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October 8th, 2009 by Dr. Phil

Alex's Story

AlexRobin and I started The Dr. Phil Foundation because we wanted to help disadvantaged children and others who are less fortunate, yet still want to pursue what has come to be known around the globe as “the American dream.” When we heard Alex’s story on our son Jay’s show, The Doctors, we were so moved by her struggles that we wanted to try and help this young woman achieve her goals despite her difficult circumstances.

Alex, 27, was a dancer when she was stricken with dystonia two years ago. Dystonia is a debilitating neurological movement disorder which causes her muscles to constantly involuntarily contract, keeping her from participating in many activities we take for granted and robbing her of so much quality of life. Recently, with the help of Montel Williams, Alex was evaluated at Massachusetts General Hospital. When she appeared on The Doctors, they revealed that she is a candidate for a very specialized brain surgery, deep-brain stimulation, that may very well be able to cure her condition! But — and isn’t there always that darn “but” — it is very expensive, and she will not be able to have the surgery without financial help. Robin and I are going to help out, and you may be moved to do the same.

I encourage you to check out her emotional story, and if you feel inspired to help this young woman be an active participant in her life, please share whatever you can. But for the grace of God go I.

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23 Responses to “Alex's Story”

  1. Heather Telford says:

    My Grandma has distonia and has suffered terribly for years. She is an amazing woman and doesnt ever complain. Could you please help her??

  2. Salwa says:

    Dear Dr. Phil,
    My heart goes to alex because my son Moannad Al Hajjar has the same disease. He had a brain injury caused by a car when he was 16 years old. He is now 27 and he developed dystonia 4 years ago after he just started walking again with braises. It stopped him from being able to walk as he can’t control his balance. He currently takes a number of medicines to try to control the movement.
    We also contacted Massachusetts General Hospital and they confirmed that his condition could improve with their treatment but because we are from Saudi Arabia and it would be really expensive for us to go there, we are now trying with our government to cover his expenses.
    However, I really would like to contribute in helping Alex as I know the diffeculty of this disease.
    Thank you for sharing her story.

    Kind regards,
    Mohannad’s Mom
    Salwa

  3. Shawn says:

    Dear Dr. Phil,
    I saw her story yesterday on the Doctor’s It was sad. I’m Disable in a wheelchair. I know what it’s like to go through something. Some people even judge u. When I was younger some people would stair at me. My heart goes out to Alex I hope she gets the help she needs.

  4. All the best to Alex. I saw this show this moving show with Alex and Montel Williams on THE DOCTORS. I noticed that clinicaltrials.gov is recruiting in the area of dystonia…

    http://clinicaltrials.gov/ct2/results?term=dystonia

    Dr. Phil, it could be for some of the persons you help, via THE DR. PHIL FOUNDATION, you would be able to help even more via Clinical Trials .Gov such as deep brain stimulation if person(s) meet criteria for study. Montel Williams does A LOT of great work helping other as do y’all at THE DOCTORS, DR. PHIL SHOW AND THE DR. PHIL FOUNDATION. May all y’all be especially blessed since you are such a blessing to so many.

    Sincerely, SEA

  5. Michelle Carter says:

    My dad had this. It was so hard to see him live with it. I just want to say to Alex I will pray for you. I will say a pray every night that you retun to the dance studio.

  6. Janet Davies says:

    Help is on the way! Ms Alex, I want to see you dance! With faith all things are possible!

  7. doggiekisses says:

    Alex,

    I saw your story on “The Doctors.” I am so sorry you are suffering, and I pray you will receive enough financial help to undergo the brain surgery that will improve your dystonia and your quality of life. I believe you WILL dance again! You are in my prayers, and I will be thinking of you. Thank you for sharing your inspirational story. May God grant you the blessings you deserve always.

  8. vince says:

    at this time all i can offer is a prayer, wish i could do more but this is all i have to offer and God does answer prayers i know.

  9. Blgspc says:

    Dr. Phil & Robin

    Alex is an inspiration and it sure helps ME feel better to be offered the opportunity to contribute to what will hopefully help restore this lovely young woman to a better life experience, even help her fulfill her dreams!

    I NEED to say again that I am always grateful to you both for establishing a means to help folks like Alex and at the same time offering viewers like myself, the chance to join BOTH of you in helping! It means a lot!

    Thanks, Again!

    Brenda

  10. Anita says:

    I had never heard of distonia until this story. Then right after I read this, a story was featured on one of the news programs, about a young wife, who has been diagnosed with distonia. Strangely enough, she can walk backward, or run normally, but cannot walk forward and has trouble talking. She, like Alex, is a beautiful, brave young woman willing to come out and talk about her condition. She, and I believe her dr., think her distonia is a result of getting the H1N1 flu shot back in August. They say it is very very very rare for this to happen as a result of a flu shot, although, the H1N1 shot has only just recently become available. Her dr. said a person should be much more afraid of getting the H1N1 flu than to be afraid of getting the H1N1 flu shot. My prayers go out to these 2 brave young women, and I hope that a cure or treatment can be found and I hope that Alex can have the brain surgery and that it will help her.

  11. F.D says:

    My heart also goes out to Alex. A few years ago I watch a medical doco in which an middle aged lady had distonia, I would never wish it upon anyone.

    Anita, oddily enough I told my doctor today I refused to get the H1N1 vaccine, and he told me he was advising patients against it. I refuse to get it because as a science student alarm bells ring when a medical treatment is rushed into the market. My doctor also said a friend told him (I stress this could be factless) that the vaccine may contain mercury. Mercury preservative are added to some vaccines.

    Having completed a toxicology unit some years ago, mercury does affect the CNS and cause neurological disorders.

    I hope the treatment she needs to undergo cures her disorder. I wonder if the same treatment can be used to treat epilepy and order neurological disorders.

  12. Linda webber says:

    It is terribly sad that living in a country as rich as ours citizens are unable to afford medical care.And this is why we need National health care reform.

  13. Debbie says:

    When I was 7 years old (a long time ago now), I had a stroke. There are days when my left arm and leg muscles are so tight that it affects my walking or my left arm/hand just pull in so tight that I’m tired in the shoulders by the end of the day. My muscles on my left side behave like yours but not to the same degree.

    But, I have a responsible full-time job and supervise a wonderful staff of people. I have a husband and two great kids. I have two college degrees. Over the years, I have learned that I tend to be the most bothered by my problem. Most people don’t realize there’s anything wrong until they have known me for some time and that’s only b/c they finally notice how I have adapted. Or, it’s because I letgo in front of people I have known not realizing they may not be aware of my problem. It doesn’t matter which.

    I’s like to say I have a great insight here. I don’t. You can hate what’s happened and its effects on you every minute of every day. You have every right to feel that. But you also have to learn to let it go. My mother, in her wisdom, never shielded me. She forced me to do what everyone else did. I hated it at times, but I did it anyway. Life is about trying and doing. I understand your concerns about being judged. I worry about it too on my bad days. Funny thing is, most people tend to be very understanding and because I ignore it, they do too. I think fewer of us would judge or be uncomfortable by your spasticity than you might think.

    Alex, I can’t dance a lick but I coached a high school dance team for two years b/c my daughter’s team needed a coach. I read your story in part because of the tie to dance. Don’t give it up. I can’t help but think that the music and dance movement will serve to your benefit.

    I don’t know what cures or treatments may be out there for you. Pursue what you can, but in the end, it’s up to you…a smile goes a long, long ways. As does a shrug of the shoulders and a good sense of humor.

    And you already have friends in high places that most of us will never have, like Dr. Phil and Montel Williams. I’d say you are off to a pretty good start.

  14. Kristin says:

    Please help us! Just a reach out so I know you are getting this would help. My husband beats up on me everyday and last night was no different. I want to see my children grow up and have children of there own. I know if I have to stay here that will not happen. I do have some faith but it is going away. I have been in one bad relationship after another but this relationship is different I married him and his children. I cant call the police he takes the phone and when ihave gotten to the phone and called I got beat up after they left because I imbarrssed him. My children deserve better. I derseve better. Please contact me threw email or phone. Please

  15. Candie Sterry says:

    Dear Dr Phil,I was in a car wreck Nov 18th 2007.They lost me a few time and when I stopped breathing they put me on the life support machines and put a breathing tub in my chest.I was in the passenger seat asleep and the lady driving was going down the interstate about 80-85mph.She hit the back end of a camper and the SUV that we was in started flipping,and it flipped about 8 times”one of my witness said” then it stopped flipping and then it started sliding down the interstate on the top of the SUV and I was sliding down the road on my head! I have a very bad and big bald spot on my head where hair will never grow back because it took the roots off my head when I was sliding down the road!I had to have 2 surgeries on my right elbow,2on my right shoulder and lots of Physical Thrpy to teach me how to walk,talk,eat,and even give myself a bath again.I would just like to speak about this to young people that think they can talk on the phone,or tex on the phone and drive! That’s what my driver “Christine” was doing when she almost killed me for good! Thanks Dr Phil and Robbin for being such a great part of my life! May God Bless you both and you are always in my Prayers! I sing in the Choir @ Church,so if your ever in Tennessee,close to Murfreesboro call me and maybe you both can come to Church with me on a Sunday morning! I go to the River of Life on Sam Ridley Parkway in Smyrna Tn. 615-753-3637 Love you,and God Bless you everyday! Your favorite fan,Candie Sterry

  16. jeannie s. weaver says:

    dear Dr.Phil, i try to watch your show as much as i can. i really can understand Alex’s emotional trouble. i was dianosed in 1999 with deterorating disc disease. at the time i was a single mother with a good income coming in. well i had back surgery in 2000, they said i would be 100% better after the surgery. well needless to say it was alot worse. i couldn’t go back to work, and i had to ask for social services help, which wasn’t much. i finally got disability but by then i felt like i was worthless, helpless(in some things) like i was trapped. i couldn’t do much house work or anything. well then they dianosed with bipolar and fibro. well i still couldn’t do much. i feel worthless when my second child(8yrs old) needs to go to the library or somewhere else and i can”t take him. i do have a husband now of 7yrs but he doesn’t understand. i went into a psy unit last year, i stayed 5 days. at the time i was forgetting everything just on a down hill . i wanted to kill myself if it wasn’t for my children and my beleif in God i probably would had followed through with it. for example about forgetting my husband told me i made him drive me to some yard sales, with his anckle broken, he said i made him stop at 2 yard sales, he said i spent about $150.00 between the 2.ha/ha. i went to my mother-n-laws for easter. a week later i asked him what we done for easter. my daughter was there with her boyfriend, and i didn’t remember any of it. thats why i asked for help. the fatigue was so bad and still is i have trouble just getting out of bed. some days i stay in bed allday and allnight. but the worset problem is my husband thinks you can get up and get over it. way harder than that. i just wish that all the pain was gone and emotionally like i used to be happy and out going. i’m now 38 and the dr.s just give me medicine for the pain and bipolar,insomnia when i can’t sleep and acid reflux meds. which none of them work, the slightist thing i do causes pain. my pain speciailist even said there is nothing else they can do for me except pills. which im imune to it all. this is the first time i sat down and told anyone other than dr.s. some of your shows really hit home. i thank god for you and your wife for opening comunication and being honest. so thanx for lending an ear. sincerly, Jeannie in Patrick Springs, VA

  17. connie says:

    Dr Phil I read Alexs story and it is sad that some of us suffer so much I have fibromyalgia and I am in pain alot I dont know the dease she has but i know it must be bad connie in wv

    phil

  18. jennifer b says:

    My prayers go out for them. Everyone who has it gets it so on. Its a very sad thing. If i had money i would. I can barley survive right now. But as soon as i am able to get a job i would love to help out with this! And any others. Is there any website also people can donate to?Is it just yalls im guessing the link you put on must be it!

    Im so glad that yall have helped as many people as yall can! :) I was crying on her story. I saw it! And so glad montel was there to help her to!! He is a wonderful man to! Thank god for yall you, robin, montel!

  19. Melinda says:

    Dear Phil & Robin
    I am 38 and diagnosed w/ idiopathic Torsion dystonia Last year. It is a progressive & dibiliatating neuorlogical movement disorder. I feel deeply for Alex and can definitley relate. One thing that bothered me about the show was the lack of informing her & the viewer’s of the possible side effects and dangers of (DBS). After all they are drilling holes in your head and messing with the brain. There are risk and the Dr.s made it sound like a cure and she would go back to the way she was before. When in fact they do not know that. I hope & pray she does. In some cases this has happened, some may have 50% improvement. But some have not. (DBS) is not a cure for dystonia There is no cure only medicines to help relieve symptoms. Even people w/ dystonia who have (DBS) and it has helped them if the battery dies or goes off unexpectedly their dystonia would act up again. I’m not trying to be negative. But the risks need to be addressed as well as the positives of the surgery. People who did watch the show who I know are like hey there’s a cure can you get the (DBS) surgery? It’s just not that simple. And even though I can’t drive, I can use cane for short distances my left foot is turned in and i drag my right leg. Have to use wheelchair for stores & such I am waiting for electric wheel chair. Because my arms & hands are affected as well. I have lack of cordination. I was extremely active person with a wonderful job, married for 20 yrs to a wonderful husband with 2 great children.I would not be wiling to take the risk of (DBS) at this time. I have a wonderful movement neurologist who has helped me with meds. and I get botox injections in left leg & arm every 3 months. My left foot is starting to improve and i don’t believe i would be able to use my left arm if it wasn’t for the botox. I too like many other people with dystonia went through cruel and awful experiences with dr’s before finding the right one. It amazes and saddens me the lack of Dr.s and people who have never even heard of dystonia. How can something so devastating be such a secret? I can’t work anymore but I have to do something. March 14 was my 1 yr w/ dystonia. I had to come to terms that the life i lived before was gone. Being diagnosed helped me move on. I am still the same person (I am now on a new path) I am getting involved w/ dystonia research foundation to bring awareness to dystonia. My old job does a wellness fair and they will let me set up a booth to bring awareness to dystonia. Plus it will help keep me conected w/ the many people I worked w/ for 11 yrs. (my second family) I am very slow but i am making recycled crafts to sell for dystonia research. Dystonia has taught me how much we take for granted. How kind & giving friends family, community & strangers can be. My hubby & I were overwhelmed by a benefit dinner our small town restaurant w/ help from family & local businesses donating things to raffle. My co-workers help. I got sick 3/14/09 my hubby lost job 7/13/09. The help of family friends, co-workers helped raise enough money for us to pay cobra insurance for months. People adopted our family for christmas people brought food & gifts. It was truly overwhelming. (It is much easier to give! Than to recieve). We pay it forward in small ways. But every little thing counts. Thank You Obahma! we would have never been able to pay cobra for insurance if he didn’t do the 35% subsidy. And we are also greatful that he extended it for 6 months. Wow! sorry to go on & on. I will continue to stay positive as long as I have my family, friends and a purpose. I am thinking positive and praying Alex will dance again.

  20. links says:

    Awesome Post…

    Saw this great post And just had to link back to it…

  21. vincent loh says:

    hi..i m inspired by alex story…n would like to know her story more..coz m thinking abt writing a book abt her..anyone know how can i contact her??anything as simple facebook acc will do..thanks

  22. Heather says:

    Hi there, I found out about Alex’s story through my aunt who watches your show all the time. It is so horrible with what is happening to you. I have been sick for about 9 months and recently got diagnosed with MS (multiple sclerosis). My case is mild compared to others but not to me. I feel sick to my stomach and dizzy all the time and very fatigued. I recently started taking some medication for the nausea and steroids in the begininng to reduce the swelling of the legions in my brain. I will be going to a neurologist hopefully soon to get the medicine i need to live a good and healthy happy life. Even though your situation and my situation is horrible, thank you so much for sharing. It is nice to know that there are people in the world that understand what you are going through in a physical sense and not just emotionally. if you need to talk or if anyone going through this, my email is hrowan85@yahoo.com. My aunt and I will be praying for you and everyone else as well. thanks again :)

  23. Jason says:

    My prayers go out for them. Everyone who has it gets it so on. Its a very sad thing. If i had money i would. I can barley survive right now. But as soon as i am able to get a job i would love to help out with this! And any others. Is there any website also people can donate to?Is it just yalls im guessing the link you put on must be it!

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