oh and welcome to what your family needs to know about a taxi out and awareness program about a taxi oh featuring our own resident here peters township  exists at the present more specifically attacks is in coordination of movement that is not the result of muscle weakness it is actually caused by a portion of the cerebellum or a dysfunction in the inner ear or even the safaga in the spinal column in this session the first of a three part series we're going to look at ed's twenty year experiences where he was trying to find out exactly what was causing his many seemingly unrelated symptoms so today ed is here to help us to understand a taxi a better and to share information about an upcoming fundraiser for the a taxi a foundation here peters township in the month of may ed thank you so much frankie and here to share your journey down this road called the taxi out and here's my first question for you today what is your expectation for this program series that we're presenting here i want to make sure that jurors many people are so i can do what actually is took me a long time to find that oneself or yes when years and i want i want people to understand just exactly what to condition is how serious it is and how difficult it is to understand interpret part of the problem is that the medical community doesn't always understand it is well and so if i can share the things that occurred to me then maybe the general public can understand if they start having these things occur to them maybe they have a taxi too and they have to raise your hand say hey i may have it i need help so three pro here understanding the condition of a taxi a appreciating what this all means and getting the medical community on board yet with everything so knowing your overall goal then with this condition called a taxi a can you come to take us back in time and tell us what the first indications were or you're having a problem oh yeah this is been over twenty years ago that this started but it's just like it was yesterday  the first thing i started happening is i started having jerks uncontrollably when i would sleep in bed at night and i wouldn't wake up my wife said every twenty every ten seconds rhythmically by whole body would jerk and you didn't realize that i didn't realize it and i did going but she did he knew it was happening and the the second thing is when i started to see it when i would get up to go to the bathroom in a night i would fall down in the dark i want tripping over and i was in tripoli it was just a fact that i had a problem somewhere in my head in the dark and i'd fall i just i go down  the third thing that happened that really was unusual i thought i'd be driving the car and just the vibration of the car would cause my eyes  had periods my blood pressure was high and then periods were my blood pressure was low very seedy very early on and then i started having obstructive sleep apnea this is where i would stop breathing and hold my breath for extended periods as are concerned just stop breathing totally right so i had that i started experiencing unusual  gastrointestinal feelings real nervous tension like and i couldn't sit i couldn't watch t v i couldn't read or couldn't work or to computer dumb stuff you know and you go to the doctor the doctor d some things are on the air and this is this is the point i was going to get across to the public if they start experiencing any one of these symptoms in association with one of the other ones regardless of the  sequence they may have the same thing happening and they need to go get help yes mine and then what about with what was happening to your extremities that anything happened there after a while well yeah and this turned out to case something that many of the other people that have a taxi have that i have is that the gyro function in both of my ears has been destroyed so that once i start to fall i d you mentioned earlier a little bit about your speech and how has that impacted your speeds well i think that the listening audience can hear me so were my words of our bit and this is something that i'm just in a very early stages of this and from other people that have attacked it i've been around they will get to the point that you can hardly understand what they're saying and along with it goes i  today is something that's new this just happened in the last maybe six months so this is sounds like it's progress is over time yeah it's different things pop up or emanate as you go through your life and things change and i would imagine you were kind of frustrated with doctors diagnosing one thing or another you must have had a breakthrough in this diagnosis and one point lead you to knowing that you have a very unusual very unusual my brother is a doctor and i went to him and i would say this is happening to me and i don't think he believed me part of the time but it just so happened that he was  i was able to lay down and go to sleep at night because prior to that i had been walking the floor her up to two hours just in total distress because i couldn't sit down and could stand up which is going in circles and it all involuntary you know you get this doctor instance an atty who starts to treat the symptoms through a diet approach and then what led you to you didn't have a diagnosis at that point  so what was the next step in your personal journey in this process ok my wife and i were reaching out continually trying to find something and we saw all an advertisement for a conference in philadelphia called the brain converts and not knowing anything else to do we went to the conference and we were walking around the  know a taxi a foundation so we went up to it started talking to the volunteers and all the sudden i had a revelation it was like i was talking to myself and that was a second real cruise wow so now you're treating symptoms through diet you find people who are like you and share similar dysfunction g it wasn't any better so now that you had this diagnosis you're going to have to start i would imagine advocating for yourself yes because this doesn't  that all the doctors don't really know much about it ok so how did you advocate for your sellers that point that i decided i was going to take have to take a greater control of what was happening and i decided to take kind of a holistic approach and get help from any place that i could get and set that point we started looking for for other people i meet it we started going on this diet even though my general practitioner did a per you were greek i went on the diet from the guy in cincinnati i started taking physical therapy because the guy that gave me the m r i said you need physical therapy and then i started on a process to educate myself and did you find any resources out there that you could recommend to people that you thought were really really good the  biggest resource that i ran to was the national taxi a foundation and there are web site and they have a tremendous number of educational materials on their good and so we'll probably be posting that on the screen here so ok people are interested they'll be able to see that did you find anything from the government did they have any materials that were helpful well after i started taking physical technical articles on there and as i started preparing for this particular show i went back and pulled together my article psycho piled medical articles just about the sick every time i read them i learned something new because as i get more knowledgeable about this i can key into stuff that passed me by the first time around it's amazing so look kind of pathway of treatment are you following now at this point in time well i'm following flying the same thing that we talked about the gluten free diet and we'll talk a bit more about gluten free later and are you still taking physical therapy at this just i'm taking physical therapy two times a week and i've also added a a supplement program to my diet in this just the food there are a for your brain i don't know where they are not but a number of people say they are and at this point where there's no cure and no other direction there's nothing for me to lose right to do that so i'm doing that ok and then  and that's about it ok so at the beginning of the show we mentioned that a taxi is very rare and the national taxi a foundation says about one hundred fifty thousand people in the united states are actually diagnosed with this yes and others will argue that the registration is poor and that the number may even be higher than they will realize but what about from which start out with another laid him myself he would to start it all by yourself and when you first started meeting we had about three or four people and in the past year i've talked with three additional people so we've doubled the number we had been there three don't participate with us and one of the things i've done is as i talk with all the people there's a residence to talk about there's a kind of an embarrassment that people don't want to admit they have but a person a should be using cane doesn't want to use a cane my wife will tell you that i know that i should be using my walker all the time but i'll take off to the house you tell us a little bit about the goals for that and how it helps people like yourself yet there are overriding goal is to make life comfortable for people with attacks here and they they engender the support groups like i'm involved in they work very very hard at trying to provide it to cation materials for anybody that generous to do that and they also provide research trying to find a cure for doubled that from twenty to forty just in just a very short period time by the researcher going it's very rewarding to see so you mention that one of your personal goals is to try to raise awareness about a ta and that's going to be happening here shortly right here peters township could you tell us a little bit more about this fundraiser it sounds like is going to be a really neat deal here this will this will be the first of four fundraisers you're going to have this year we're going to a musical concert at a trendy united methodist church has just deplore the hill from the high school here and we'll be having a free musical forces first of all the hob sisters he writes some of his own music and he can play contemporary or he can play really just music as well so the three of them are going to be on a concert on may twenty second starting at seven o'clock have a dumb condition and people of disc warmed to help me they contacted b and said we'd like to put on a concert for you to help you raise money for contacts and that's awesome address is going to is listed on here on the show they're going to show that it ws w w dot attacks the dot org if you want to know a little bit more about a taxi  ed is willing to talk with you directly his email address will also be posted but for right now i'll tell you that it is ed s e d s at a taxi a dot org and you can get in contact with him and he can also get you in contact with members of the local support group of a taxi a and even better news is the following months in june if you're going to be a community day we community day and hope it doesn't rain this year i'm still went to russia and it was a so you're right it was and you are you can have a tent and yeah we'll have a tent set this of course is just a preliminary show and is going to share a little bit more of it to ration about attacks here and probably to at least two more subsequent shows so those of you who are watching this can find out more about a taxi an edge journey through that and i want to thank ed for being so willing to share with everybody here the general community about a taxi a is very helpful i know i've learned a  lot just by meeting with you and talking with you and you've certainly enlightened me and i'm sure that people who are viewing the show would like to take advantage of the opportunity to support the attack see a foundation by attending that concert at methodist church on may twenty second and also by stopping at the booths on june twenty fifth at peter's townships community day so thank you all so much for watching this segment of what every family needs to know about a tax year and we hope that you'll stay tuned to your favorite cable t v show here locally in peter's township to learn a little bit more as as short discusses attacks the in the impacts on the lives of those who contract this condition and how the villa tating it can be but what the potential can be to get through it so again thank you very much ed and i want to thank you and i want to think turner said and for doing this because quite frankly it is very difficult to find any public opportunity to talk about the newspapers are not interested in the other broom in stream t v channel