Go Back   NeuroTalk Support Groups > Health Conditions M - Z > Parkinson's Disease

Parkinson's Disease Tulip

Benign Tremulous Parkinsonism

Reply
Thread Tools Display Modes
Unread 09-27-2007, 05:21 PM   #1
indigogo
Senior Member
 
indigogo's Avatar
 
Join Date: Aug 2006
Location: "all the way over on the West Coast"
Posts: 1,032
Default Benign Tremulous Parkinsonism

I just returned home from an appointment with the neurologist (MDS) who treated me from 2000-2004; she's back at my clinic in the Seattle area after spending the last 3 years at the Cleveland Clinic. Based on her examination today, and after several years between examinations (she can see no change, or progression in my PD), and since I have been symptomatic for more than 10 years, she believes I have the syndrome that has recently been identified as "Benign Tremulous Parkinsonism."

I found this one research paper; I fit every category.

Anyone else find this to be familiar?

link to article, and text below:
http://archneur.ama-assn.org/cgi/con...3/3/354?ck=nck
----------------------------------------------
Benign Tremulous Parkinsonism

Keith A. Josephs, MST, MD; Joseph Y. Matsumoto, MD; J. Eric Ahlskog, MD, PhD

Arch Neurol. 2006;63:354-357.

ABSTRACT
Background Benign tremulous parkinsonism has never been precisely defined nor has the long-term course been studied.

Objective To report the clinical features and longitudinal course of patients with benign tremulous parkinsonism encountered in our movement disorders practice.

Design Computer search of medical records database.

Setting Mayo Clinic, Rochester, Minn.

Patients Of 116 patients identified, 16 (10 male and 6 female) had at least an 8-year history of this disease, had been examined by a senior movement disorders specialist, and had ultimately been diagnosed as having benign tremulous parkinsonism after an initial diagnosis of Parkinson disease (PD).

Interventions None.

Main Outcome Measures Age at onset of disease, response to levodopa therapy, tremor characteristics, and family history.

Results Mean disease duration was 11 years (range, 8-25 years) at last follow-up. Mean age at onset, 58.5 years, was younger than in most PD series, and most patients had a poor levodopa response (although levodopa trials were inadequate in some). A moderate to marked postural tremor was noted in 13 of the 16 patients, including 6 with a kinetic tremor. A family history of PD and/or tremor was reported in 10 (63%) of our patients. Three patients required thalamic deep brain surgery to treat their tremor.

Conclusions Benign tremulous parkinsonism may be a distinct clinical entity characterized by tremor predominance plus minimal progression of other aspects of parkinsonism. The tremor is often not very responsive to levodopa therapy. In this series, most patients had immediate family members with a diagnosis of tremor or PD.

INTRODUCTION

In our routine movement disorders clinical practice, we have occasionally encountered patients with features similar to classic idiopathic Parkinson disease (PD) yet with a unique clinical course. These patients fulfill minimum criteria for PD with resting tremor plus other parkinsonian signs, without evidence of ataxia, corticospinal signs, apraxia, cognitive impairment, or prominent early dysautonomia. What has distinguished them has been a consistent constellation of clinical features: (1) prominent resting tremor that is the first or among the first signs and that persistently overshadows other aspects of parkinsonism throughout the course; (2) nontremor components of parkinsonism that remain mild; (3) absence of gait disorder apart from reduced arm swing or mild stooping; (4) no more than mild progression, except for tremor, despite at least 8 years of parkinsonism; and (5) absence of disability apart from tremor. We have also noted that the tremor is typically refractory to medications, including maximally tolerated levodopa. Furthermore, most cases also display a prominent action tremor that impairs eating and writing. Limited reports have alluded to such cases as "benign tremulous PD" or "benign tremulous parkinsonism."1-2 However, previous series have not precisely defined the clinical criteria nor has there been follow-up beyond a few years of parkinsonism, except in rare cases.

We report on a series of patients with benign tremulous parkinsonism to better define the characteristics and describe the long-term outcomes.

METHODS
We identified 116 cases from a retrospective computer search of the medical records database of the Mayo Clinic, Rochester, Minn, spanning a single decade (January 1, 1994, through December 31, 2004), using the text word search terms benign tremulous parkinsonism, benign tremulous Parkinson's disease, tremor predominant parkinsonism, or tremor predominant Parkinson's disease. The medical records of all 116 cases were reviewed to exclude any case that, by the time of last evaluation, had not had at least an 8-year history of parkinsonism. Only cases evaluated and diagnosed by a senior movement disorders specialist (J.E.A. or J.Y.M.) were included.

RESULTS

INITIAL SYMPTOMS AND PRESENTATION
In all but 1 patient the initial symptom was a resting hand tremor; this was unilateral in 13 (confined to the thumb in 1) and bilateral in 2. One patient initially noted a resting foot tremor. At the time of first evaluation, only 2 patients were receiving levodopa treatment, while 10 patients were not using any medication for tremor or PD. The initial examination showed a resting hand tremor in all patients, which was moderate or severe in 12, including the 2 patients taking levodopa. All but 1 patient had rigidity, bradykinetic alternating motor rates, or both at this first examination. All had a normal gait with the exception of reduced arm swing in 14 patients, which was unilateral in 5, and a stooped posture in 3 patients. Patient 16 also had a hypokinetic dysarthria. A postural tremor was present in 13 patients, which persisted yet was attenuated with visually guided movements toward a target in 7. None reported tremor response to alcohol.

CLINICAL FINDINGS PRESENT AT LAST FOLLOW-UP
The mean follow-up from onset of parkinsonism to time of the last movement disorder evaluation was 11.1 years (range, 8-25 years). Four patients had had more than 12 years of symptoms. In all patients, the symptoms remained relatively unchanged compared with the initial examination with the exception of the resting tremor, which worsened in 6 patients. In patient 3 the bradykinesia and rigidity were mildly improved, which may have resulted from levodopa treatment, as this patient was taking the highest levodopa dose in this group (1200 mg). The gait and balance remained unimpaired.
Severity of the postural tremor almost mirrored severity of the rest component (Table 3). With visually guided movement toward a target, a kinetic tremor was also present in 7 patients. A resting chin tremor was noted in 7 patients. Additional symptoms and signs of PD, identified in 8 patients, were mild and included stooped posture, seborrhea, difficulty with fine motor tasks, difficulty turning in bed, sialorrhea, and decreased facial expression.

RESPONSE TO TREATMENT
Levodopa therapy was not consistently effective in treating the resting tremor or improving other aspects of parkinsonism. Levodopa therapy provided no benefit in 9 of the cases, although only 3 were treated with doses of at least 600 mg daily during the disease course. It provided partial benefit in 3 patients and moderate benefit in 1 (patient 3). The remaining 3 patients received only a single dose of levodopa. Only 2 patients developed levodopa dyskinesias, slight in both; these included facial dyskinesias in one and arm posturing in the other. At the time of last examination, 6 patients were receiving levodopa therapy.

The tremor was severe enough that 3 patients underwent thalamic deep brain surgery. All 3 patients were tremor free 1 month after surgery; however, the tremor returned in 1 patient after 1 month. One patient was lost to follow-up 1 month after surgery. The third patient (patient 13) had significant improvement of the action tremor up to 3 years after surgery with continued reprogramming of the stimulator, yet he had persistence and progression of the resting tremor, which became bilateral.

FAMILY HISTORIES
The family histories were remarkable, with 10 of the 16 patients reporting tremor or PD in at least 1 immediate family member. This included PD in the immediate family in 4 patients, tremor in 5, and both PD and tremor in 1. More than 1 immediate family member was affected in 6 cases (2 cases with PD in both 1 sibling and 1 parent; 4 cases with tremor in 2-4 immediate relatives). None of the family members was examined to confirm these observations.

OTHER FINDINGS
Dysautonomia, by report, was minimal to absent, with constipation recorded in 3 patients, erectile dysfunction in 2, and bladder dysfunction in 1. No patients developed cognitive impairment.

COMMENT
Following the lead of other authors, we have been recognizing patients with benign tremulous parkinsonism during the past 12 years.1 Although this syndrome does not appear to be rare, we are aware of no reports that have defined the clinical criteria or the long-term course for this diagnosis. We therefore report on our 16 patients with this diagnosis, who had symptoms for at least 8 years, to help better define consistent features and outcomes. We discourage the reader from trying to infer any prevalence data from this article.

When patients were initially examined early in the course of the disease, the clinical picture was consistent with PD,4 and that was typically the initial diagnosis. Subtle clues suggesting benign tremulous parkinsonism were a predominance of resting tremor and prominent postural-action tremor (in almost all cases), with other signs of PD being present but very mild. Benign tremulous parkinsonism became more apparent, however, after several years when the tremor remained the primary problem, with minimal progression of other aspects of parkinsonism. Also suggesting this condition was the absence of a satisfactory response to levodopa therapy in most patients in whom it was administered. This condition was clearly recognizable after many years (we arbitrarily selected >8 years), by which time patients with typical PD are experiencing myriad problems, including gait difficulties, which our patients were spared. Moreover, substantial levodopa complications were not part of the clinical picture. A significant number of the patients also reported a family history of tremor and/or PD, which may be a clue to the diagnosis of benign tremulous parkinsonism if confirmed in other series.

Neurodegenerative diseases are heterogeneous and display a variety of rates of progression. Could this simply represent one end of the bell-shaped curve of typical PD? Although we have no current means to be certain, as we did not have data from pathological studies, the near absence of progression apart from tremor and inconsistent response to levodopa therapy suggest that benign tremulous parkinsonism may represent a unique disorder.

The benign tremulous parkinsonism syndrome must be differentiated from other somewhat similar yet distinct tremor syndromes. The monosymptomatic resting tremor is defined by a pure or predominant resting tremor without signs of bradykinesia, rigidity, or problems with stance stability sufficient to be diagnosed as PD.5 The combined resting-postural tremor syndrome described by Koller and Rubino6 and essential tremor with isolated resting tremor7 are also different, as these syndromes are not associated with PD signs apart from resting tremor. Isolated tremor with very mild parkinsonian signs related to aging8 is a somewhat nonspecific syndrome but also differs from the disorder in our patients, as the mean age at onset of our cohort was only 58 years. Parkinson disease initially manifesting as essential tremor9-10 is defined by initial presentation with a postural tremor or head tremor, with the subsequent development of signs and symptoms consistent with PD. In none of our patients did postural tremor predate resting tremor. Combined essential tremor with PD11 is unlikely because of the lack of progression of parkinsonism. "Tremor-predominant PD"12 is a very broad category that, as originally defined, required only tremor greater than gait-posture deficits. Thus, in the article by Jankovic et al,12 more than half of the DATATOP (Deprenyl and Tocopherol Antioxidative Therapy of Parkinsonism) cohort of 800 patients fit the criteria for tremor-predominant PD.

A striking finding in our cases was the family history. An immediate family member with either tremor or PD was reported by 10 (63%) of our 16 patients, including 5 (31%) with PD. This contrasts with recent epidemiologic studies in which approximately 10% to 16% of patients with classic PD reported a history of PD in an immediate family member.13-15 Similarly, a family history of essential tremor has been reported to occur in 3% to 17% of patients with PD,16-17 contrasting with 38% in our cohort. This raises speculation that this disorder might have more substantial genetic underpinnings than typical PD.

The neuropathology of benign tremulous parkinsonism, and specifically whether it is similar to classic PD, is unknown. Previous striatal dopaminergic imaging studies, however, have identified reduced uptake, typical of PD in patients with this phenotype.1-2 Despite this similarity, identification of these patients in clinical neuroprotective therapy trials may be important, since disproportionate distribution of these patients in treatment groups will distort the outcomes.

The term benign tremulous parkinsonism, as originally used, highlights the course of the syndrome and is not necessarily inappropriate. However, the tremor can be very disabling, such that 3 of our patients opted for surgical intervention for their tremor.

AUTHOR INFORMATION
Correspondence: Keith A. Josephs, MST, MD, Department of Neurology, Mayo Clinic, Rochester, MN 55902 (josephs.keith@mayo.edu ).
Accepted for Publication: June 24, 2005.
Author Contributions: Study concept and design: Josephs and Ahlskog. Acquisition of data: Josephs, Matsumoto, and Ahlskog. Analysis and interpretation of data: Josephs and Ahlskog. Drafting of the manuscript: Josephs and Ahlskog. Critical revision of the manuscript for important intellectual content: Matsumoto and Ahlskog. Administrative, technical, and material support: Josephs. Study supervision: Matsumoto.
Funding/Support: This study was supported by grant P01 NS40256-06 from the National Institute of Neurological Disorders and Stroke, Bethesda, Md.
Author Affiliations: Division of Movement Disorders, Department of Neurology, Mayo Clinic, Rochester, Minn.

REFERENCES
1. Brooks DJ, Playford ED, Ibanez V, et al. Isolated tremor and disruption of the nigrostriatal dopaminergic system: an 18F-dopa PET study. Neurology. 1992;42:1554-1560. FREE FULL TEXT

2. Marshall V, Grosset DG. Role of dopamine transporter imaging in the diagnosis of atypical tremor disorders. Mov Disord. 2003;18:S22-S27. PUBMED

3. Department of Neurology. Mayo Clinic. Clinical Examinations in Neurology. St Louis, Mo: CV Mosby Co; 1998.

4. Hughes AJ, Daniel SE, Blankson S. A clinicopathological study of 100 cases of Parkinson's disease. Arch Neurol. 1993;50:140-148. ABSTRACT

5. Deuschl G, Bain P, Brin M, Ad Hoc Scientific Committee. Consensus statement of the Movement Disorder Society on Tremor. Mov Disord. 1998;13(suppl 3):2-23. PUBMED

6. Koller WC, Rubino FA. Combined resting-postural tremors. Arch Neurol. 1985;42:683-684. ABSTRACT

7. Louis ED, Jurewicz EC. Olfaction in essential tremor patients with and without isolated rest tremor. Mov Disord. 2003;18:1387-1389. FULL TEXT | ISI | PUBMED

8. Lee MS, Kim YD, Im JH, Kim HJ, Rinne JO, Bhatia KP. 123I-IPT brain SPECT study in essential tremor and Parkinson's disease. Neurology. 1999;52:1422-1426. FREE FULL TEXT

9. Chaudhuri KR, Buxton-Thomas M, Dhawan V, Peng R, Meilak C, Brooks DJ. Long duration asymmetrical postural tremor is likely to predict development of Parkinson's disease and not essential tremor: clinical follow up study of 13 cases. J Neurol Neurosurg Psychiatry. 2005;76:115-117. FREE FULL TEXT

10. Geraghty JJ, Jankovic J, Zetusky WJ. Association between essential tremor and Parkinson's disease. Ann Neurol. 1985;17:329-333. FULL TEXT | ISI | PUBMED

11. Lance JW, Schwab RS, Petersen EA. Action tremor and the cogwheel phenomenon in Parkinson's disease. Brain. 1963;86:95-110. FREE FULL TEXT

12. Jankovic J, McDermott M, Carter J, et al. Variable expression of Parkinson's disease: a base-line analysis of the DATATOP cohort. Neurology. 1990;40:1529-1534. FREE FULL TEXT

13. Payami H, Larsen K, Bernard S, Nutt J. Increased risk of Parkinson's disease in parents and siblings of patients. Ann Neurol. 1994;36:659-661. FULL TEXT | ISI | PUBMED

14. Rocca WA, McDonnell SK, Strain KJ, et al. Familial aggregation of Parkinson's disease: the Mayo Clinic family study. Ann Neurol. 2004;56:495-502. FULL TEXT | ISI | PUBMED

15. Elbaz A, Grigoletto F, Baldereschi M, et al, EUROPARKINSON Study Group. Familial aggregation of Parkinson's disease: a population-based case-control study in Europe. Neurology. 1999;52:1876-1882. FREE FULL TEXT

16. Lang AE, Kierans C, Blair RD. Association between familial tremor and Parkinson's disease. Ann Neurol. 1986;19:306-307. ISI | PUBMED

17. Cleeves L, Findley LJ, Koller W. Lack of association between essential tremor and Parkinson's disease: lack of association between essential tremor and Parkinson's disease. Ann Neurol. 1988;24:23-26. FULL TEXT | ISI | PUBMED
__________________
Carey

“Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony
indigogo is offline   Reply With Quote
"Thanks for this!" says:
imark3000 (06-30-2010)
Unread 09-27-2007, 06:42 PM   #2
KC Tower
Junior Member
 
Join Date: Sep 2006
Location: Burnaby, B.C. Canada
Posts: 70
Confused Familiar --But ....

Quote:
Originally Posted by indigogo View Post
Anyone else find this to be familiar?
Seems quite familiar - will have to read for the third or fourth time

After 4.75 years with primarily a tremor but no meds and being on an upswing lately I am not contemplating taking anything in the near future.

Names for my version of PD are nice but really doesn't have any meaning unless it means different treatment or the not very likely fix.

Interesting and please post if you find more.

thanks Carey ,,,,, ken
KC Tower is offline   Reply With Quote
Unread 09-27-2007, 08:08 PM   #3
jeanb
Senior Member
 
jeanb's Avatar
 
Join Date: Aug 2006
Location: sonoran desert
Posts: 1,352
Wink wow

Carey,

I don't think I fit the profile (I wish I did ...) , but this is very good news for many who do -- you included of course.

There is always something new to learn about this disease, isn't there?

Good luck to you and all.
__________________
Jean B

This isn't the life I wished for, but it is the life I have. So I'm doing my best.
jeanb is offline   Reply With Quote
Unread 09-28-2007, 06:39 AM   #4
Stitcher
Magnate
 
Stitcher's Avatar
 
Join Date: Aug 2006
Posts: 2,136
My Mood:
Default

Carey, so how do you feel about this change in dx?

__________________
You're alive. Do something. The directive in life, the moral imperative was so uncomplicated. It could be expressed in single words, not complete sentences. It sounded like this: Look. Listen. Choose. Act. ~~Barbara Hall

I long to accomplish a great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker. ~~Helen Keller
Stitcher is offline   Reply With Quote
Unread 09-28-2007, 06:52 AM   #5
EnglishCountryDancer
Member
 
Join Date: Sep 2006
Location: Devon,England
Posts: 260
Default Change

I am not sure whether it should be regarded as a change in diagnosis.Surely it is just one of the many ways P.D can present itself.
EnglishCountryDancer is offline   Reply With Quote
Unread 09-28-2007, 01:06 PM   #6
indigogo
Senior Member
 
indigogo's Avatar
 
Join Date: Aug 2006
Location: "all the way over on the West Coast"
Posts: 1,032
Default a long and detailed response

ECD – you are correct; it is still Parkinson’s – it now has a more precise definition and potential prognosis for me. I believe it is one of many distinct variations of PD that currently lie within the term “Parkinson’s.” Many researchers and clinicians are beginning to view PD as a syndrome, or a collection of syndromes, rather than a disease.

Carolyn - to be clear, my doctor’s conclusion was not pronounced in a grand way, nor as saying that I no longer have PD. It came after I had been examined, and as a result of an extended discussion we had about my activities as a patient advocate for the Parkinson’s Action Network and the Parkinson’s Disease Foundation, and how that dovetailed with the clinical work she has been doing, and the conclusions she has reached since leaving Seattle several years ago. She firmly believes PD is a collection of syndromes, and that the only way patients can be treated effectively is if each person who walks through her door is seen as an individual, completely free of any pre-packaged version of Parkinson’s. She also is a strong promoter and practitioner of the team approach to PD care. (See her article in this summer’s issue of the PDF newsletter http://www.pdf.org/Publications/news...m_approach.cfm)

In our conversation I confessed that I had expected to be dead, or at least very physically disabled, eight years after diagnosis. I told her I had never imagined life after my daughter left for college (which she did just last week), that I had been unable to plan anything in the future. But, here I was, feeling better than I had felt in a long time. Where was the dyskinesia? Why did I not experience on/offs? How come my voice was still strong, my gait even, my balance intact, my movement unfrozen? When would the other shoe drop?

She replied that maybe, in fact probably, it never would. She had the benefit of not seeing me as a patient for several years; she could see little if any change in how I look and behave. I had history on my side – eight official years of little to no progression apart from tremor. She just kind of casually mentioned there was research identifying at least one distinct PD syndrome called “Benign Tremulous Parkinsonism” that seemed to fit my situation, which she then described.

Pressed further by me asking, “does this mean I can plan to be active for some time into the future?” she said, “yes – probably at least for two more decades, as far as your PD is concerned.”

I said, “wow! Does this mean I can go back to school or get a job?” She laughed and said, “Carey, you’re way too intense! Keep the stress at a minimum – maybe start with one class – but not that PhD or trying to keep a job!”

She then said she didn’t want to change any of my meds, but I was to exercise, exercise, exercise, maybe add meditation practice and yoga or tai chi for stress reduction, and get back into therapy for depression. I'll see her again in two months along with the occupational therapist.

So that’s about it. I am cautiously optimistic.

Other notes:

Besides its importance to the care and treatment of patients, another reason to pay attention to the emergence of PD syndromes is the impact on clinical trials. The study states: “identification of these patients in clinical neuroprotective therapy trials may be important, since disproportionate distribution of these patients in treatment groups will distort the outcomes.”

The study’s claim to have identified a distinct syndrome leaves some wiggle room. “Neurodegenerative diseases are heterogeneous and display a variety of rates of progression. Could this simply represent one end of the bell-shaped curve of typical PD? Although we have no current means to be certain, as we did not have data from pathological studies, the near absence of progression apart from tremor and inconsistent response to levodopa therapy suggest that benign tremulous parkinsonism may represent a unique disorder.”

--------------------------------------------------------------------
For those who want to know more, below is a breakdown of why I think the term Benign Tremulous Parkinsonism correctly describes my experience with PD.

The study states “Benign tremulous parkinsonism may be a distinct clinical entity characterized by tremor predominance plus minimal progression of other aspects of parkinsonism. The tremor is often not very responsive to levodopa therapy. In this series, most patients had immediate family members with a diagnosis of tremor or PD. . . . What has distinguished them has been a consistent constellation of clinical features: (1) prominent resting tremor that is the first or among the first signs and that persistently overshadows other aspects of parkinsonism throughout the course; (2) non tremor components of parkinsonism that remain mild; (3) absence of gait disorder apart from reduced arm swing or mild stooping; (4) no more than mild progression, except for tremor, despite at least 8 years of parkinsonism; and (5) absence of disability apart from tremor.”

Longevity and progression: I had a tremor in my right hand for about 5-6 years before I sought a diagnosis (it was only when others noticed it that I decided to seek a medical opinion). The diagnosis of PD was in April, 1999 when I was 41. Eight years later, my symptoms have very slowly progressed, if at all, other than tremor. I have lived at least 13-14 years with a right hand resting tremor.

Symptoms: I presented with right hand resting tremor; this is the only symptom that has shown significant change – I now also have a left hand tremor (resting and action, which hinders my writing); it’s not as bad as on the right. So far, I do not have tremor in my lower extremities or any other part of my body. I also presented with the absence of an arm swing on the right side, a symptom of which I was unaware, but was immediately discerned by my neurologist. My writing had begun to deteriorate, and is now illegible. I have mild, non-progressive bradykinesia that responds well to levadopa; I have no balance problems; I occasionally drag my right foot, otherwise I have no gait problems; I have stooped posture, but have always slumped – never have had good posture. My fine motor skills are impaired; gross motor are not. I have had no change to my voice. The study does not address depression, but I have suffered from, and been treated for depression throughout. I exhibit no decline in cognition – although stress can adversely affect certain cognitive functions for short periods of time (concentration, word retrieval, etc). My memory, long and short term, remains strong.

Medications: I was on agonists alone for 6 years; they controlled my symptoms fairly well (not my tremor), but caused significant problems of daytime sleepiness, certain obsessive-compulsive behaviors, and foggy thinking, so I stopped and began taking levadopa two years ago. It improves my overall movement, but has no impact on my tremor. I started amantadine a year ago, and it controls my tremor. I take Effexor for depression and anxiety.

Family history: No Parkinson’s or other neurological disorders. However, my father has had a hand tremor for years; never progressed or been diagnosed (I can’t think of a time he has ever been to a doctor). He is an active 73 years old.

Disability: I stopped working full time in August, 2002. I had a horrible situation at my job at the University of Washington after 18 years of wonderful employment there. The situation led to severe stress, major depression, and nervous breakdown – all mental and emotional symptoms that went untreated for several months before I dragged myself back into the doctor. I was placed on immediate disability leave and began intensive physical, occupational, and psychological interventions. My physical symptoms were exacerbated by the stress I was under; conversely, the Parkinson’s made it harder for me to deal with problems at work, and impaired my usual resiliency. It was difficult to recover, and that, combined with University politics, led to my layoff six months later (I sued the UW a year later and was successful in obtaining a modest out of court settlement). Trying to start over was virtually impossible for me (my divorce, initiated by me, was finalized at the same time I was losing my job). I opted to apply for SSDI, which was granted two years ago. I am only now regaining a sense of control over my life.

Bottom line on disability: depression and stress, not physical symptoms, were, and continue to be, mainly responsible for my disability. Tremor interferes with my ability to write and type, further contributing to disability.
__________________
Carey

“Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony
indigogo is offline   Reply With Quote
"Thanks for this!" says:
imark3000 (06-30-2010)
Unread 09-28-2007, 05:46 PM   #7
EnglishCountryDancer
Member
 
Join Date: Sep 2006
Location: Devon,England
Posts: 260
Default A am in the dark.

I do not know what average progression is.How well are most people after 3 years,6 years,9 years etc. As P.D does seem to be a syndrome it is difficult to get an answer.My husband has had a tremor in his right(parkinsons side) foot when excited or annoyed for over 25 years.Was this Parkinson's?How do we judge his progression rate,how do we judge each one of us?Is there a norm against which we can judge ourselves?
EnglishCountryDancer is offline   Reply With Quote
Unread 09-28-2007, 07:07 PM   #8
rosebud
Member
 
rosebud's Avatar
 
Join Date: Aug 2006
Location: Great Green Pacific Rainforest
Posts: 488
Default Carey

Thank you for posting this. I just left a rant on Tena's thread about how I think I ended up with a pD diagnosis in the first place...but that's another story. I learned that the people who were my parents were likely not my biological parents (truth is stranger than fiction) and so I have no reliable family history to look at. I am tremor dominant and my tremor responds well to a heavy dose of sinemet. But I have no other signifigant signs of PD. My tremor has gotten worse over time and is hugely affected by my blood sugar levels and no amount of complaining to neuro or family doctor gets me anywhere. My A1C is under 6. The magic number in Canada for Diabetes.
The latest "odd" manifestation of my disease is that I wake up in the morning tremor free and can read, or knit or whatever, as long as I don't stand up or move around much I am fine. I take 50/200 + .5 mirapex, and as soon as that stuff hits my brain It kicks in my tremor in my legs. As soon as that starts I have to get out of bed and start moving around or it escalates into an unmanageable tremor and I'm stuck for who knows how long. I am frustrated and angry because so far nobody can explain why this happens. When I'm on, I am fully functional. People who don't know I have PD can't tell there is anything wrong with me. My handwriting is still very good, I get compliments on it regularly. I'm reasonably cognizant (??) but sitting at a computer or other "no movement" activities cause my meds to get quite unreliable. My treadmill is my best friend. My neuro has all sorts of ideas about stretching out my sinemet, but we can't get my body to budge off its two hour schedule. I rarely have dyskinesia unless I seriously overdose...I could go on, but I bore the hell out of myself. .. so do I fit this criteria too? To say PDs a strange disease is a gross understatement!
__________________
I would never die for my beliefs because I might be wrong. Bertrand Russell
rosebud is offline   Reply With Quote
Unread 09-28-2007, 07:52 PM   #9
indigogo
Senior Member
 
indigogo's Avatar
 
Join Date: Aug 2006
Location: "all the way over on the West Coast"
Posts: 1,032
Default

Quote:
Originally Posted by EnglishCountryDancer View Post
I do not know what average progression is.How well are most people after 3 years,6 years,9 years etc. As P.D does seem to be a syndrome it is difficult to get an answer.My husband has had a tremor in his right(parkinsons side) foot when excited or annoyed for over 25 years.Was this Parkinson's?How do we judge his progression rate,how do we judge each one of us?Is there a norm against which we can judge ourselves?
I think that is just the point - there is no norm because PD is not one disease.

Even what my doctor told me, that I could plan on another couple of decades of being active with PD, was an educated guess - there's no long term documentation. But there was no reason for her to believe that I would begin to progress at a different rate than I have for the 14 years since my tremor first appeared. Nor did she think that I would begin to acquire other symptoms after living so long without them.

Seems to me, the designation of Benign Tremulous Parkinsonism can only be made several years after initial PD dx, as longevity of tremor without other symptoms is part of the definition. It's nothing I could have known or prepared for as I started on the PD journey. Believing at the outset that "maybe I'll only have a really bad tremor and never experience many of the other symptoms that are PD" would have seemed unrealistic if not downright nuts.

I think my doctor has the right idea - labels are not as important as treating the symptoms of each individual person who walks through the door. There's a more nuanced approach to treating PD than just throwing more sinemet at it.

The lesson for me is more psychological - start living my life without the fear of losing my life to things that haven't even happened yet, and might not ever happen. It's hard for me to do.
__________________
Carey

“Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony
indigogo is offline   Reply With Quote
"Thanks for this!" says:
imark3000 (06-30-2010)
Unread 09-29-2007, 10:29 PM   #10
vlhperry
Member aka Dianna Wood
 
vlhperry's Avatar
 
Join Date: Oct 2006
Posts: 735
Default I have been trying to get the message out for years

I was given a genetic test of my Parkin gene and had 2 mutations, which is extremely rare. Young onset Parkinson patients have a 50% chance of having one mutation which helps to confirm the diagnosis. In Europe what I have is called Parkin Disease. It is different than idiopathic parkinson disease. It starts with weakness on one side as well as tremor. As it progresses, the tremor disappears, the progression is slower than idiopathic Parkinson's and dystonia is a more debilitating symptom than tremors. In the more advanced state of the disease, the autonomous system becomes affected causing problem with blood pressure, heart, swallowing and lungs. DBS surgery is the best option to treat this form of Parkinson's disease.

I have listed several studies to back this up. Folks, just learn as much as possible about your illness. Do what you feel is the best to treat your symptoms. If you disagree with a neurologist bring as many studies you have found online that apply to your situation to direct the neurologist observation on you as an individual. They have become accustumed to treat diseases; not patients. If you want to be treated as a patient, educate yourself by searching for studies that apply to your symptoms. Learn of the latest technology which can rule out or confirm your symptoms and ask your neurologist to order them. Be an active member of your medical team and not passive. When you understand your disease, and part of the nature of your disease is neither you nor your neurologist can, with today's technology, improve or control your symptoms, accept it and find other things to focus on in your life. God laughs loudest at man's folly when making plans.

The hardest thing in the world is to admit to yourself you have no control of your physical wellbeing. After this lesson is learned, you once more learn to enjoy life within the limitations and stop working so hard to control your world and those around you. It has taken me 53 years to reach this point. I get unhappy and lonely with the emotional rollar coaster of living with illness, and how hard it is to retain friendships when you are up for a couple weeks, and then have a setback and find yourself striking out in anger at friends. Heck, the disease leaves ourselves loving our lives one day and hating ourselves the next. I hate my inconsistent behaivior, but must accept it as well as be understanding of the difficulties it places on relationships. But I never was happy with who or what I was before my diagnosis.

Peace to you all,
Vicky
vlhperry is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Possible risk of parkinsonism, PD, ET - Dental Technicians Lara Dentistry & Dental Issues 2 08-19-2007 02:58 PM
Lyme-Associated Parkinsonism rd42 Parkinson's Disease 0 03-29-2007 09:32 PM
Patients with 'benign' MS should be told disease can progress: researchers DocJohn Health News Headlines 0 02-12-2007 11:10 PM
PD, vascular parkinsonism or none + strange, vivid dreams larawa Parkinson's Disease 10 02-08-2007 10:17 AM
parkinsonism bamyx4jc Parkinson's Disease 2 10-19-2006 01:45 PM


All times are GMT -5. The time now is 01:36 PM.
Brought to you by the fine folks who publish mental health and psychology information at Psych CentralMental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.


All posts copyright their original authors • Community GuidelinesTerms of UsePrivacy Policy
NeuroTalk Archives