Living Well with Dystonia - by Tom Seaman
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- เผยแพร่เมื่อ 27 ก.ค. 2024
- Presented by Tom Seaman, author of the book, Diagnosis Dystonia: Navigating the Journey, this program shares some of the many things he has learned in his almost 20 years of living with dystonia. It offers strategies for how to navigate the physical, emotional, and social challenges of life with dystonia, as well as other chronic health conditions. To learn more about Tom and his work as a patient advocate and life coach, and get a copy of his book, visit www.tomseamancoaching.com/, www.diagnosisdystonia.com/ or www.amazon.com/
This program was scheduled to be presented live by Tom in Calgary at the National Dystonia Symposium put on by the Dystonia Medical Research Foundation in Canada (DMRFC). However, Tom was not able to attend due to a hurricane, so the program was recorded.
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#selfcare #chronicpain #chronicillness #health #fitness #lifestyle #depression #anxiety #dystonia #hope #nevergiveup #wellness #nutrition #mindfulness
This disease took nearly 10 years from me I didn’t even know it had a label. Thanks for this content !
You're welcome and I am very sorry it took so long to find a proper diagnosis. That is sadly too common and needs to change. There is too much suffering being experienced by too many for too long. I hope you are getting help for it now.
Thank you Tom. Your story is very inspiring and giving hope.
Thanks to the internet I discovered my dystonia at an early stage.
I've been living with this for two years now.
In my case, despite this condition, I fought to make a dream of mine come true- to become a competetive sword fighter. And despite my pain and unvoluntarily turning head, I lately won a European championship, produced an artistic show, and teached kids juggling at school.
The thing that gives me power, despite the hurt from this condition, is knowing that pain has many forms and always around. But the choice of our role in this world, despite the pain, is still, up to us...and a day I made people smile and learn, is a good day- despite the difficulty.
I need to learn more how to self care, and today listening to you gave me more strength to continue.
Thanks a lot. I listened to the whole 2 hours and it really touched me.
Good luck with your journey, may you keep inspiring people to find the path for healing 🙏
Wow I love your attitude!!! Thank you for sharing so much of yourself. I think it will inspire others to still pursue a fulfilling life despite dystonia or any other health condition or challenge. Nothing stands in our way unless we let it...
@@TomSeamanCoaching Amen 🙏
After two years..I replay your video. My dystonia still with me, but I changed a lot.. your book and video give me lots of courage to in my life..thank you very much. Tom. By -live on the different side of earth ..
Thank you. That is such a nice message. I am very touched that I was able to help you! Please don't hesitate to contact me anytime if I can do anything at all.
@@TomSeamanCoaching If it is possible, your book about dystonia could translate to Chinese to let more people know these useful information. It will be good for more people in the world who is struggling in dystonia. Since my native language it's Chinese too, I can barely understand 70% the context of this book, Or because of the language barrier, I misunderstood the meaning of the book. This is a pity and frustration. But I’m glad it strengthened my reading ability..HAHA ^^
@@kana_leee Thank you an I am sorry about the book is only in English. The cost to translate it into all the different languages is expensive and not within my budget, but if you have any questions I am happy to help explain certain parts of it.
Thank you for sharing your experiences, Tom, and for all of the wonderful information ~ I now have hope.
You are an inspiration and a contribution to us all. Many Blessings to you!
Hope is a great thing to have! Thank you so much for sharing that with me. I am so happy to be able to provide information that is of help and quite humbled to be called an inspiration!
Thank you Tom for sharing. I absolutely love how you describe all aspects of the disorder. Most times I can’t put my symptoms into words but you’ve helped me with that🤗 I’m newly diagnosed with paroxysmal Dystonia and am struggling with getting any support. I live in Hawaii and so many doctors here aren’t educated on the topic. I’d be so grateful if you could offer any sort of assistance or advice. I feel myself slowly slipping away. My life now is virtually unrecognizable. It’s very depressing. However, your story gives me hope🙏🏽
Hi Krysty. I am so glad you found this helpful. I tried to cover as much as I could in the allotted time. I'm very sorry about your new diagnsosis. There is much to be learned and I encoruage you to get my book, "Diagnosis Dystonia: Navigating the Journey." It expands way beyong this video and can be an ongoing resource of information for not only dystonia, but depression, anxiety, loneliness, helpless feelings, etc., and strategies to work through them. It is on Amazon and my website which is www.diagnosisdystonia.com.
Thank you Tom. Finally able to listen to this thru my phone. Every neurologist should as well. So I will be throwing your name & work at my next Dr. appt. Stay safe. So similar. I was diagnosed at age 30. Coincidence?? Susan
HI Susan. I'm so glad you were able to watch the video! Thanks for letting your neurologist know about it. I think it would be of help for patients if more of what we experience on a daily basis was known by doctors because there is so much more to our lives than what we present at our short visits in their offices.
@@TomSeamanCoaching Who better, than all of us who suffer daily. Yes these drs., have amazing degrees & reputations, but they do not walk on glass each a.m. just trying to get to the bath room...Believe me, here in NH, I will pass the word. Stay safe. Susan
Great video, very helpful and detailed. Really appreciate you doing this it helped me greatly! Thanks for sharing your story
Thank you very much and so glad you found it helpful!
Thank you so much for your presentation Tom. You have definitely inspired me. Kind regards Susan. 😉
Thank you. That means a lot to me!
Thanks Tom...u r a torch bearer for my life!! Whatever u struggled in ur life...now I'm struggling the same!! Now onwards I'm fighting with enemies like anger and unnecessary fear...
Thanks Tom
Thank you for your comment and I am very sorry to hear that you are struggling so much. Please know that there is light at the end of the tunnel. Fear and anger worsen the symptoms and make that light seem more dim so please be careful how much you let those take you over. I have some strategies for dealing with anger and fear in my 2 books and blogs, so please check them out. They are all on my website at www.tomseaman.com.
Very insightful. Thanks for sharing
Thanks very much!
Enjoyed it Tom....my journey was similar..keep sharing!
I'm very glad to hear you enjoyed it. Thank you!
Great video Tom! Took me 20+ years for a diagnosis and probably 20+ Drs.
Thanks Shelly! I am so sorry it took you so long to get a diagnosis and so many doctors. Wow! I hope you have a good healthcare team now to help manage your symptoms.
Thank you. I'm now 64 years old but have had problems relating to Dystonia since my mid twenties. I have only just learned that I have Dystonia.
I am so sorry you have had to deal with this for so long not knowing what it was! I hope you are getting good treatments and help for it.
Thank you. This really helped me rethink how I live with generalized Dystonia 🙏🏼❤️
I am really glad to hear it was of help. Thank you for letting me know.
Ive been struggling with guilt and anxiety and been struggling with not wanting to be here. Im thankful i came across your videos tonight. The list of symptoms and things i deal arent aleays visible and I feel like I'm losing my family and been isolating. I need help when I can't stand asking for it. Show me parts of your story sounds so much like what I've been going through. I realized that I've been trying to find for so long just to be accepted still. My spirits exhasuted. I live day to day trying not to want to die. People don't understand that. I know ive been an inconvenience for too long at this poiint. Every sentence was a nod i could relate to. Ive been dealing with the super painful symptoms for 2 years. And I don't even want to go to drs. Don't like even trying to explain it because it's not like I got the energy or the words. Ty though. Im feel more understood and i feel some hoop, just know i need to get help shen typically just trying to get through the day. I feel so much shame and embarrassment. Definitely will make you want to isolate. Ty again. Just being able to be honest in this commeng section had helped. Typically I drew really try to be positive and not complain. To embracing the suck.
I am really sorry you have been having such a tough time with this, and I can relate to everything you said and are experiencing. It is no easy task by any means and if you ever need anyone to talk to when things get really rough, please contact me anytime. Also, if you are not a member of any support groups, I would encourage you to join. There are many one Facebook and perhaps some in your area you can meet people in person if that is something of interest. Many people are out there to led a helping hand so please don't give up.
Thank you, Tom.❤
I have myoclonus dystonia and cervical dystonia this is a great video I was diagnosed with genetics at 20 so I went 20yrs with no diagnosis
Thank you very much about the video . I am very sorry you went so long without a diagnosis. I wish the tide would turn and doctors became more knowledgeable about all movement disorders so this "take forever to get diagnosed" trend would end.
What is myoclonus dystonia?
Wow! My life and feelings verbatim!
Hello Tom: I am back. I know through your sharing & caring that you have always made me feel better dealing with issues of my generalized hereditary dystonia. DYT1 gene. I need your positive thoughts in all matters. In Dec. I turn 65. DBS on 7/1/2019. My personality changed & I have alienated all who loved me. Much depression even thou the surgery very much helped my physical issues. Your thoughts & guidance would be much appreciated...
Your story is almost identical to mine. Thank you for posting this video.
My pleasure. I hope you have been able to find ways to manage your symptoms.
Tom Seaman I was diagnosed in 2013. At first the botox worked and it was manageable. This last year it hasn't worked as well as it did in the beginning. It seems my head is pulling to the left almost constantly. I have to keep my hand up to my face to keep my head straight which gets very tiring and what I can do like grocery shop with both hands on the cart becomes difficult. I take CDB oil which seems to reduce anxiety and is helpful. I do hot and cold packs which manages the muscle strain. PT is too expensive. I'm thinking of doing the long distance program from STC. Can I ask how are you keeping the movement under control? Keeping your head straight? Thank you for all that you are doing to help people.
Hi Sheri- I have done so many things over the years to help me and it has changed from year to year based on my symptoms. Here is the list of things I have done. Some are treatments but most of it is lifestyle.... medications, nutrition, moderate exercise and stretching, topical lotions, GABA, ginger root, CBD oil, massage, Oska Pulse, acupuncture, trigger point tools, ice, heat, TENS unit, meditation, sleep and plenty of rest during the day, Laptop Laidback, healthy relationships, stress management, not being so hard on myself, saying “no” without guilt, confronting and overcoming anxiety and depression, finding meaningful activities, breathing and mindfulness activities, music, dancing, abdominal work, swimming, hobbies, taking on projects to feel a sense of accomplishment, relationships that make me laugh, and most importantly, how I think about things and process life events and releasing anger, resentment, shame, guilt, and other negative emotions. If you don't have my book, I hope you will get it. It has tons more info than is provided in this video.
Tom Seaman yes I have your book. I have a very good outlook on my life with dystonia but over time I’m finding it can wear one down. I run, yoga, web site design, and have a deeply held spiritual practices. I have found I’m more introverted and prefer one to one relationships rather then groups. I am not taking any medication and sometimes wonder if that would be helpful. Thank you for your responses.
I am so glad you have such a great attitude, but it can certainly be wearing for sure. I have improved a lot and still have days where it gets the better of me. That's great that you are able to be so active. Some people find those activities make their symptoms worse. My belief is that movement is the best thing for a movement disorder if we find the right movements for us, which can take some trial and error. I was also not one who wanted to take medications and fought it for a long time. But it got to be too painful so I had to begin taking something way back when. I was grateful for the relief. It helped me do more of the other treatment management and brain/motor control pattern training activities that are the foundation for my ongoing symptom management.
I was diagnosed with generalised myoclonus dystonia at 2 I am now 17 and I am still trying to accept myself as I am.
I'm very sorry. I can't imagine what it must be like to grow up with this condition.
I had cervical dystonia for more than 20 yrs.
Thank you so much. Great presentation. This should be on Dr. Oz and even Dr Phil. The reason Dr Phil could be interested is because he believes in tough love and now he has an injury and would possibly show how Doctors and family can destroy you.
I am really happy to hear you liked it. Thanks also about the comment regarding Dr. Oz and Dr. Phil. Those are 2 shows I would love to be on to talk about these things, as I think both, Dr. Phil probably more so, would appreciate this type of info and I think my new book that goes into so much of this on a broad basis for anyone with any kind of health or other challenge. If you have any inroads to either one, please let me know. Thanks!
Dr. Phil hasn’t had his degree since 80s bc he had a relationship with a patient. He exploits ppl for the world to see, seems to live shaming teeage girls and send troubled kids to places that have documents of abuse & even murder) but Dr.Phil replied he didn’t know, so he is sending kids with trauma to traumatize them more at farms/fasciitis & doesn’t know? He doesn’t follow up on them or generally make sure that what he is promoting is ethical…..he also loves to push an idea as if it’s proven true.
He’s a Fraud, have lost all respect
Question For Tom , I have been diagnosed with Cervical Dystonia seven years ago and have been getting steady Boxtox treatments since with little relief from extreme muscle pulling in the back and side of my neck, When I lay down the Dystonia goes away completely, I don't get a good answer from my Neurologist how the Dystonia can shut on and off by just laying down can you relate to this ? Thank you for sharing your video.
That’s a really good question and one that’s difficult to answer. A lot of people get relief from laying down. Then there are some people who have more symptoms when they lay down. This is just my anecdotal response to your question… The force of gravity on the body when we are laying down is significantly less than when we are sitting or standing. If we have a neck that is off center and twisting or turning or Imbalanced in anyway, as in the case of cervical dystonia, the rest of the body has to compensate and the more off balance we are in terms of our muscles, the greater the force of gravity and the more our compensatory muscles have to work to stabilize us. When we lay down, this force of gravity is reduced which reduces symptoms because the body is not fighting so hard to be upright.
Tom, I was just diagnosed with cervical dystonia, but I believe I have it all over my body. I have been chasing a diagnosis for 4 years. I have seen over 25 doctors and tried 74 plus medications. I am experiencing severe headaches, facial ,neck, back, abdominal pain, and more. Severe depression and anxiety. I am like you and Lau down almost all day. I live in a small town in arkansas, and unfortunately, there is really no one near me who knows anything about this. The neurologist I am seeing wants to try Botox. I have had it before for the headaches, but it really didn't work. Even fentenol doesn't help my pain. Is there any place you can recommend that specializes in this and is worth going to. If they just do bitox, I can get that done here , but I doubt it will help. I am at the end of my rope and in so much pain that I can't see how I can do this long term. Thank you for your help.
My family don't believe me. I'm in so much pain, my hole body is effected.. Take care. Thank you so much for your videos.
I am so sorry to hear that. I find it so hard to grasp why people won't believe us. What is there to believe? It is not a well known condition, but certainly a very well documented one.
I've had Charlie horses since childhood & as I've aged the cramping moved up.. also is it common to cramp or hurt more at night? I thought I could've had MS but my mri scan showed points of hypersensitivity.. I want to talk to my doctor about dystonia but I struggle to communicate and am so scared he'll just blow me off or think I'm paranoid. I was also born with scoliosis & hypermobility in my sacrum & I'm rather flexible and was always twisting my ankle or throwing my back out.. any tips on how to talk to my doctor?
These are all great questions but I am not qualified to answer. Your cramping symptoms at night could be from many things, even something like dehydration for example, so it is hard to answer with any certainty not knowing your medical history or lifestyle habits. I wish I could be of more help I think when you speak with your doctor, be armed with as much supporting information as possible about dystonia and other similar conditions so you can respond to their doubts or questions.
@@TomSeamanCoaching thank you 😊
I’m experiencing this now due to medication and had previous times but didn’t know what was it. I feel something similar to an invisible magnet pushing and pulling sideways in my mouth mainly my jaw to the preponderant side the neck is turning. A particular one is turning my neck to a particular side... when U give in it relaxes then the magnet comes back again.... it interchanges to the other side or others repeatedly when it’s bad. There’s also a feeling of being pulled at the top of my head or the other way as if heavy for a giant fishing rod and as if there was a giant magnet attracting my head in a invisible magnet or the opposite force of magnet repelling those. Or a feeling of pushing my head forward or backwards. My jaw and teeth hurts now as if this invisible magnet that is the same pole magnet was repelling it.
What you describe with the feelings of magnets is quite common with dystonia. Have you been diagnosed with dystonia? If not, please see a neurologist who specializes in movement disorders. Specifically ask about cervical dystonia, craniofacial dystonia, and oromandibular dystonia.
Does anyone know if there is an audiobook version of Diagnosing Dystonia?
Unfortunately I do not have an audiobook version. It is not in my budget. If you go to my website, many of my blogs have an audio - www.tomseaman.com
Thank you @@TomSeamanCoaching speedy response much appreciated 🙏
@@SilentBlueBird4 you’re welcome and I’m sorry that I do not have an audio version. If one ever becomes available I will be sure to let you know
Tom I'm a 32 year old mom of three with cervical dystonia I'm finding out that it is jaw related? Do u agree with this at all?
Yes, for some people, jaw problems are related to dystonia. Please read the section in my book about oral orthotics and Google "TMJ and Dystonia."
Sir help to my husband who is dygnoised by facial dystonia .he suffering from lot of pain in face n head.
I am very sorry about your husband. Dystonia of any kind can be so awful. If he has not already done so, I suggest he see a neurologist that specializes in movement disorders. They are typically called "movement disorder specialists."
With this dystonia what you do for living? Are you still working ?
I am a health and wellness life coach, helping people with dystonia and other health problems.
I have this tightness in my neck for 7 months straight, I don’t feel pain just tightness like hard muscles but my head does not move or have a weird position maybe its a spasm? Could it be dystonia?
I hope not, but anything is possible, as there are some people who have the symptoms you describe without any visual physical manifestation. A neurologist that specializes in movement disorders would be a good person to see.
@@TomSeamanCoaching it seems you don’t have visual manifestation so how do your spasms feel?
@@Roger-gi7kh It is difficult to see the physical manifestation of this condition in a lot of people. Especially in still photographs. As you can see in this program, there was a time when my neck was locked to the right with pretty severe contractions in my neck and shoulders. I still get them, but not as severe. When I have these spasms/contractions, they feel like somebody is squeezing my muscles or pulling me in a direction I don't want to go. Kind of like somebody has a rope tide around my head and is pulling me to one side or the other.
@@TomSeamanCoaching But why do I have to go to a movement specialist if I don't have involuntary movements or spasms?
@@Roger-gi7kh You don't have to go to a movement specialist. Anyone can help. They just tend to know more about movement disorders than other doctors.
There was a time i cant stand because my cervical or neck is very pain. I always laying in bed.
I’m very sorry to hear that. That sounds a lot like me. How are you doing now with your symptoms?
Hi, I am having drug induced cervical dystonia,any cure??
I am sorry to hear that. Drug induced dystonia is not uncommon. I am not a doctor, but please consider speaking with one who can help you stop taking it if you haven't already. There is not cure for dystonia, but a dystonic reaction to a drug or other substance can sometimes be prevented when changing meds.
Thank you for the response, Initially it was completely cured by doing pranayama and yoga, it is agian attacked after increase of stress levels in my work location.
Hey Tom, what are your thoughts on myoclonus?
Can you be a little bit more specific regarding myoclonus?
@@TomSeamanCoaching is it a form of dystonia?
And have you heard of this new emerging “functional dystonia” as a result of functional neurological disorder (conversion disorder) v true Dystonia?
@@headtrips1 There is a form of dystonia called myoclonus dystonia. Also, some people have symptoms of myoclonus that accompany other forms of dystonia or symptoms of dystonia. It gets kind of confusing. More confusing is functional neurological disorder. It is a real thing that does impact many people, but it is a diagnosis/condition that is hard to explain and understand. I have been to functional neurological support group meetings and online support groups and even people with functional disorders have a difficult time explaining it. Conversion disorder was the old name for functional neurological disorder.
@@TomSeamanCoaching have you seen that people with FND can also not look symptomatic at all, similar to true dystonia patients?
@@headtrips1 Yes, the symptoms are often very similar, but unlike a focal dystonia like cervical dystonia, for example, with FND you might see more issues with walking (gait), tremors (often in the hands), and tics similar to myoclonus.
I'd rather have a baby every day than going through this. I already have 3 children.
Yay neck botox tomorrow....shoot me. Good to find this channel.
And three years of it so need to uplift...maybe just commiserate
I hope all goes well at your appointment!