Does anyone else have PD akinetic rigid syndrome? or non-tremor dominant PD? how is your experience different?

[cinziagiannni]

[PatV]

"muscular rigidity with varying degrees of slowness of movement; seen in parkinsonism and disorders of the basal ganglia."

Different from what?

[cinziagiannni]

Different from classical PD I guess.but since we don't have it -- how can we compare?

I guess I am most interested in what you experience i of symptoms and your rate of decline.

I experience -- muscle rigidity and spasms, joint pain, bursitis (which I think is such a funny old-fashioned word; it's like saying, "Oh I got the lumbago.), dystonia in both feet (right one worse). my range of movement is contracted, shuffle, I can't stand up straight pr wa;l unassisted. My PD complicates and is complicated by a serious spinal curvature.

II was diagnosed in 2008 but judging by medical records my doctor conjectures 2005/6. By 2010 I had to retire from my job as a Library Director at a medium-sized state university. According to my neurologist, I'm a stage 3 and in the highest percentile for rate of decline.

I don't know anyone else with this sub-type to know what is "normal." (I know PD is a "boutique" disease; and if you've seen one person with PD, you've seen one person with PD; but I am looking for at least some ONE else.

[camper in reply to cinziagiannni]

I have PAGF (pure akinesia gait freezing) . Also I have small handwriting and sometimes my speech is very faint. Have we got the same thing?

Cheers Camper

[cinziagiannni in reply to camper]

Sounds like it. when were you diagnosed and how far have you "progressed?"

[cinziagiannni in reply to cinziagiannni]

I mean how fast?

[camper in reply to cinziagiannni]

i was diagnosed with PD about 6 years ago but have never had a trenor' I probably had PD for at least a couple of years prior to that. i was slow getting out of the car. chair etc .thats how it all began. my neurologist says I have PGAF (pure akinesia gait freezin) I've had the freezing for a couple of years and it has now got worse it's a challenge every day to not fall over. I have to hang onto my husband when I go out. I cease up constantly and I avoid going into shops which have narrow aisles or lots of people in them. How has your PD progressed? Since being diagnosed I've never had a tremor.

[cinziagiannni in reply to camper]

I was diagnosed in 2008 but like you, my doctor thinks I had it for several years before. so 6 or 7 years for me too. I do tremor when tired or when its been a long time since my last dose of sinemet. I can hardly walk without a walker and its hard to type i'm declining so much faster than my friend with classic PD that I was thinking it had to do witth my different diagnosis.

[JesusIsMySavior]

Neurologist here in US called my diagnosis Akinetic Parkinson's. Virtually no tremor unless very tired. Most noticeable symptoms for me are increased muscle tone esp. in shoulders and legs, micrographia, RLS paticularly at night, difficulty and slowness of movement in off periods. Sometimes pain in shoulders can only be relieved with heat.

[aggiebiker]

Although I don't recall my neuro using that term I think I share the same symtpoms. I don't typically exhibit any tremor unless fatigued. I have experienced dystonia in my feet and muscle soreness in my right leg. So far I have not experienced any balance issues or walking problems. I generally sleep pretty well although sometimes the muscle soreness makes finding a comfortable position to sleep in difficult.

I have been on Azilect and Stalevo since diagnosis (last May/June but more than likely had symptoms prior to that date) and haven't noticed any perceptible worsening of symptoms although lately the muscle soreness seems more pronounced and consistent.

Not sure if that was the type of information you were looking for or not. God Bless....

[cinziagiannni]

thank you both so much for your answers! Aggiebiker was diagnosed in 2011, when were you, JesusismySavior?