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progression while on meds.


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#1 sarahjo

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Posted 11 July 2013 - 12:50 PM

hey noticed something this morning at 330am I forgot the 9pm dosage of senimet and when I went to get up this morning to get my love off to work, I worse than when started meds, but this also helped me to see the importance of staying on med schedule. also noticed the other day, I had what I describe as a dry drunk. (as though I had way to much (way way way to much)to drink) stumbling, slurring speech, moving in slow motion, etc. is this normal progression or not. as I am writing this I am putting a call into my dr. to see what he has to say about it. I will keep you posted as if you have any suggestions please let me know. Bless you all and have an amazing day. sarahjo

#2 sessie

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Posted 12 July 2013 - 09:59 AM

I'm not sure if there is a "normal" progression, since PD can vary so much between individuals and everyone's symptoms change differently and at a different rate. But I would say that the symptoms you are describing are definitely PD symptoms (my partner has all of them at various times).

Sounds like your meds are working well, if you never notice those symptoms normally!!

#3 Donald Ennis

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Posted 12 July 2013 - 10:19 AM

Medication Vacation not fun not fun at all.

#4 sarahjo

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Posted 12 July 2013 - 11:30 AM

thanks sessie, I am under some other physical stress right now, as if you remember last month I asked about female cycling causing symptoms to worsen, and as dr. yesterday and he said definitely will change symptoms, and also he didn't want to change anything medication wise but said make note of what was happening and try to listen to my body and relax best I can during this time. now I went to dr. (fam. dr.) yesterday as well, and looks as if female issues are causing more problems so will have ultrasound next wed. to see what is happening and how to fix problems. ( I jokingly told my husband a few days ago, if I didn't know better I would sware that I was pregnant, (he got this blank pale look on his face,) told him its all his fault, and what would we do, and etc. ( remind you I am joking here) I said with my memory I would forget where I put the baby, so I would have to go by smell, oh wait that an't working well either, so I would have to listen for a cry or noise oh wait that an't working either, and I said I got it we will put a clap on clap off light on the child so we could find em, reason I am saying this is we gotta find humor in life,) seriously I don't think I am pregnant, just overian cyst and possibly fibroids on my uterus, but in the event I am we will love and cherish the precious gift of life, we are believers and don't think things are given by God in a mistake, they are given for one of a few reason, either to make us stronger, build our faith, or to help and strengthen others. and its all good, Don't like the cards sometimes and don't understand sometimes, but just accept them and pray you can do what we are suppose to do with them. Call me naïve, or whatever, but some ppl get angry and their dx of pd, and blame and try and point the finger, I have tried to figure out how I got this and honestly, come to conclusion does it really matter how I got it, its here and I can't change that, but I can only do the best I can do, and am finding that everyday is a new day, some days I am stronger than others, some days I am lazier than others, and you know what IT IS ALL OK, just can't stay there to long.. I read just recently on ones post (forgive me for forgetting who wrote it) go ahead and take time to think and figure and get angry, etc.... but have a plan to get out and move on. I loved that, cuz sometimes that what we need. no of us our perfect, but all have emotions and feelings about what is going on in our lives, and in the right spirit and motives we can help one another, as were normal ppl can't even begin to understand. Bless you alllllll have an amazing day.

#5 LarryH0123

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Posted 13 July 2013 - 09:12 AM

Well said sarahjo!

#6 sarahjo

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Posted 29 July 2013 - 01:14 PM

hey pd family, hope this note finds you all doing well, sorry I haven't been on been trying to get things done. LOL seriously, have been busy with the kids stuff, and we had vacation bible school at church, then left for a youth conference for three days, lets just say it is catching up with me, but I was wondering in the progression of things, today, I am feeling muscle cramping in my forearms, as though being squeezed and really heavy, how do you know if pd is progressing or just having a bad day...? thanks for the input.....

#7 Beau's Mom

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Posted 30 July 2013 - 11:48 AM

My former MDS once told me that even on meds, my PD is progressing every day. Sad, but true. Once I went through the grief process (denial, bargaining, anger, depression and finally acceptance, not necessarily in a linear fashion) over that single idea, I could more easily handle the emotions that came along with further progression and a long list of other losses.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#8 coacht

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Posted 30 July 2013 - 02:00 PM

Hello all, Speaking of progression, I noticed my wife's left arm, the one first affected often sticks out behind her with her palm pointed back often. I asked her if she is stiff and she said no and wondered why. that is all the more that was said since we cannot talk about PD. has anyone else experienced something like this.

#9 bjenczyk

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Posted 31 July 2013 - 06:35 AM

CoachT,

It's funny, but what you describe about your wife's left arm matches mine exactly. Sometimes I'll be walking along and realize that my left arm is sticking out, behind me, with the hand twisted around so that it is facing backwards. I wonder how that looks to people who don't know I have PD. I'm not sure if it's really noticeable, or if it just seems that way to me because I am so self-conscious about it.

I was diagnosed around 1.5 years ago at age 47, and I have definitely seen progression. I just had to increase my SInemet dose from 3 25/250 pills per day to 5 25/250 per day, because I was experiencing pretty significant off times around an hour before and after I would take a pill. It is incredibly frustrating not know what kind of progression to expect. I am a very active 48 YO male, and it feels like my PD is moving quickly. That is not a happy thought!

Dx'd 3/12 @ 48. Symptoms 7 years prior.
carbidopa/l dopa 25/250 6x daily, CR 2 pills at bedtime
No DaT scan, normal MRI. Dx'd by observation of neurologist,

Symptoms: left side rigidity when "off", sleep disruption, no sense of smell, minor fatigue, back pain

 

Still an optimist - what is wrong with me?


#10 Daven

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Posted 31 July 2013 - 08:53 AM

CoachT,

I don't walk like this all of the time but this has been part of my walking repertoire for years. The biggest difference between your wife and Bjenczyk is that I will grab my right arm with my left hand at the wrist behind my back. I don't even realize that I'm doing this. My latest thing is I that I find that I clench the fingers on my right hand in a twisted manner.

Dave

Edited by DaveN, 31 July 2013 - 08:54 AM.


#11 Donald Ennis

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Posted 31 July 2013 - 12:02 PM

My right arm just hangs at my side when I walk, it doesn't swing like the left, that is one of the first symptoms I noticed after the ever annoying and increasing tremors

#12 coacht

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Posted 31 July 2013 - 04:07 PM

Thanks for the replies. I don't even think she knows it is happening. She has also really started arching her eyebrows when she talks and it looks like she is angry, especially when she was holding her arm back like that. I am getting used to it now, but wonder what other people think or if they notice it. Also, is anyone else having trouble with the enter button to start a new line?

#13 Donald Ennis

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Posted 31 July 2013 - 05:39 PM

Also, is anyone else having trouble with the enter button to start a new line?

You have to fix the options on the editor for that one, I had that problem but damned if I remember what I did to fix it.

Great now I'm forgetting things too.

#14 chelle

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Posted 01 August 2013 - 07:18 AM

I have the problem with the enter button too. Only when I'm on my home computer. I forget things a lot.... like how to spell
( haha). Oh well what am I gonna do about it? Am I the only one who says Gonna? Just wondering if this is a southern thing.

I have where my toes curl and cramp but not my hands.

#15 coacht

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Posted 01 August 2013 - 07:59 AM

I searched and don't know what I did. I looked finally at the top of where I am posting and must have hit something. My text was extremely small. Now the enter button still doesn't work, nothing in the help section. Languages and style button is missing in my settings. They must have updated the program and it has some kinks in it yet. Coach T

#16 Donald Ennis

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Posted 01 August 2013 - 08:38 AM

Coach, try the Toggle Edit Mode, it is the first icon looks like a light switch.


#17 LarryH0123

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Posted 04 August 2013 - 06:01 AM

Aloha All,

My left arm tends to bend up slight lately and hang (if you want to call it that), closer to my body, while my hand contorts to some kind of claw looking posture. If I concentrate really hard I make it hang down like it used to and make it swing (forcefully) but only while I have full focus on it. Even then I can make it swing forwards but it seems very difficult for it to swing behind me.The Nordic walking sticks help with this.

I also notice that when my meds are first increased, the symptoms though still there are minimal and gradually do get worse. I have increased the Rotigotine from 4mg. to 6 and now 8. Each time symptoms lessen and then gradually get worse.

#18 tremblenurse

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Posted 04 August 2013 - 03:13 PM

I had what I describe as a dry drunk. (as though I had way to much (way way way to much)to drink) stumbling, slurring speech, moving in slow motion, etc.


Hi, and I have noticed this exact thing and coupled with my cognitive issues THAT was exactly how I described it, dry drunk....When I first went to the neurologist in January I had a couple of horrific days with alot of that. I was afraid of getting pulled over and was grateful to have my MRI in my car in case I needed to plead with a cop who might see me walking and getting into my car walking like that or to hear my slurred speech.

#19 sarahjo

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Posted 07 August 2013 - 12:23 PM

? for tremblenurse or any other women that this has happened too., when you were feeling the feeling of a dry drunk, were you cycling, ovulating, I know this is personal, but this happened again the other day, and dr. told me to pay attention and let him know when it was happening, and both times, it was during the ovulation time of the month, so wondering if this is a cause of a hormonal change in the body. and maybe meds aren't strong enough, or they are too strong at that time of the month. I will be cking for your answer. Bless you

#20 Daven

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Posted 07 August 2013 - 12:52 PM

Sarahjo, just wanted to let you know that I've had what you call a dry drunk. My voice is a little softer and I can't walk a straight line to save my life. Last I checked I don't do either of your questions :). I seem to be worse when I don't get a good nights sleep. My wife and I had a good laugh at my expense the other night on our walk, because to the casual observer, I looked like I was drunk. I definitely would have failed a field sobriety test.

Dave




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