just some personal thoughts

I just want to share my story. My SD started out of the blue almost 9 months ago. It seems like I just woke up and it started. Since then it's been a frustrating depression road for me. I'm a resident physician in family medicine, and I have to talk all day long. My fellow residents don't really know I have SD, most of them figure it's just a bad "cold". I can say one or two words fine, but when I have to say more words, that's when you can hear the strangling quality of it. I'm pretty much out of breath and exhausted when I have to talk. Some of them even make fun of me, and say "hey you should get one of those voice boxes" and started imitating a person using a voice box. Every single day, someone at the hospital says "what is worng with your voice?" And I'm usually too busy or tired to explain it. Oh yeah, like I was saying, I can say one or two words fine, so when I say "hi", people are like "hey your voice is back!" and then they go on. I've noticed how many people never actually listen to you when you're having a conversation. I've had many "conversations" where I was just nodding my head. Anyways, like many here, I've seen an ENT, 3 actually. The first one said I have SD and referred me to another ENT who actually said I had reflux and put me on prevacid (a proton pump inhibitor). That didn't really help. I saw another ENT who said the cause was psychogenic aphonia/dysphonia. I've talked with many other doctors since I'm in contact with them, one thinks it's allergies, someone else thinks its neurologic. I think it is neurologic, but I also recall that prior to this onset, was a period of heavy stress in my life as I was going through my intern year and experiencing family problems as well. I've had a CT scan of my head and neck which was negative. I haven't tried botox. I have to admit I'm pretty scared about the idea of it. But hey if it works I'm up for it. One other thought I've had is that lately, I've been doing this weird "pill rolling" motion with my fingers...which is a sign of Parkinson's. I don't know if I have Parkinson's but I have taken recreational ecstasy in my dumb youth and recent literature has associated it with Parkinson's in rats. Am I paying the price of my stupidity? I don't know, I"m sort of rambling. I am depressed but not suicidal. It's just so frustrating and I'm so close to quiting my residency because of it. I don't know how I've made it through the past 9 months. Well I don't know the point of this. Maybe to encourage others out there that you're not alone in the struggle. Maybe I'm trying to gain sympathy. I don't know. It has given me a better perspective on life. I mean, I could be much much worse off. There are far more deadly conditions. It's just tough as you all know. Alright I'll shuddup now. Thanks for reading.

Andy

Replies to this message

Re: just some personal thoughts
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Posted by: Narelle Lehane ^Ž

01/21/2003, 03:28:27

Hi Andy,

Know the feeling about misdiagnosis, I spent a few years on various benzos etc cause docs kept saying it was in my head. I wont say anything more here, may sound like mere platitudes, but if you want to talk more about it all (my onset was sudden too, and I was at Uni, only 17 when I got it and 34 now so have had a few more years to get on top of things) get in touch with me via e-mail: frogmob@ozemail.com.au or at Lehane.Narelle@saugov.sa.gov.au (more likely to get you there at work)

Sometimes nothing can be worse than not being able to communicate and feeling you may lose career/friends/purpose etc.

Get in touch if you feel like it.

Narelle

Australia

ADSD

PS Have a few notions re your rec drug query - some interesting research I have seen over the years if you're interested - but I personally don't believe that would be the "cause".

--modified by Narelle Lehane at Tue, Jan 21, 2003, 03:35:05

--modified by Narelle Lehane at Tue, Jan 21, 2003, 03:35:53

Re: just some personal thoughts
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Posted by: john s. beeman ^Ž

01/21/2003, 07:00:04

Dear Andy:

I must say as I read your missive, my heart ached for you. Know that the people who post on this BBS understand and really feel exactly what you feel. We've all been thru it and most are still going thru it - each and every day - some asking "Why me, God?" The good news is that humans are a resillent lot. We adjust, we cope, we survive. This condition certainly forces one to re-examine so many things. The good news? It's not in your head. You are not nuts. It is a real, neurologically based problem - that just happened - to you and to many of us. It is not your fault. Have faith. Adapt, adjust, survive. Keep the faith in yourself. John

Re: just some personal thoughts
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Posted by: Myra Barnes ^Ž

01/21/2003, 11:59:20

Hi Andy,

Everything you describe is so familiar. One thing you said struck me, though, as the reverse of what many of us oldtimers went through trying to get diagnosed. Your *first* ENT diagnosed you correctly, and then came the other doctors' guesses about allergies, etc., (usually including it's-all-in-your mind-go-see-a-shrink). Most of us traveled this route in reverse (often taking years) before finding an ENT or neurologist who recognized SD.

Eight years ago I was pretty much where you are now (I was a college professor), when I was finally diagnosed and offered Botox. I have to tell you that my first shot was like a miracle. Suddenly--and I mean like the next day--I could talk with no straining, no tremors, no spasms. Sure I was breathy and didn't have much volume, but it felt wonderful to be able to answer the phone or speak to a store clerk without sounding like I was strangling. It kept improving until I had a virtually normal voice for two to three months, until the old signs started coming back.

I'm almost ready for my 27th Botox shot, but I don't get depressed anymore when my voice is in the bad stage. I just get a little reclusive. You didn't say whether you're AD or AB, but Botox was a lifesaver for me. Please don't despair. This bb is full of people who have learned to live with SD and still have fun. Hang in there.

Myra AD/Texas

Re: just some personal thoughts
Re: Re: just some personal thoughts -- Myra Barnes		Top of Thread	Archive

Posted by: Myra Barnes ^Ž

01/21/2003, 12:17:20

A little P.S. I just remembered. After my first shot, the doctor had set an appointment for a follow up. He had videotaped me before the shot, and he was so surprised at the result that he called a television station and they sent a crew over. That evening on the 6:00 news, they showed before and after videos of me talking, then interviewed the doctor about spasmodic dysphonia. No one in the television crew had ever heard of it before, but one said his sister had similar symptoms but had been told it was probably an allergy. His sister called the doctor, was diagnosed with SD, and is one of his Botox patients now.

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Re: just some personal thoughts
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Posted by: Sharon Neupauer ^Ž

01/21/2003, 18:23:10

Hi Andy,

My heart really goes out to you. Please hang in there and don't make any quick moves concerning your residency because things will get better. My case of SD is relatively mild so I haven't had botox shots. My voice has drastically improved, but for me, lots of time was necessary (sorry to say). I personally think that stress is a factor, so anything that you can do to improve your emotional/spiritual state will help in the long run. I started with a speech therapist and we worked on relaxation techniques (nightly long baths, saunas etc.). I also found that a nutritious diet helped (saturated fats kill my voice - they seem to create spasm- along with coffee, and cold cuts and heavy red meats). I kept a mental note of everything that made my voice worse. And that awful feedback from other people, well, you can use it to your advantage to track how your voice does under certain circumstances. People really are only trying to be engaging, usually because they like you and it's their way of showing it. They don't realize the underlying impact that it has. I also went to a chiropractor for a few months, which helped a bit. And lately I've been taking lots and lots of coral calcium which is known for helping reduce spasms. It really seems to be helping and I'll know more in a few months. But so far, it's been a Godsend. For some people magnesium helps. Any nutrition you can get will probably help.

But again, it takes some time to kick in.

You'll just need to keep track of everything. I personally want to exhaust every natural method before doing anything invasive and it's really worked for me. My voice quality has improved 60% and I'm hoping that it will get even better with the coral calcium.

I'm sure that you'll find support along the way. Just know that there are many things that can help improve your situation. Hang in there. Read up on SD and learn as much as you can and experiment to find out what affects your voice and then experiment to find out what helps. You have all the necessary tools because you're in the medical field. Who knows, maybe someday you'll help find a cure!

Re: just some personal thoughts
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Posted by: Richard Callen ^Ž

01/21/2003, 21:30:31

Hi,

The symptons sound exactly like SD-Adductor type. You seem to have a neurological disease (SD-ADD). Pill-rolling is usually (as I know it) caused by taking (mostly 1st generation) "psychotropic" drugs, e.g., Thorazine, Mellaril, etc. Have you taken any of these drugs? Let us know. Good luck with your career. Maybe this will make a better doctor out of you. Who knows? It is hell.

Would you like to learn how to do cool formatting of these messages, like I do? Let me know.

Richard Callen SD-ADD

Re: just some personal thoughts
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Posted by: Douglas Whitley ^Ž

01/22/2003, 05:39:30

Andy,you need help.I'll be glad to talk.My e-mail is Whitley_Sherry@hotmail.com Send your phone # and I will call. My name is Douglas Whitley and I am an ER doc at Harris Hospital in Fort Worth,Texas.The key words are coping skills and you will need them big time.I have dystonia onset age 19 and am now 53y/o and coping with 3 forms of the disease including a probable variant of paroxysmal kinesiogenic dystonia,writers cramp onset 10 years ago and AD/SD gradual onset 5 years ago and diagnosed for sure 15 months ago.I have missed no work due to many positive factors in my life and the multitude of coping skills I have developed.Many of them came out of this web site.A starting place is to read extensively and get way up the curve on all the movement disorders.If your education is similar to mine you are in for a surprise at how skimpy your knowledge is at this point.I have looked back at my old notes and texts and little is said about dystonia but on the other hand that is changing with the current research efforts.I will write another message this afternoon further detailing my experience I have to go to work now.

Re: just some personal thoughts
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Posted by: Douglas Whitley ^Ž

01/22/2003, 20:42:57

Andy,Douglas Whitley back on line.Regarding coping skills I have the following suggestions.Go to the meeting in Washington,D.C.on March 8. Go at all cost.TO me the dystonia meeting in Miami was great for personal diagnosis/management purposes and the same will be true for you at the national SD conference.Take a medical leave if needed.The knowledge you gain will be of great value in dealing with your peers.My fellow physicians,nurses and ancillary personnel have been nothing but great.I have to feel the reasons are many but a lot has to do with my personal attitude which is straight forward,enthusiastic and knowledgeable.My voice and amplifier make me stand out it would seem but like anything new rapidly wears off and becomes the routine.There were the Brittany Spears comparisons which got a little repetitive.On the other hand the movement disorders are all around you.Two of my consultant physicians have Tourette's ,one has tremor and several have Parkinson's.The mother of a nurse has blepharospasm.I talked a short time with a patient about her restless legs(not the reason for her visit) and when walking out of the room my scribe[big time coping skill for my writer' cramp] stated she has that.It was undiagnosed.My subsequent discussion of the genetics of restless legs led her to diagnose it in 3 family members.At the last local dystonia support group meeting I gave a short talk on genetics of dystonia.This led one person to bring up some symptoms (very mild and to her up to that time unrelated )in her two children which have now been diagnosed as dystonia.Further discussion brought out that this family has 4 living generations of persons with dystonia and except for the index case were all undiagnosed.I am in the process of connecting them up with Susan Bressman at Beth Israel.They are working on finding the dystonia genes.Incidentally my family has also sent in blood since I have such an unusual symtom complex.They think I have a channelopathy

as the cause of my disease.AS far as patients are concerned Ihave had one refuse to see me due to my voice .Mostly it does not come up unless I bring it up.I often tell Parkinson's patients I have the opposite of their disease.They uniformly are positively influenced by this.Some of the teens ask where they could buy a speech amplifier for themselves like it is a new fashion.I tell myself every day I will take this disease any day over what I take care of every shift I work.Maybe that is why my patients so often do not care about my "minor " speech problem. Don't worry. You will develop your own coping style and hit the floor running.I DO AND I AM PROUD OF IT.A lot of the respect of my peers derives from this attitude.It also helps that I can kick all of their tails in 5K races.Hope to talk to you soon. Douglas Whitley M.D. AD/SD, writer's cramp and PKD

Re: just some personal thoughts
Re: Re: just some personal thoughts -- Douglas Whitley		Top of Thread	Archive

Posted by: sarah bayle ^Ž

01/23/2003, 01:39:00

wow, I'm so glad you responded to Andy. It seems so right to me that we not back out of the professional field we are in when we have a speech disorder. I am struggling through my own residency, of sorts, in student teaching.

How can we look others in the face; students, patients, or friends and suggests that they do their best if we are unwilling to do the same?

I am being trained to teach students with disabilities to find and make their own futures and I'll be damned if I don't do the same for myself.

Thanks for posting and reminding us that it happens to people from all walks of life.

Sarah Bayle

DITTO for Douglas's post
Re: Re: just some personal thoughts -- Douglas Whitley		Top of Thread	Archive

Posted by: Linda Spain ^Ž

01/23/2003, 11:30:25

Andy,

I'm going to omit details because my job is very different than yours. My work is in the corporate world. But, I will tell you that my experience, in general terms, is very much like Douglas's. (btw, I, too, often use an amplifier, but my navel is not pierced so I'm easy to distinguish from Brittany) It is reasonable to have a tough period while you adapt and adjust, but never give up and never lose your sense of humor! You can make it so that the only part of your life that is affected by SD is the sound of your voice. Nobody is perfect.

Best wishes,

Linda

--modified by Linda Spain at Thu, Jan 23, 2003, 14:37:01

--modified by Linda Spain at Thu, Jan 23, 2003, 15:06:45

Re: DITTO for Douglas's post
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Posted by: gary lea ^Ž

01/25/2003, 01:09:32

I have been deeply touched by the caring demonstrated in the above comments. I am a clinical psychologist in private practice; I had a very active practice and teaching career until 1992 when I was diagnosed with SD. My story is at buffalo-creek-press.com so will not elaborate here. I'm a psychologist yet I was told, by some, it's "all in your head". I know that it isn't true at this point, and with Neurontin and daily vocal exercise I am doing quite well and back doing lectures. Are things perfect or "easy"? - No, they aren't but there is reason to be hopeful. When it's pertinent I share my challenges with my patients, and it strengthens our working alliance. The disorder is extremely difficult, particularly at the beginning when the way is unclear and "everyone" is an expert and yet very very few have a clue what you are going through - except members of this BB I would suggest. But try not to despair. There is far more avilable now by way of good info and support than there was even 5 years ago, and we hope for continued progress in the years to come.

Gary Lea

Re: DITTO for Douglas's post
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Posted by: Ida Neary ^Ž

01/25/2003, 15:01:07

Linda, I love what you wrote:

You can make it so that the only part of your life that is affected by SD is the sound of your voice. Nobody is perfect.

Sometimes the disorder takes over my life and I feel that SD is all I am.

For some reason, reading your letter made me think of something I heard Ray Charles say many years ago. He said "The only bad thing about being blind is that I can't see."

Ida

AD/SD 25 years. Immune to Botox

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Re: just some personal thoughts
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Posted by: Richard Callen ^Ž

01/27/2003, 03:53:03

Hi Douglas,

What is channelopathy? See you in Washington. Please try not to be too annoying. Thanks.

Your (would-be) friend,

Richard Callen

Re: just some personal thoughts
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Posted by: Douglas Whitley ^Ž

01/27/2003, 13:35:28

Regarding channelopathies:Current genetic research in this area is absolutely fascinating.Many diseases are now known or thought to be secondary to defects in ion transport into the cell. These genetic variances in transport of Na,Cl,Mg,K,Ca and even iron are known to be the cause of cystic fibrosis(chloride),the periodic paralysis syndromes(potassium),hemiplegic migraine,certain forms of seizure and many others.A host of diseases are thought to be channelopathies including some of the dystonias and other movement disorders.For more detail I recommend going to www.google.com and search the term channelopathy.A good starting article is HHMI News.Douglas WhitleyM.D. AD/SD,writer'scramp,lightning cramps See you in Washington.

Huh?
Re: Re: just some personal thoughts -- Douglas Whitley		Top of Thread	Archive

Posted by: Richard Callen ^Ž

02/15/2003, 08:45:09

Hi,

I checked it out at Google. It all sounds hopeful, but I don't want to boggle my mind too much. Until these things can be sorted out and there is a cure for SD, I will sit around and relax. This situation/ability was hard paid for.

On Monday, March 10, I am leading a small group from the symposium to the NIH/NINDS "spamodic dysphonia unit" for a one hour guided tour of their facility. We will be pleased to have you, if you can come. You can ask about your lightning cramps. I never heard of this, but it sounds terrible. Is it painful? Arghhh.

Richard Callen, D.D.,Ph.D.,M.D.,S.D. (Note: first three degrees are self annointed.

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Re: just some personal thoughts
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Posted by: Kathy Pellette ^Ž

01/22/2003, 23:05:39

HEY THERE ANDY..IT'S BEEN REALLY ROUGH FOR YOU! I'M SORRY THIS IS HAPPENING AT SUCH A CRITICAL TIME IN YOUR LIFE. I HAVE DYSTONIA IN MY NECK WHICH STARTED OUT ABOUT 5 YRS. AGO AND GRADUALLY GOT REALLY BAD. AT FIRST MY NECK WOULD HAVE SOME SPASMS AND JERKS TO THE RIGHT. THE LOCAL DOC SAYS "YOU HAVE A MUSCLE SPASM AND I'LL GIVE YOU A MUSCLE RELAXANT AND TAKE XRAYS." HE DIDN'T HAVE A CLUE AS TO WHAT I HAD, I DON'T THINK HE KNEW TOO MUCH AT ALL ABOUT DYSTONIA.

ANYWAY,I DO KNOW THAT IN MY CASE, STRESS AND TENSION CAN SURELY MAKE THE CONDITION WORSE, I'M ON BOTOX AND OTHER MEDS AND RESULTS ..A 100% IMPROVEMT...(WELL, I CAN'T DRIVE NOR WORK YET SO, LET'S SAY 90%) SUCCESSFUL.

I HAVE NOT GONE THROUGH WHAT YOU ARE W/ YOUR VOICE,BUT I DO KNOW WHAT IT'S LIKE TO HAVE SOMETHING JUST OUT OF THE BLUE TURN UP AND NOT KNOWING WHAT IT IS. MY NECK AT IT'S WORST WAS IN A STUCK POSITION TURNED ALL THE WAY TO THE RIGHT ALL THE WAY ON MY SHOULDER. INDEED IT WAS EMBARRASSING TO ME EVEN THOUGH NO ONE ASKED ME WHAT WAS WRONG.

I'VE LEARNED THAT BOTOX DOESN'T WORK FOR SOME AND ALSO THAT NO MEDS FOR PAIN CAN WORK FOR SOME. I TAKE BOTOX ABOUT EVERY 3 MONTHS FROM A NEUROLOGIST. I JUST SIT IN A CHAIR AND 2 LITTLE ELECTRODES ARE PUT ON MY BACK WHICH ARE HOOKED UP TO A SMALL MACHINE MUCH LIKE A HI BLOOD PR. MACHINE. tHE MACHINE TELLS DR. HOW MUCH AND WHERE THE SPASMODIC STUFF IS GOING ON IN MY NECK. I GET QUITE A FEW SHOTS ALL OVER MY NECK AND EVERY NOW AND THEN I HAVE TO SAY OUCH. I'M USED TO THEM NOW. I KNOW WHAT A DIFFERENCE THEY MAKE FOR ME AND SO IT'S WORTH IT. THE WHOLE THING TAKES ABOUT 20 MINUTES. A DAY OR TWO AFTERWARD NECK MAY FEEL BRUISED OR TOUCHY, BUT OTHER THAN THAT I NEVER HAVE HAD ANY SIDE EFFECTS FROM IT. IT RELAXES MY NECK WHERE I CAN HAVE A STRAIGHT NECK. I HAVE NO MORE SPASMS OR JERKS, BUT I'M STILL NOT ABLE TO TURN MY HEAD MUCH TO THE LEFT. I DON'T HAVE A CAR NOW AND HAVEN'T WORKED IN ABOUT 4 YRS. i WAS ALREADY ON AN ANTI-DEPRESSANT LONG BEFORE THE DYSTONIA. yOU MAY WANT TO CHECK INTO GETTING SOME.

mEANWHILE, I SURELY HOPE THAT YOU DON'T QUIT ON YOUR RESIDENCY IF AT ALL POSSIBLE. I HOPE AND PRAY YOU WILL BE ABLE TO HAVE SUCCESS ALSO WITH BOTOX. DON'T GIVE UP!

Re: just some personal thoughts
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Posted by: a h ^Ž

01/25/2003, 13:28:03

I want to say thank-you all for your kindness. I'm speechless at the response. It means a lot.to me. I will heed your words of advice. May God bless you all.

Andy