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Survey: rigidity dominant vs tremor dominant


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#1 Elizabeth K.

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Posted 10 December 2012 - 06:27 PM

I've seen many posts talking about how people that are tremor dominant have a slower progression than people who are rigidity dominant. Does someone have a study to back that up? I want to make sure we aren't all just passing rumors around. Additionally, for the sake of curiosity, please post the following

- do you have a constant tremor?
- when were you diagnosed and do you feel you've progressed usually fast or slow?

My husband is 43 and was diagnosed 2 years ago. He has no tremor and deals with slowness and rigidity. It's too early for us to tell how fast he is progressing but we don't feel it's any quicker than normal

#2 Nospringsaussie

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Posted 10 December 2012 - 07:05 PM

Check out the Young Onsets webcast from this last month in Cincinnati. The presentation from Nina Browner, MD mentions it. I can't recall if it was in Q&A or during her main speech on meds. Either way the entire cast is worth listening to (as are many others). Here is a link: http://event.netbriefings.com/event/youngparkinsons/Archives/midwest201211/

I did have some other references but I can't find them right now. If I come across them I will post them (they were all in recent medical studies)
Cheers

#3 christie

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Posted 10 December 2012 - 07:17 PM

The improved prognosis associated with tremor dominant PD (as compared to akinetic rigid PD) is a well established fact.

According to the American Academy of Neurology : ""Older age of onset (variably defined as over age 57-78 years) (two Class II and one Class III studies) and rigidity/hypokinesia as a presenting symptom (two class II studies) are factors which are probably useful in predicting a more rapid rate of motor progression of PD".." Tremor as the initial presentation is a factor that is possibly useful in predicting slower progression and a longer response to levodopa therapy (one Class II and one Class III studies). http://www.aan.com/p...iagnosis_PD.pdf

Some of these data are included in the following studies :

-Ransmayr et al (J Neural Transm, 1986) : "Rigidity and akinesia are significantly positively correlated with the severity of motor dysability, stage of the disease, and brain atrophy, as is akinesia with a history of pharmacotoxic psychosis. Tremor is significantly negatively correlated with motor dysability, stage of the disease, and history of pharmacotoxic psychosis. Akinesia is correlated with visuomotor dysfunction (tested with Bender Gestalt Test) and rigidity with the depression score (Zung scale). The tremor type is favorable, the rigid-akinetic type unfavorable with respect to motor disability and psychosis" http://www.ncbi.nlm..../pubmed/3783147

-Eggers et al, Plos One 2012): "This study shows for the first time a considerable progression of clinical symptoms and in-vivo dopaminergic deficit of akinetic-rigid compared to tremordominant PD patients over time. Our data may help to improve strategic planning of further therapeutic trials and to provide a clearer prognosis for patients regarding the perspective of their disease" http://www.ncbi.nlm....pubmed/23056463

As for my history:
-My tremor is minimal. i have mostly rigidity. My (resting) tremor -and even more rarely postural tremor-is only occasionally present, trigerred by fatigue, pain, discomfort, and any stressful situation.
-According to my neuro my progression is NOT slow (whatever that means...LOL)

-English is not my first language !

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


#4 Nospringsaussie

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Posted 10 December 2012 - 08:46 PM

forgot to mention my background
- dominant symptoms are rigidity, akinesia, fatigue, pain. Very mild resting tremor when stressed.
- my 1st neuro (MDS at Cleveland Clinic) didn't want to reveal these important facts to us, I needed DBS within 3 years of Dx (my Dx was 2008). My whole family (incl me) thought I was on the bunny hill but I was on the triple black diamond slope. DBS has helped so much I can't even begin tell you (although I had to have the surgery twice plus one removal due to infection). Like Christie my current neuro says my progression is NOT slow and they are proactive on protecting my quality of life and have so far done a great job.
DON'T PANIC THOUGH, just because your husband didn't present with tremor isn't the be all and end all. The first 5 years post - Dx is the most critical to get and idea of how things will progress. The fact that he is Mr P90X and seems to have a good attitude (based on some of the posts I have read) and has changed his job to lower his stress all are good things . Make sure he is seeing the best possible MDS even if means traveling some way to get to them, even better if that neuro/MDS is in the same place as a research center focused on neuromodulation (DBS).

Edited by Nospringsaussie, 10 December 2012 - 08:47 PM.


#5 Elizabeth K.

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Posted 10 December 2012 - 09:14 PM

Thank you SO mich. i appreciate how esucated you guys are and all the info. Also, i appreciate the compassionate words, but I'm not worried about David. I mean, I care a great deal about our future but I can't drive myself crazy wondering what if anymore. I did that for 18 months and its no way to live. I know you understand. :)

Edited by Elizabeth K., 10 December 2012 - 09:33 PM.


#6 Elizabeth K.

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Posted 10 December 2012 - 09:37 PM

I think I'm going to start calling him Mr. P90x. Lol! It's quite possible he has a faster progression because he started on 2 25/100mg sinemet 4x a day and no one else in our YOPD group is on that much and they are up to 6 years farther along. Scary...

#7 christie

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Posted 10 December 2012 - 10:01 PM

I think I'm going to start calling him Mr. P90x. Lol! It's quite possible he has a faster progression because he started on 2 25/100mg sinemet 4x a day and no one else in our YOPD group is on that much and they are up to 6 years farther along. Scary...


There are other possible explanations for this (aside from fast progression rate of disease) :
1.Your husband might be OVER medicated. i clearly remember having read in the medical literature (yes,i am a medical literature freak!LOL) that when a patient with PD feels "normal" he is likely overmedicated, and should probably reduce his dosage. that was said by a famous MDS (can't recall his name, i could look it up Elizabeth, if you're interested)
2.Other patients with YOPD farther along in the disease who take much less levodopa might actually be undermedicated.
3.Everybody calculates the progression rate of symptoms from the day of diagnosis, assuming the patient is in the earliest stages when first diagnosed, but this is far from the rule. Your husband might have clinical PD for several years BEFORE his diagnosis.
This is particularly common for patients with akinetic rigid PD, because rigidity is not as obvious and as alarming as tremor, and most patients don't even realize the rigidity of their muscles (this is appreciated only by neuros as resistance to passive movement during clinical examination).

Another established fact is that most patients with YOPD have minimal or no tremor. Plus there are several other prognostic parameters-some known, others unknown-that may play a decisive role in the prognosis of each individual patient.

-English is not my first language !

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


#8 Brad24

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Posted 11 December 2012 - 06:48 AM

Elizabeth, I have heard and been told many things. My MDS has told me her opinions as far as rigidity vs tremor dominant symptoms. I also attended the young onset conference in cincinatti in November of this year. They had two neurologists speaking about several things. I can not remeber this issue coming up but it may have. The one who spoke listed above by-nospringsaussie did speak about medications. I recommend watching her webcast if you have time. The other neurologist who spoke is not on a webcast which is a shame because I thought he was really good. I am obviously not a doctor so I don't want to explain to you what I have heard and been told because I do not want to explain something improperly and worry you. My suggestion attend a young onset conference if you can and talk to the MDS you husband sees.

Edited by Brad24, 11 December 2012 - 06:57 AM.

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."

#9 cberns

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Posted 11 December 2012 - 11:02 AM

I don't know much about progression rate comparison of rigidity to tremor dominant but I do know that I have likely had PD for almost 6 years.

- do you have a constant tremor?
No, but my first symptom was tremoring index and pinky fingers on my left hand @ 31 years old.I could easily hide it though.

- when were you diagnosed and do you feel you've progressed usually fast or slow?
Diagnosed @ 34, in my opinion the progression is slow since I am only still slow on my left side solely. Still not taking Sinemet but have been close to asking my neuro for it.

I have read your husband's posts about giving the meds a chance and I do feel that his situation is very similar to mine. How long did David stay with the agonists before going to Sinemet or Stalevo.

#10 Elizabeth K.

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Posted 11 December 2012 - 12:20 PM

Cberns,

Not long at all. He was on it a year and went up to 4.5mg ER Mirapex. It helped his symptoms but only halfway know what I mean? Everything was only marginally improved and his quality of life suffered because of it. However, he probably would have stayed on it if the side effects hadn't been such a bother, and then getting off it was absolute hell. Sinemet ER was better and regular old Sinemet provided the greatest benefits with no side effects except dyskinesia.

#11 cberns

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Posted 11 December 2012 - 01:37 PM

Elizabeth - thanks for the info. I have been exercising like a fiend for over 3 years and used to be an athlete so working out was natural. I have been searching for the best meds to help my workouts and daily life run smoother since I have 2 young boys( ages 5 & 3) and rigidity can be an issue as of late. P90X is great but I am sure that he needed to Sinemet to get the most out of it?
Also, he preferred Sinemet over Stalevo? What kind of dyskinesia did he get?

#12 Elizabeth K.

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Posted 11 December 2012 - 09:47 PM

As he has never been unmedicated since diagnosis it is hard to have anything to compare it to, but I imagine the muscle cramping and slowness/uncoordination would make working out way harder. The amatadine hoed with fatigue, but he so made a career change that decreased his stress enormously and that helped his energy levels a lot. Still, some workouts are better than others depending on whether he is on or off. Mornings seem better than the end of the day.
His dyskinesia is in his head and right arm. Usually his arm waves back and forth at the forearm or wrist or both and if he tries to interlace his fingers to stop it his head nods instead.

#13 Elizabeth K.

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Posted 11 December 2012 - 09:48 PM

what is your experience with Stalevo? He has never tried it.

#14 DavidTX

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Posted 11 December 2012 - 10:01 PM

Thanks for all the great info (and the new nickname)! I actually have never tried stalevo, I take plain, generic carbidopa/levodopa. The dyskinesia I experience is a wagging right hand (I call it 'the evil hand') and sometimes my head will nod or wag side to side. I usually experience it near the end of my dose, but it can come any time. Personally, I feel like my progression went faster year one and has slowed a little in the second year (or maybe I'm just better medicated).

Great discussion!

Mr. P90X

#15 Brad24

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Posted 12 December 2012 - 05:09 AM

Mr P90X, I was prescribed carbidopa/levodopa immediately after DX. I take 1 25/100 3 times per day I also now take 8 mg of requip XL per day. I have some tremor in my left hand ( mostly resting ). I do have a lot of rigidity though. I noticed you said you have a wagging right hand. Do you have that all the time? The reason I ask is because I have what I would call a wagging left hand. I notice it when I walk or am on a stepper exercising.

Thanks,
Brad

Edited by Brad24, 12 December 2012 - 06:08 AM.


#16 cberns

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Posted 20 December 2012 - 06:24 PM

Elizabeth,

Sorry about the delay in responding. Being in CT with 2 young kids in elementary school has been crazy this week.

I don't know about Stalevo yet since my neuro put me on Neupro and it is helping as this point. We shall see.
He prefers Stalevo over Sinemet. Okun looks at it in reverse.
DavidTX(Mr P90X), how hard could you work out before Sinemet? How much does a good night's sleep help you.

I can tell you that today is a good day for me on Neupro patch 4mg - Mirapex was awful for me.

#17 DavidTX

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Posted 22 December 2012 - 09:15 PM

Cberns

I do notice that I can work out much harder since I started sinemet. And I also notice that my muscles fatigue and sometimes cramp more easily depending on the timing of my workout vs my dose--gotta have that dopamine. And i am definitely a different person depending on how much sleep I get. I fatigue more easily when my sleep is disturbed (which may sound self evident, but if you experience PD fatigue, you know what I mean). The thing is I sleep much more soundly since I got of mirapex.

Hope this helps. :)

#18 cberns

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Posted 26 January 2013 - 02:42 PM

Thanks for the feedback, it always helps to bounce info back and forth on these things.
Has Sinemet helped you walk better?




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