My Father's new diagnosis--It is NOT Parkinsons
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Posted by: luv2walk2 ®

09/09/2003, 16:49:34
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My father was just diagnosed with dystonia and Meige's. I immediately came out to these sites and the biggest light bulb went off.
My father was diagnosed with Parkinson's in 1995 after presenting with some slight hand and foot tremors but these repetitive facial issues where the muscles in his face ofetn "draw" and tighten. He had been put on Sinemet and Comtan several times a day and this has not done anything to help him.
We moved him 2 years ago back to PA so we can help him out. We got him a new Dr. here who was just following him so we tried another new neurologist. His facial issues keep getting worse and now he can not open his eyes. His doctor today (a relatively new one) diagnosed him with Dystonia and Meige's.
I am hoping that this is really the root of his problems and not the Parkinson's so we can better understand his issues and maybe get him some treatment plans tp better help him. He is soon to be 83 and really down. No, I am not thrilled this is what he has since it does not look like there are many options to help him, but maybe we can get him off the high dose Parkinson's meds. He is so tired all the time.
I would love to hear more about the disease.
Thank you all for being so open about your issues and things that have helped. I am hoping to find some natural products to help him.





Modified by luv2walk2 at Tue, Sep 09, 2003, 18:58:09

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Re: My Father's new diagnosis--It is NOT Parkinsons
Re: My Father's new diagnosis--It is NOT Parkinsons -- luv2walk2 Top of Thread Archive
Posted by: June in Toronto ®

09/10/2003, 17:27:01
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Dystonia comes in many forms - the eyelid(s) (Blepharospasm or Hemi-Facial Spasm), the face/mouth (Meige), the neck (Cervical Torticollis), the throat (Spasmodic Dysphonia), the hand (Writers Cramp) and Generalized Dystonia. If your father does indeed have a couple of forms of Dystonia then perhaps he can be helped now that he has been diagnosed correctly. The BEBRF and Dystonia Foundations have information on all these dystonias on their main pages. I wish you and your father the very best with all this.

June in Toronto







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Re: My Father's new diagnosis--It is NOT Parkinsons
Re: Re: My Father's new diagnosis--It is NOT Parkinsons -- June in Toronto Top of Thread Archive
Posted by: luv2walk2 ®

09/24/2003, 16:15:59
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thanks June.






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Re: My Father's new diagnosis--It is NOT Parkinsons
Re: Re: My Father's new diagnosis--It is NOT Parkinsons -- luv2walk2 Top of Thread Archive
Posted by: Claireroe ®

09/25/2003, 12:28:01
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..I have bleph/meige...plus generalised dystonia. I was tried on Madopar (similar to Sinemet). It made my Beb and meige much much worse,(apparently a side effect of a too high dose of Sinemet/Madopar is Blepharospam!..got that off the patient leaflet) and I was told that that was just part of the neurodegenrative disease that I had! However I started having bad headaches and producing breat-milk so I was advised to I stop taking it by my neuro to see what happened.I cut down slowly with my neuro's supervision. At first I got really bad worsening of all my symptoms including ever-shrinking handwriting. However, a year on and my Beb and all my other symptoms are so so much better,helped also by a high potassium diet as I had some muscle weakness from low Potassium levels that affected my eye muscles too.
Hope that things go well for you,
Claire





Modified by Claireroe at Thu, Sep 25, 2003, 13:40:38

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Re: potassium/ Claire
Re: Re: My Father's new diagnosis--It is NOT Parkinsons -- Claireroe Top of Thread Archive
Posted by: Kathy in Atlanta ®

09/27/2003, 09:08:02
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Claire, did you have to eat alot of bananas and did this help your muscle weaknes?






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Re: potassium/ Claire
Re: Re: potassium/ Claire -- Kathy in Atlanta Top of Thread Archive
Posted by: Claireroe ®

09/27/2003, 09:53:49
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..I HATE bananas..so no...but lots of dried Apricots and Dates..they have even more potassium in them. Also if I'm exercising I drink Isotonic sports drinks..(or if it's hot or I've been off colour). They have electrolytes in them and seem to help.This really has made a lot of difference. A couple of weeks ago i had some med (renal) tests and had to resume a "normal" diet. A lot of my symptoms came back including a worsening of my eye closures. So I guess increasinmg potassium "foods" is a harmless, but potentially life-changing thing to try.It has got rid of what me and my neuro thought was "Apraxia" altogether.
Good to hear from you again.
Claire






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Re: potassium/ Claire
Re: Re: potassium/ Claire -- Claireroe Top of Thread Archive
Posted by: Kathy in Atlanta ®

09/28/2003, 09:02:52
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Oh, i had forgotten about the apricots if i get tired of eating bananas! you no longer have apraxia?? that's good news.






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Re: potassium/ Claire
Re: Re: potassium/ Claire -- Kathy in Atlanta Top of Thread Archive
Posted by: Claireroe ®

09/27/2003, 09:54:33
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..I HATE bananas..so no...but lots of dried Apricots and Dates..they have even more potassium in them. Also if I'm exercising I drink Isotonic sports drinks..(or if it's hot or I've been off colour). They have electrolytes in them and seem to help.This really has made a lot of difference. A couple of weeks ago i had some med (renal) tests and had to resume a "normal" diet. A lot of my symptoms came back including a worsening of my eye closures. So I guess increasinmg potassium "foods" is a harmless, but potentially life-changing thing to try.It has got rid of what me and my neuro thought was "Apraxia" altogether.
Good to hear from you again.
Claire






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Re: My Father's new diagnosis--It is NOT Parkinsons
Re: My Father's new diagnosis--It is NOT Parkinsons -- luv2walk2 Top of Thread Archive
Posted by: Rita Molnar ®

09/11/2003, 00:10:42
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Sounds like a "good-news" - "bad-news" situation for your dad. But if his current diagnosis is correct, at least he now "knows the enemy", and there just might be some relief out there for him. The information on the BEBRF website is a good place to begin understanding what this thing is all about.

I recall that at the beginning, my symptoms were devastating to me, but they became more tolerable once I was diagnosed. And, my stress level dropped because I,at least, had a name for a condition which I'd been describing to countless doctors for over 10 years. Once I accepted this condition, I was able to become very focused on ways to help myself. It's been 3 years since my diagnosis. I have BEB and Meige--no other dystonias. I get Botox injections only for my BEB every 3 months, and they have had a dramatic effect for me. I also take Benadryl on a daily basis, and for some reason that I don't understand, it helps the Botox to relieve the eye-closing and muscle tightening. I can now function quite normally for 2-1/2 months out of every 3. I'm not perfect, but I'm doing OK.

Dystonias rob you of so much living, and, the constant struggle to steady the muscles in your face is so exhausting...no wonder your dad is "down". Give him a big BB hug for me, and tell him that I wish him well.

Rita in New Jersey







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Re: My Father's new diagnosis--It is NOT Parkinsons
Re: Re: My Father's new diagnosis--It is NOT Parkinsons -- Rita Molnar Top of Thread Archive
Posted by: luv2walk2 ®

09/24/2003, 16:15:24
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Thank you for your help. He wants to give up!! He wants to stop all his meds. The eye doctor just said he needs surgery on his eyelids to help his situation. We are taking him to a specialist. He is 83 and not real healthy.
He has had trouble swallowing for years and takes in very few fluids. He is dehydrated. (now we know why)
He has to have a cardiac workup ads his blood pressure is extremely low. What a nightmare.
His old doctors were giving him higher and higher doses of Sinemet and Comtan (enhancer) because his spasms kept getting worse. Ultimately we will have the neurologist help us sort this out.






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Re: My Father's new diagnosis--It is NOT Parkinsons
Re: Re: My Father's new diagnosis--It is NOT Parkinsons -- luv2walk2 Top of Thread Archive
Posted by: Rita Molnar ®

09/24/2003, 23:56:23
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I feel so bad for him. He must really be hurting if he's choosing to give up...sometimes things seem so hopeless. But please tell him I will pray he soon feels some relief, and that he can somehow see a brighter side to all this...

And I'll remember you in my prayers as well--that you can maybe find some words of comfort and hope for him, and, that you can maintain your own strength throughout this difficult time. I can tell that you love him very much...for that, he's a very fortunate man.







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Re: My Father's new diagnosis--It is NOT Parkinsons
Re: My Father's new diagnosis--It is NOT Parkinsons -- luv2walk2 Top of Thread Archive
Posted by: Kathy in Atlanta ®

09/27/2003, 09:13:36
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Perhaps if he was slowly weaned off of the meds he is taking and onto some of the ones that help dystonia and beb , he could find some relief. And could surgery be an option for him? i feel for you.






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