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I'm trying to find more information on the PD variant PIGD or Postural Instability and Gait Disorder. I can find brief mentions of it and a couple of research papers, but what I would like is a description of what symptoms fall under this classification. I am among the 30% (?) of patients who do not have tremors. In fact if you look at the list of qualifying symptoms for PD I don't have any of them and do have a lot of the symptoms that are considered disqualifying for PD such as bilateral symptoms, early falls. Yet my DatScan showed positive for PD and Sinemet works wonders for me. My doctor who is a movement specialist doesn't know how to classify me or what is wrong with me. I was hoping to be able to take the symptoms for PIGD in when I see her again in Nov. and ask about it. Has anybody seen any information that I may have missed on this variant?

 

Kathy

 

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Hi Kathy. I have both postural instability and gait disorder but have never heard the acronym PIGD. I am a member of several Facebook groups for PWP and there is a lot of information available there. I just thought it was a part of my experience of PD. I use a walker which keeps me from falling.

 

Dianne.

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my experience started with falls and severe shoulder pain. I've been to multiple neurologists and for 3 years they couldn't find anything wrong so I was told it was all in my head but my family doctor would not accept that. Finally we found a doctor who decided to try sinemet. The pain in my shoulder went away and stays away as longa s I take my sinemet. If I am late taking it my whole body feels as if I have restless leg syndrome. The closes variant to me is one of the atypical parkinson's PSP except I do not have the problem with my eyes. I went to a lecture last week on PD and the guy mentioned PIGD but said it wasn't common and did not want to confuse people by talking about it

 

I know it doesn't really matter what the name of my disease is, but I keep hoping we will come up with an idea because it might help with treatment. I lose my balance a lot, walk like a drunken sailor, I use a walking stick just to try to keep me going in a semi straight line.

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Have you seen a Movement Disorders Specialist? Balance and gait issues are quite common symptoms of PD. If you could see an MDS, you could be referred to a Physical Therapist  who is knowledgeable about PD and you can learn how best to adapt to these changes in your body. PD is being called a snowflake disease because there are 50+ possible symptoms and no two people have the same constellation of symptoms or the same severity of symptoms. My diagnosis was made by a regular neurologist. He had never heard of an MDS. I suggested to him that I try PT and he said he guessed it couldn't hurt. It was only after I went to a Parkinson's Center of Excellence that I was fully evaluated and referred to PT, OT and a speech and language therapist who could address my constellation of issues.

 

Dianne

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Yeah I'm being seen by a movement specialist and I've been through physical therapy twice. Once or PD issues and once because I have peripheral neuropathy.  That's another reason why my MDS doesn't know where to classify me. I'm not diabetic but I lost all feeling in my right foot within a month and the next month lost all feeling in my left foot and 3 fingers of my left hand. Was sent to a physiatrist and there is no obvious nerve damage causing the neuropathy.

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I'm currently seeing a Physiatrist as well. I do not think much of that sub-specialty of medicine for diagnosing and treating patients with Parkinson's Disease. I am having pain in my Piriformis muscle in my right buttock. She can't find the cause on x-ray or CT because it's in the muscle. According to my research the solution is a Botox injection. I don't know her well enough to have a sense of her openness to self-diagnosis. There is an interesting article in the current issue of Neurology Now about self-diagnosis. Some doctors are offended by us thinking we know our bodies better than they do.

 

Dianne

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I am not your "classic" Parkinson's patient either, but most all of my symptoms match the checklist you see on PD websites.  So, I just accept I have PD with a dab of strawberry or one of the other 101 flavors that are out there.  The physician on this site posted that he believes there are many versions of PD and that we just haven't discovered them yet.

 

However, if you can't treat all your symptoms with the list PD meds or PT sessions, that would be frustrating and confusing. Hopefully, one of the suggested PD diets will help also if you haven't tried that. 

 

I am fortunate enough to respond well to the classic meds, but I am also requiring a lot to maintain well already.  So, I am turning toward DBS; which may be another option for you.  I had back pain and nerve pain, and some sensation issues also. Similar to you, a lot issues went away with PD treatment.  I hope you find a good answer. 

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The only med I'm on for PD is Sinemet. It actually handles most my problems except for some of my pain. I'm not eligible for DBS because it make falling worse. I'm contemplating trying medical marijuana but in my state Parkinson's disease does not qualify. However, intractable pain does. Like many of us, I am in constant pain. I find it hard to believe that until recently Doctors did not recognize pain as being part of PD.  All in all I'm doing quite good. PD hasn't interfered with my life too much. I have started to work out for a couple of hours each day in a pool near me. I find that wile in the pool I don't hurt as much o I give myself a mini vacation every day.

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Kathy, I was diagnosed with PIGD by two different neurologists at one of the country's best known Movement Disorders Clinics. 2.5 years into this illness and I have a lot of information to share if you or anyone else is interested.

 

Quote

 

 

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The tremor subtype of PD is associated with preserved mental status, earlier age at onset, and slower progression of the disease compared with the PIGD subtype, which is characterized by more severe bradykinesia, cognitive impairment, and a more rapidly progressive course. Furthermore, the PIGD-dominant type of PD had a higher risk of reaching an end point, the degree of disability necessitating levodopa treatment. The association between axial (PIGD) impairment and incident dementia has been demonstrated also by other studies. Our longitudinal follow-up study provides support for the hypothesis that, based on total UPDRS scores, the PIGD group has a less favorable prognosis, showing a steeper slope of progression than the tremor-dominant group. Furthermore, the late-onset subtype is characterized by rapidly progressive motor and cognitive disability. In this study we confirmed that patients 57 years or older with late onset of symptoms had a more rapid progression of disease than those whose symptoms began before the age of 57 years. We also showed that men and older patients progress at a more rapid rate than female patients and patients with young-onset PD. Furthermore, our and other studies have shown that patients with predominantly axial involvement (such as those with the PIGD-dominant type of PD) are more likely to manifest cognitive decline compared with the more typical form of PD. This subset of patients may have additional nondopaminergic degeneration, thus explaining the poor response to treatment with levodopa and dopamine agonists. 

                                                                                       -- JAMA Neurology

Dr. Joseph Jankovic describes Parkinson's PIGD in this video "What Are The Different Forms and Stages of Parkinson's Disease."  Link:  https://youtu.be/pf6BGBl8-0U

                                                                                       -- National Parkinson's Foundation

(PIGD), a troubling constellation of symptoms that are poorly understood and respond inconsistently or not at all to dopamine replacement therapies.

                                                                                       -- Michael J. Fox Foundation

PIGD progresses rapidly, and often does not respond well to Levodopa; as a result the prognosis for this type is not as favorable as with the tremor dominant type.

                                                                                       -- Health-Stories.org

                                                                       o "What Are The Different Forms and Stages of Parkinson's Disease."  Link:  https://youtu.be/pf6BGBl8-0U

                                                                                       -- National Parkinson's Foundation

(PIGD), a troubling constellation of symptoms that are poorly understood and respond inconsistently or not at all to dopamine replacement therapies.

                                                                                       -- Michael J. Fox Foundation

PIGD progresses rapidly, and often does not respond well to Levodopa; as a result the prognosis for this type is not as favorable as with the tremor dominant type.

                                                                                       -- Health-Stories.org

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Since there appears to be a lack of concise information on the web about PIGD (Postural Instability Gait Disorder), I have decided to create a website about this Parkinson's phenotype. I hope to publish it very soon. In the meantime, here is some additional information I've discovered:

PIGD is thought to affect only about 2 to 7 percent of Parkinson's patients. It tends to occur in older patients. 

According to experts, PIGD affects only a subset of Parkinson's patients, but is associated with highly troubling clinical features such as a malignant and faster-progressing disease course; greater psychological disturbances including anxiety and depression, as well as significant balance, walking, other motor and autonomic challenges. PIGD patients have a three-fold increase in the likelihood of developing dementia and are much more likely to require care facility placement. Their risk of falling is 10 times greater than the normal aging population.  

PIGD encompasses a constellation of Parkinson's symptoms including speech problems, freezing of gait, difficulty initiating movement, shuffling, falling and other specific problems with balance. No currently available PD treatments alleviate these symptoms. Their biological causes are not well understood and may originate outside the dopamine system, as these symptoms respond inconsistently or not at all to dopamine replacement therapy.

PIGD patients commonly have greater bulbar challenges, as well as more autonomic and pain complaints. Anxiety is said to be three times more prevalent in this form or expression of Parkinson's.  

Edited by Dan McFarland
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Dan, thank you so much for taking the time to share these two posts with us.  Are you by any chance in the health profession?  At any rate, these are very well written and helpful.

I'd be interested to know what you think about my situation with PIGD.  I have had symptoms of Parkinson's for years (tremor, fatigue, cognitive issues) but was not diagnosed until 4.5 yeas ago when my tremor began to show in both hands. So it has progressed slowly over time. I did not have PIGD until the last 2 years or so.  Would you think that may be because is comes from the natural aging of the brain rather than being dopamine related?  I don't have serious issues you mention above that usually go along with PIGD.  But I do have a meningioma that abuts my cerebellum that makes me wonder if that may be what is causing the PIGD.  I get yearly MRI's to follow whether or not the meningioma is growing.  So far it has been behaving pretty well.  :-)   Thanks for any insight you may have on this.

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