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Involuntary Movements Starting


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#1 Kristakj78

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Posted 11 July 2013 - 09:58 PM

I have been on Sinemet now for just under a year. I can't walk without it. I am nervous now though. I recently started realizing I'm getting involuntary movements or twitching in my left foot. I am going through a divorce, which some of you know was a long time coming. I have no real support from my mother, who claims no one will want to ever be with me due to the three kids and PD. I am currently in 25/100 of the Sinemet 4x a day, and am 35...not to sound compulsive, or put the cart ahead of the horse, but Im starting to worry about so much. I know I have finally made the right decision though regarding the divorce, and it is stamped and filed.

Edited by Kristakj78, 11 July 2013 - 10:00 PM.


#2 Prospector

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Posted 11 July 2013 - 10:10 PM

So sorry to hear about your divorce but it sounds like its a good thing. That being said I'm sure it's extremely stressful. I've been on sinemet 25/100 tid for about eight months and I get a little twitchy when stressed out. Hopefully these foot twitches are more related to the pressure you've been under. I know it's easier said than done but try to be kind to yourself. You are probably juggling alot of balls right now. Be like a duck and let that stressful stuff roll right off your back like water. Hope you feel better. Jeff
Dx Nov 2012 at 40

Meds: generic sinemet 25/100 x4 a day
Azilect 1 mg x1 a day

#3 Kristakj78

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Posted 11 July 2013 - 10:23 PM

Thanks for the kind words. Im praying it is just due to the stress, but I still worry. My biggest issue has been the rigidity or frozen paralyzed feeling. The Sinemet was a life saver, but I'ved always feared the side effects.

#4 chelle

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Posted 11 July 2013 - 10:49 PM

I always believed that there is really someone special for everyone. I would never believe that u finding someone else is hopeless bc there are amazing men out there that will take on anything. Dont give up on youself. Its not over till its over.

Just be the best u can be and it will all fall into place. I'll be praying for you.

#5 christie

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Posted 12 July 2013 - 04:49 AM

First thing first ! you look soooooooo great ! Love your new pic !!!! About time you start dating again..."my mother, who claims no one will want to ever be with me due to the three kids and PD"....Your mother is wrong on this, who said that mothers are always right? not me ! hahaha !

Levodopa-induced dyskinesias are inevitable. Sooner or later most-if not all-of us with young onset PD get them. But, not everyone develops severe disabling dyskinesias. Most of the times, or at least until late in the course of the disease, dyskinesias are mild, non-disabling, and contolled by medication adjustments. And even if/when dyskinesias get real bad, there is always the solution of DBS.

So try not to worry so much about dyskinesias. Focus on being functional and active throughtout the day, focus on your children and yourself.

Hope to see you soon in the "Parkinson's and dating" thread !!!

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#6 sessie

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Posted 12 July 2013 - 09:57 AM

There are definitely people who will date you AND love you AND your kids regardless of PD. Definitely a time not to listen to your mother!

Being divorced is hard, but being in an unhealthy marriage is a LOT worse. You can rock this.

I totally agree with what Christie says: "Focus on being functional and active throughout the day, focus on your children and yourself." :)

Good luck!

#7 Kristakj78

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Posted 12 July 2013 - 10:21 AM

Thanks sooo much for the positive words folks. Needed it. Things like this make an average person lose sleep, and the insomnia associated with the PD is a nightmare...esp when I try not to put the ac on due to anticipation of $ and the electric bill, and Im so hot and uncomfortable at night!!

#8 sarahjo

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Posted 12 July 2013 - 11:03 AM

Kristakj, here's a little tip about ac, if you have a fan (just an ordinary electric fan) turn it on, and right in front of the blower put a large bowl of ice water, this works as a swamp cooler, and face it right where you are, its amazing how well it works, now wont work to cool entire house but at least the area or small room where you are. and it's funny, I was just talking to my 23 year old daughter last night, she is in a relationship, and its kind of at a stand still she is ready to move forward he's dragging his feet, etc...... so she came to me, (I am so blessed, my children have always been my brightest spot, besides their father) I say that to say this, us mothers aren't in your hearts (dealing with emotions that are real to you) (I don't know your mother and to be honest I have met some I truly don't understand where they get their logic) but your emotions are real, and I had to explain to my daughter(who is dealing with hypoglycemic type symptoms (and now my issues,) (we are a very close family, so this pd is hard on all of us.) but this is my point, I listened to her feelings, shared some practical things to think about, and the said this, if you decide to keep moving forward with your relationship then I will support your decisions if you decide to end that my shoulder is here for you to cry on and we (dad and I) will not treat the young man any different, and we will help you move forward, (as mom I love my child with every ounce of my being, but also a bit of reality hits when you sit back and listen to the way they treat each other, (nothing physically or abusive, at this time but if its excepted now you always have the what if, but have also raised and are still raising our children that THEY are RESPONSIBLE for THEIR OWN ACTIONS AND DECISIONS. so they better think it all the way through.) I don't know your situation about your marriage, but you seem to be very intelligent, very beautiful, and you know deep in your heart your own mistakes as a wife and mother and really don't need others pointing them out, and there are so many shoulders on here to lean on, ( I mean from lawyers, to drs, to just us moms, wives, fathers, sisters, brothers, etc.) my husband tells me and my girls this statement, and I hope this helps "you wanna be treated like a queen then you act like a queen" another words, you hold the cards and you call the shots, now this doesn't give us ladies the right to be snobs and stuck ups but it does make you realize, we can control how ppl treat us, and we definitely control how we treat others, With all this said I as a mom will hold you up in prayer, (divorce no matter how good, bad or indifferent it is it's hard emotionally, physically, and spiritually on everyone involved. but you can learn from what went wrong and make your next marriage, (and there will me another) the best on the earth (at least for you),. take care of yourself and your health, we only get one life to get it right, and be happy you as a woman will survive, and come out better inside than you are now if you choose to, or you can become angry and every man alive, and be a hater (as my kids say). It's up to you not your mother. YOU CAN DO THIS, KEEP YOUR CHIN UP AND MOVE FORWARD. we choose how we react, treat, respond, and what we allow to help us grow and what we allow to stop us. Best of luck, my prayers are out to you. From what I read in your post, and see your face you will come out a winner. Bless you,,,,,

#9 Brad24

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Posted 12 July 2013 - 11:56 PM

I have been on Sinemet now for just under a year. I can't walk without it. I am nervous now though. I recently started realizing I'm getting involuntary movements or twitching in my left foot. I am going through a divorce, which some of you know was a long time coming. I have no real support from my mother, who claims no one will want to ever be with me due to the three kids and PD. I am currently in 25/100 of the Sinemet 4x a day, and am 35...not to sound compulsive, or put the cart ahead of the horse, but Im starting to worry about so much. I know I have finally made the right decision though regarding the divorce, and it is stamped and filed.

I always believed that there is really someone special for everyone. I would never believe that u finding someone else is hopeless bc there are amazing men out there that will take on anything. Dont give up on youself. Its not over till its over.

Just be the best u can be and it will all fall into place. I'll be praying for you.

First thing first ! you look soooooooo great ! Love your new pic !!!! About time you start dating again..."my mother, who claims no one will want to ever be with me due to the three kids and PD"....Your mother is wrong on this, who said that mothers are always right? not me ! hahaha !

Levodopa-induced dyskinesias are inevitable. Sooner or later most-if not all-of us with young onset PD get them. But, not everyone develops severe disabling dyskinesias. Most of the times, or at least until late in the course of the disease, dyskinesias are mild, non-disabling, and contolled by medication adjustments. And even if/when dyskinesias get real bad, there is always the solution of DBS.

So try not to worry so much about dyskinesias. Focus on being functional and active throughtout the day, focus on your children and yourself.

Hope to see you soon in the "Parkinson's and dating" thread !!!


Kristakj78, I think everyone of us with this disease puts the cart ahead of the horse. That's a natural thing from a responsible person. Which it appears you are. As far as what your mother claims B.S! Anyway, I talked to you before about a YOPD group starting. Meeting dates were decided to be the first wednesday of every month at 7PM, in the community room of the Hospital for Advanced Medicine at Geisinger. The room is booked for the next year. I can't take the credit for this it was done by a woman I met at a YOPD Seminar in , OH. She is from Lewisburg, PA. I plan on attending even though its quite a drive for me. I know it will be for you to because my daughter goes to Kutztown University and I drive her there all the time. Maybe this is something that will be of assistance to you. This forum is great but meeting people face to face is even better. I learned that at the seminar. I know with three kids its hard to do stuff. I have a 19, 14, 3 and 18 month old. Hopefully we will see you there.

Jeanette if you are reading this hopefully you can come too.

It seems we have lost the ability to send private messages on this site. Since I can't contact you guys that way and due to my job I do not want to post my personal info on a public forum.

P.S. : read Christie's Posts that girl knows her stuff!!
DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#10 christie

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Posted 13 July 2013 - 04:42 AM

It seems we have lost the ability to send private messages on this site. Since I can't contact you guys that way and due to my job I do not want to post my personal info on a public forum.


Brad, the ability to send private messages is not lost. You may have disabled-by mistake- your private messsaging system. Log in, go to your account and check to see if your private messenger is active. Bottom left, you should find the option in red-"disable messenger" (when the messaging system is active) or "enable (?) messenger" if the system is inactive. Or you may just need to empty your inbox. I tried to send you a PM too, and wondered why i couldn't...

Edited by christie, 13 July 2013 - 04:48 AM.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#11 KimAgain

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Posted 19 July 2013 - 07:46 AM

The loveliest involuntary movements of all are the "reaching out" gestures we make to our personal support groups--either in our homes, or here, in our extended "families." We may not all agree with your Mother's view of things kristak but, even misguided, I'm sure her opinion comes out of love. And... concurrently, a small measure of fear, perhaps? Either way, the nice thing about adulthood is that we do not have to take all advice given to us, even advice given by our Mothers!

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#12 coacht

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Posted 19 July 2013 - 09:45 AM

Kristakj, The involuntary movements are due to too much Sinemet usually from what I understand. Keep track of when the movements occur in relation to when you take your meds. Also, do the things they recommend, take sinemet without protein for so long before and after, drink plenty when you do, drink something acidic like orange juice if you have problems with it working as that helps it be absorbed. If you have problems consistently a half hour to an hour and a half after taking it then you probably are taking too high of a dose. You may have to split the pill and take it every 2 hours to even it out or something like that. Something to ask your doctor about.Coach T

#13 Sister411

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Posted 12 August 2013 - 09:23 AM

I'm starting to have the involuntary movements and pursing of lips. Neuro says its dyskenisia, so I'm rethinking so much Sinemet. My dr said we might revisit some other drugs that I tried in the beginning with other dr. So maybe check with your dr and see if there other drugs to try.
As far as divorce, don't look back. I divorced a horrid man 15 yrs ago and my daughter was talking to him on the phone yesterday and I heard his voice and it hit me, what if I was battling this disease and having to do it with him? OMG, I'd rather die. So stay with your gut feelings about why you got divorced because you are meant to find someone out there that will make battling this disease easier. I did, and I Thank God for him everyday.
"She is clothed in strength and dignity and she Laughs without fear of the future". Proverbs 31:25




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