed for/by the Insurance industry - need I say more. Just worry about how you feel. Find a pair of pants or dress as an indicator that can be Be My Indicator

HI seaboard, all the advice on this forum never ceases to amaze. When we worry about rules and such , you find it is Humanity that really rules the discoures here. any who ; I always keep to mind/ heart these 2 JAMES JOYCE Quotes I am tomorrow , or some future day , what I establish today. I am today what I establish yesterday or some previous day. Better to pass boldly into that other world , in the full glory of some passion than fade and wither dismally with age. with these in mind ; when ever I am having a " problem " for instance I can't speak and am drooling / shaking - eyes don't want to stay open. I'll try to make as light of the situation as possible for those around me. I have THIS !!! I HATE IT. and there are times... But I give my Head a shake ( on purpose) and work harder to live well. Accomodate this to MY LIFE not the other way around. Most days it works. Certainly with the help of MANY but , isn't that the case with anything you do in life - jobs , kids, sports etc. One Momement at time , then many moments make a wonderful Time. Failing that U2 has a song XANAX & WINE love song haven't tried the mix. TAKE CARE Kite 7

Hello all, Don't worry about your weight. This will often fluctuate based on several factors , many of which you have already touch on ; Such as portion size, Meds, MOOD!! and of course the ability to facilitate a REASONABLE exercise program. Its best not to look at it as an in surmountable problem , but to tackle it in association to your Dysautonomia. First we know eating small and often is Better for us - good place to start. Exercise is important for many factors ( increase lean muscle , blood flow O2 exchange etc. ) . so trying to incorporate some kind of regimen - one that fits your life & Presnent conditon ie BEGIN walking , gardening ; then add some resistance etc. ( there are several good threads here on exercise/nutrition) I would suggest though when you chose an activity - regiment it. Make it a specific time. Give an incremental increase of effort each time. And have a goal. Make your meal before and after this activity the 2 most important ones of the Day - call them PRE & POST Workout . These will be the meals that you put the most nutritional value too - at first. Then as things improve , sizes change , body composition changes, Things fit. Do more as you can. Refine more of your meals. The key is to start with one or two things you can change , then change more as you can. I have clients that come to me wanting to lose 25 , 50 lbs or be the weight / size they were 10 years ago. I always say Okey Dokey ; because I know their perceptions will change with the small changes and feeling better. It happens prety quick - usually the first pair of jeans they couldn't fit in last year. Now our situation is a touch different , but Idare sya we as agroup tend to a mental strengh that will allow for little changes in order to have a BETTER day. GOOD LUCK Kite 7

briarrose, Your last post is an excellent example of the measure of import that this forum has for all involved here. The labyrinth of info we all must traverse daily , on top of trying to maintain some semblance of normalcy in our lives I think is typifyed by the support of all in this forum and all its "posts". A common , excuse the pun, thread seems to be obviated thru all posts here ; we all need the forum and we are all capable of freedom of choice. The benefit of information and distraction are sometimes equitable in nature. For one who came to this site not as a POTS sufferer , I apprciate all the posts as they benifit me. Autonomic Dysfunction is Life Altering and so to has this site been - and will continue to be. Kite 7 Ps thank you again briarrose for your post as it is truly informative to those of us that "fall" into those other categories

HELLO ALL, Michelle , I've read thru various post here and must agree with the basic premise that the forum that You and All the other volunteers and various other people have provided ,not only for us , but for those who may just be surfing the net ; is a heartfelt , warm embrace ,library of knowledge & hope. I personally feel we should trust your judgement 'nuff said. Often knee jerk reaction seems right inorder to allieviate problems but often "bed rest" and a little time to cool may well go a long way to rewarding your efforts and healing all these " toes " - as it were. As for the superphluous info and threads ; I must agree if they are denoted prehaps that may or should be enough to cover one's sensibilities after all we are adults and choose to click - common sense should prevail. You do what you believe is right! That way we can all go on enjoying this priveledge that you continue to so graciously work , with all involved, to provide for us. Kite 7

Hi All, First best wishes to Morgan hope all is well. I would reccomend to any on this forum to invest in a descent Heart rate monitor as an Exercise Aid & training tool. The symptoms associated with the Dysautonomias are so varied Day to day , in fact moment to moment it makes exercise ever more the chore it already seems to be. However , a monitor will at least give some comfort beyond those obvious symptoms. Personally , I push quite hard on ,good days , to get and keep my HR in my training zones; it does FALTER , sometimes considerabley. it is no better with Resitance Training or Cardio. each of which calls upon different bioenergetic systems (fast gylcosis /anerobic - slow glycosis /aerobic ) to fuel your muscles. So this leaves a couple options as the heart is a muscle and we require an effecient o2 exchange to preform at a solid effort. 1) Eating small meals certainly , but the timing is most important -- an 1.5 hours is usually best before training so that your have no GI problems whle training. If your body is trying to digest blood flow is limited and its difficult to maxiize HR 2) During training hydration is important - don't wait until you thirsty- sips between sets - or at given time periods . 3) interval training for cardio is important work at getting your HR up & back gradually -- it doesn't have to be done aggressively but if you train your heart to beat and recover it will become stronger faster - the addendum here is to ALWAYS ALWAYS RELAX & BREATHE . I can't stress the importance of BREATHING in aworkout. It is the elusive key to the mind /body aspect of exercise and making the body work as efficiently as possible thus allowing you to RELAX and enjoy exercise. It is as simple as breathing out on exertion in on relaxation -- like a Bellow creating heat for a fire. 4) I find ,personally now , after workout that smoothies tend to work best as post workout meals . This limits the effects of digestion and allows the recovery to start . that way if I do have issues I have aleast taken in a quality meal post exercise. 5) time of day - find one that works for you. For instance I prefer the morning when I am the least impacted by my drug regimen and have have the most amount of rest / recovery without drugs in my system. I personally feel I have a better understanding of my body at this time. I do take some of my pills prior to training. This works for me Iwould recomend you speak to your Doc. But find a time that works stick to it. 6) Hydrate before , during, after, Watch your body temp and make sure that youare relaxed while you are exercising. Don't confuse relaxation with exertion - they aren't mutually exclusive, J ust work at a pace that allows you to come back again the next day. Breathe its simple but boy -- its makes an enomous difference , give your body a " voluntary " shake out . all these things have helped me Most of the time , however there are times when you have to wait until the nextime - that's why they made next times - Oh and HR monitors. good training Kite 7 0

Hi , Having a tough day tody and it remined me of a couple things relavant to this . First my Wife doesn't think I have either so an autopsy should be a moot point and a friend O' mine told me the other day he knows what to tell the doctor next time I go TO EMERG -- If you don't know whats wrong than I 'm already dead just to stupid to lay down !!! Slainte' Kite 7

HI Lisa, I just finished reading the ad for this Creatine and it is filled with much factual info and some half truths. d- Ribose was supposed to be the nxet Creatine , the greatest new addition to supplementation , However it has never really panned out. It is Basicaly will increase your blood sugar levels and act as a sugar in the glycogen replacement during the ATP reaction. Sorry for the merry go round explaination it is excess fuel and does not benefit thru storage intramusclar like Creatime without the side effect of blood sugar elevation. As far as the Magnesium goes , what they suggest is true ; but again there are other brands on the market that have higher concentrations in their mix and for People with Dysautonomias Ipersonally believe magnesium in greater cocentration is of more benefit. It helps to stem fatigue by aiding in protein synthesis and nerve conduction , the latter being a biggy if you experience any tremor or crampimg like I do. ( Hence the superior typpping skills hehehe). THere are various Other things to look for in the mixes such as the additions of Amino Acids and I THINK the most , well, I think really the best and most efficient cost effective way to buy this STUFF is to go with the quality names EAS , LEAN BODY , METRX , AST , Ultimate Nutrition, etc, the reasoning is that with Creattine you do get what you pay for!!! I would also try to stay away from anything that you are un sure of , fads. YOU d- THIS or q - 567 -that etc. if it seems to good it si. If price is an issue , and with Creatine it is. buy all your health food needs at the same place or get your local pstore to order in. But buy Quality . If its any Help I use EAS Phosagen , Betagen (with HMB basically a metabolite of essential ammino acid found in mother's milk) and Lean Body. I switch between them for flavour and substance. Hope this helps sorry for the spelling & typing Bad day goood Trainin' KITE 7

HI Ann I just flew last week Ontario to B.C. Wasn't good!!! I have avoided flying for the llast 3-4 years due to this. In fact first time I flew in years was to the Mayo. I would send my Family on Vacation without me to avoid it. Once I knew what track I was on and Life is to short I decided its time to fly again , But I DO NOT LIKE IT... It doesn't matter the size of the plane , although the bigger ones are less bothersome. Take off is the worst. I have similar events to what you describe but , usually end up with trouble breathing , eyes won't stay open , veins disappear ( my arm's become like roadmaps of were my veins were , like little canyons) the ol' facial fasciltations ,droolin' and then out and the pass out part is if I'm lucky. Landing , well its usually not as bad. depends on the plane and descent. We have taken to warning the airline before I fly so there is no , you know , confusion, and we go on. But its rough. I am moving this summer and instead of flying I am driving. And no not me , I have Friends who have graciously accepted to take their vacation to drive out with us. These are the Dysautonomic changes in Life, I'm glad though I have a least some Idea because at least I deal with the flying now. No more almost the Whole family vacations. Up Up UP look out Up away Kite 7

Hi, You are dealing with a truism when it comes to the info about fluid intake because it is a dynamic statistic. It is interdepent on many other things for example - your diet , actvity level , fluid loss ,sodium/salt intake , bp/hr, etc. There are several mitigating factors, but in general you can drink to much fluid in a sitting. When this happens you become hyperhydrated and will experience many of the same symptoms of dehydration - such as headache , nausea , dizziness , fatigue, etc. Over a longer period of time ,say, 24 - 48 hrs ; You will begin to experience vitamin and mineral wash. The higher volume of fluid will literally wash essential vitamins &minerals from your body through your urine. If you increase your fluid intake beyond the RDA of 8-12 cups / day be sure to eat a balanced diet relative to the increase. The diet should be vit/min rich (live foods) , but also high in fibres - both soluble & in soluble so to maintain the effectiveness of the increase of fluid. By doing this you will allow your bodies systems to work more effieciently and not just over -burden your kidneys. Slainte' Kite 7

HI Steph , Sorry to hear that your recovery begins with such regretable treatment, but at least your at HOME. I always liked to get home ASAP after surgery. Just feel better !! My own stuff able to exhale -- usually in great pain. I came home the next day after both my neck surgeries ; quite against Doc orders but worked out for me. In fact the first one , the day after I arrived home my dear Wife went in to the hospital for emergency surgery. Her appendix had burst. We really looked liked something going into the hospital. I had an 8 inch stiched gash across my throat and she was doubled over moaning in obvious trauma --- Certain Domestic-So there I was , rather then in a hospital bed quietly convalescing , I was caring for (then) 3 kids under age 4. Unable to turn, lift , or bend my neck/head. My Wife in the Hospital for 5days. Needless to say recovery was quick. As the kids and me would trundle down the corridor of the hospital ward each day, rubber boots slurrping along the floor, the Nurses would greet Us with wide eyed amazement and tell me that my Dear Wife was enjoying her "little" holiday. Needless to say , as the next surgery roled around I was a tad reticent to come home early--still did. I do still feel strongly that you heel better if you can truly convalesce in familiar and comfortable surroundings and sounds like your all set up. So Good Luck & Slainte' Kite 7

Hi Susan, I would ask maybe you go through Lisa's Thread about Creatine and see what you think as this might help to allieviate your weight loss , or at least stem the tide and give you a steady weight range / improve energy. I would also think trying to eat bit more complex carbs might help , like cearals , oatmeal ( add honey its a great equalizer , a natural SUPER food). I eat this cearal called Jordan's Museli and its other iterations , sometimes with yogurt instead of milk, when I need to steady my weight. Smoothies are also great way to help and say nutritious. add a bit of Protein powder for weight gain ( not to much though as you want to add slowlly and keep your metabolic rate fairly tepid and digestion could be issue with too much protein). Susan, I have also ranted on about exercise on some previous posts that i think would be relevant to this situation. I would stay away from Cardio and do Core/ Resitance very light , in a chair -- on the floor and of course with a Swiss stability ball to start. Even just a few minutes / day will help to mitigate your issues. Certainly won't stop them But , may help make then more livable , heck , even enjoyable. from there , Small meals , live foods , fluid intake (not just water ---tea ,even coffee count) Good supplementation ie omega fats 3,6,9 ( evening prim rose - flax , borage oil etc.) a good multi and you should start to see some weight. cheers Kite 7

Sincere Respect ,Admiration & the greenest of Envy, Peresphone this is certainly a preferable method to the association and attachment of another acronym with your name. There is a lyrical nuance to BA , MA ,PHD ,POTS. You should be "Super Duper" proud its quite an accomplisment and your next course of study sounds , well MEDIEVAL and thrilling!!! "Writing in English is the most ingenious torture ever devised for sins committed in previous lives" James Joyce Slainte` Kite 7

Hi Steph, Wish you luck too! Sounds like from the other posts your in great shape ; Mind if I ask what happen to your ankle ? Is it a running injury. May have have some Obvious rehab advise that you probably know. Anyway good luck !! Slainte'(good health) kite 7

HI Lisa, Yes I am a Trainer. My Wife & I have a Personal Training /fitness /Yoga studio. The training is all done on a one to one basis so that I can fit programs to the needs of each Client ; be they Athlete , Rehab , or general Fitness --- its great fun. I've been Training ,personally , for about 25 years , some of those at a reasonabley high level. I will say that I have learned more though in the last few ,not nessacarilly about weights , fitness etc . but the actual affect of exercise on the overall system. The Body is an amazing thing as simple sometimes as it is complex. good training Lisa Kite 7

Hello all, Happens to me all the time now. YOUSED tobe s mart as awhip n spel well two. No really I find myself in the same position. A friend of mine calls it Sometimers. It has become progressively worse past few years. Quite noticeable to friends not just family. Oh well part o' the deal I guess. Slainte` Kite 7

Hello all, all Beatles , U2 any Irish ie Chieftains , Mary Black Dubliners , Van Simon & the other guy OH lets face all music in the right car see ya Slainte` Kite 7

Hi Catherine, I feel compelled to greet you as I was struck by some of the phrasiology of your post. I think that you will find an innate spirt here that exceeds boundries of religiousity. We are not bound by hopelessness , pain "HOLES" to climb out of from time to time but I think a connection that we are a unique comunity of Individuals of whom experienced this yet under studied medical condition (certainly not strong enough word on my part). It is important of course that we each have are own course , goal and aid to help us to move forward gather ourselves up on those days but , here is the Oasis. It is the place of understanding. No judgment. Exchange of information without ridicule or fear ; Ioften see the phrase no question is a bad question. I suspect that many backgrounds ,age groups ethnicities , religions encompass our Oasis here. Isn't that the thing about Illness -- ultimate equality -- no one is spared. I suppose , without judgement nor malice you could discuss at great length , better & greater than I certainly have tried , who ' s plan it is and why. But really I think that is for another forum personally. Like you I have learned alot here not just about Dysautonomic Disease , But about the people who deal with them. No Hopelessness -- Dependence maybe. Welcome to the Humanity of Illness and now feel , without judgement, malice and certainly on my behalf , the Humanity of this forum. Enjoy it Catherine the people here know of what they speak. Kite 7