Postural Instability Gait Disorder PIGD

[FMundo]

There apparently are two subtypes of Parkinsons. I am wondering whether or not I have PIGD. My only observable symptom is that I drag my left heel unless I concentrate on foot placement. As this is my only symptom (other than mild internally felt tremors in my left leg at times. I also note the Sinemet (Levodopa Cardopa) ... dopamine replacement seems to have little or no effect on my minor symptoms. These two facts stated, is this sufficient to put me in the PIGD camp as opposed to the Tremors at Rest camp?

[Hidden]

My understanding, not until five or so years post dx may a doctor predict possible future progression.

I hope you have the tremor dominant form.

[Pete-1]

Well that's a new one. Never heard of PIGD. Reading a bit more it seems I am a PIGD case also. What other, unobservable to an outsider symptoms like reduced sense of smell, constipation, illegible handwriting, reduced arm swing (observable one crept in there) do you have. How about difficulty makeing your eyes take an upwards gaze while keeping your head still. If unable then possibility that you have PSP rather than PD. How about muscle cramps, depression and the rest.

Regarding the Levodopa of whatever flavour, I found no discernable difference between taking and not taking a dose. However, after doubling the dose the effect was profound. I found I was pretty much back to normal. No frezzing or turning en bloc, or shuffling gait.

If you take a larger dose and still find no benefit then this idoes point to a diagnosis of an alternative type of PD, such as PSP or MSA etc.

[Beckey in reply to Pete-1]

Say Pete, what is PSP, anyway? Thanks.

[Pete-1 in reply to Beckey]

The following link is to access the relevant PSP page of wikipedia.

en.wikipedia.org/wiki/Progr...

[FMundo in reply to Pete-1]

Peter,

I'm surprised that you haven't heard of the Parkinson subtype of PIGD.

You can see a definition of the subtypes from a physician at Baylor University.

youtube.com/watch?v=pf6BGBl...(Not working as expected?)

sometimes the "D" is defined as "Difficulty" other times "Disorder."

Frank

[Pete-1 in reply to FMundo]

I have been aware of those who have, apparently, no temor who amount to about 1 third of ideopathic PD as having a type of PD that progresses more swiftly but I have not before encountered a definition and the name PIGD is also new to me. I expect further careful reading would reveal all kinds of stuff that is new to me.

[Hikoi in reply to Pete-1]

Pete

I think there are different labels in different countries. I have only heard PIGD used by those from the U.S. for instance. Also though we all have the stage system I generally don't hear people in Europe or Oceania talking about stages but it seems important in the US. Just different approaches in different places.

[Pete-1 in reply to Hikoi]

Hmmm, Thank you Hikoi for your explanation of this different US perspective

[Jamielee1 in reply to FMundo]

Hey that's my Doctor!

[honeycombe3]

How fascinating! PIGD - I'm with you Pete never heard of it until now. I think I recognise the symptoms but the acronym....no.

FMundo it is always helpful to have a little background information before attempting to offer any advice or support:

how old are you

how long dxd (diagnosed)

what country are you from

by what criteria/procedure/tests were you dxd

what meds are you taking, what dosages & for how long?

My personal experience, very briefly, as it relates to your question. I was dxd 10 years ago (UK) after feeling that i was gradually losing the use of my left side - no visible tremor, dragging foot & the beginnings of my left side turning in on itself when at rest. Had a nerve test which determined the nerves were fine but the messages from the brain were getting scrambled. My consultant debriefed me immediately with the warning that it might be PD & suggested I came back in a week with my husband for a proper consult. Best thing that happened to me since PD - got a consultant geriatrician with a special interest in PD. Gives me loads of time, puts me at the centre of decision making works with all the support team as equals...I could go on. Went on the PD meds trial at Birmingham University which meant I went to hell for a month on Sinemet which did not suit at that time (does now). Put me off meds so on a tiny dose of RequipSR for 2 yrs with only natural meds & therapies until I could barely move then started on a more conventional regime. Today, most of the time people don't know i have PD Thanks to Sinemet+, RequipCR 8mg, & ApoKyn injections 1-4 daily for freezing (a relatively new phenomenon). I shake badly when I do & I freeze badly. I have my sense of smell, my writing is poor as ever but large, my balance is iffy but I rarely fall. I have lots of pain & many non motor symptoms which are the worst: poor retention, inner tremors cramps, weakness etc. On my 3rd clinical trial I was given every possible test: scans, motor skills, memory, endurance, frustration levels, sleep monitoring....if you want to keep abreast of advances in the treatment of PD, meet a lot of fantastic fellow PwP (People with Parkinson's) & receive the best treatment from the top professionals join clinical trials.

[FMundo in reply to honeycombe3]

I am 69, live in the U.S. was diagnosed 5/14 and received a second opinion after a several visits to the Mayo Clinic in Phoenix which included a DaT Scan in January of this year. There is not a shadow of a doubt based on the DaT Scan that I have a "deficiency of Dopamine " in my brain, and that I have Parkinsons. I am in very early stage, one side symptoms (left foot dragging minor non-visible tremor I can feel in left leg, occasionally left arm).

There are two Sub-types of Parkinsons. "Tremor at Rest" and "Prostural Instability Gait Disorder." This I learned from a presentation given by a neurologist at some hospital (I'm vague here as this was recorded and I viewed it on the internet. The audience I believe was other neurologists. The two subtypes are differentiated because of their major symptoms, the speed with which PD progresses and the likelihood that the patient will develop dementia. People who have PIGD version go downhill much faster, have many more gait related symptoms (freezing) balance issues and often very few tremors. For PwP's 70% fall into the TAR category, 30% in PIGD.

Currently I am on and off Sinemet which seems to do little for me. I am taking LDN (3.0 MG) and am exercising a lot. For a whole bunch of reasons its important to know which of the two parkinsons sub-types I fall into. Neurologists have not been able (or willing) to disclose this to me. It may be too early to know based on how little history I have with symptoms.

[honeycombe3 in reply to FMundo]

Thanks for your response,PD is a slippery customer like something from classical legend constantly changing shape & form. You seem to have had a thorough diagnosis which is not always the case. I'm intrigued by LDN as when I last queried it I was told that it's beneficial effects may euphoric. If it works for you that's all that matters.

[Hikoi in reply to FMundo]

Hi FMundo

I think in lay terms we talk about tremor or stiffness dominant. About 30% are stiffness and there are differences in other ways but i try to keep well informed without getting too categorized. I think my future will be whatever it is.

Your presenting symptoms sounds very similar to mine and i am tremor dominant. you probably will find your left arm doesnt swing either. With meds you may not have reached the appropriate dose or been on long enough. You will know when you need to start meds, when the symptoms interfere in your life too much.

[FMundo in reply to Hikoi]

I love your phrase "... without getting too categorized." My problem is I "self categorize" am too inclinded to dump myself into the worst possible pigeon hole and dive into depression. This is year one for me. (Could you have guessed?)

I'm frustrated and frightened, want to make the "right decisions" as far as living arrangements are concerned (standalone home, CCRC, etc.) , the only people I really trust are those who have PD... I'm very cautious in dealing with Neurologists who are to my mind reluctant to share their best judgement with you.

My left arm swings exuberantly along with my right. So far so good.

Frank

[Hikoi in reply to FMundo]

Frank do you think you are running ahead of yourself? 😊. Although PD is progressive it sounds like yours is going to give you plenty of time and space to make important future decisions.

And you heard there was just two types of PD, thats probably just one way of understanding differences but we are still learning. Take a look at this ....

some potential classifications of Parkinson's very eloquently explained by Dr Michele Hu at the Parkinson's UK Royal Institution Lecture in November: youtu.be/Keuy__i-d0A(Not working as expected?)

[FMundo in reply to Hikoi]

Hikoi, How wonderful it is that you sent me this video link! I'm watching all of these Parkinson UK things! Frank

[Leilani23 in reply to Hikoi]

Hikoi, thank you very much for sending this link to Dr. Hu's lecture. It is excellent.

Leilani

[Lynda57]

I was dx with pd but after not responding well to l-dopa my dx was changed to PSP.

[paddyfields]

When you say "drag my left heel" do you really mean your heel or the whole foot. i.e. drag your foot. Before dx.I tended to unexpectedly trip over nothing on what a few years later turned out to be my Parky side

I never went to the doctor about it (head in the sand). But since dx.symptoms very well controlled I still have to be very careful coming down steps and always hold on to something as I tend to misjudge things and catch my heel on the

previous step no matter how wide the tread is.

By the way suddenly instead of words being inserted they are overtyping what comes next. Anyone else having a problem on this site?

[FMundo in reply to paddyfields]

Just my heel skuffs on landing. I notice it especially on waxed surfaces like at the supermarket. It also occurs when I am tired... or have had a drink (alcohol). An interesting thing is that when I'm hiking outdoors for miles the problem entirely goes away. And its not simply that the ground is more accomodating to a skidding action (like on sand or gravel). It seems that higher order brain functions like looking out for rocks and roots does something. It may also be associated with using a walking stick. But I have to say it ENTIRELY goes away - no thought about placing left foot is required.

Another thing that is gradually beginning to occur is "failure to swivel on left heel." I might be in the kitchen turning to the left. Rather than swiveling on my heel I will suddenly find my right leg crossed over in front of my left.

Its kinda like the "automatic pilot" aspect of walking around has disappeared. Now I have to think about walking whereas before I would simply have a wish to be somewhere, and a left the driving to someone (or something) else to do it for me.

Frank

[honeycombe3 in reply to FMundo]

I can't walk far now as my brain scrambles the movement messages but the heel scuffing I experience, also the leg crossing. I think the crossing thing may be related to 'freezing'. I had to relearn how to walk picking up my feet especially the left.

[paddyfields in reply to FMundo]

The walk,turn,walk test is one of a battery of tests I do every 18 months f a long term research into the progression of PD. I don't have problem unless it is compounded by my hip problem (polymyalgia/) . I fell over in the garden three times one summer because one bit of me turned but similarly to yourself the rest of me didn't and I was falling over my own feet. Fascinating isn't it - how some PWP''s can hardly walk and yet can run, cycle and kick a ball about.

[honeycombe3 in reply to paddyfields]

You may find you have accidentally pressed the 'overwrite' button at the bottom of your page if you are in Windows. I am now using Apple so I'm lost.

[paddyfields in reply to honeycombe3]

I'm not sure what you mean but thanks I'll bear it in mind. Its fixed itself at the moment.