Just joined: Hi! I just joined and hope to... - Cure Parkinson's

Cure Parkinson's

26,588 members27,913 posts

Just joined

NancyJHP profile image
19 Replies

Hi! I just joined and hope to find out more about Parkinson's. After researching my symptoms online, I came across this site and downloaded the app. My order of acquiring symptoms seems to be a little different from the textbook norm. I've already been diagnosed with a mild cognitive impairment, but I still work everyday. The usual websites seem to indicate that cognitive impairment (memory loss, confusion) only happens in the very last stage. Has anyone else experienced this early on? I'm only 52. Thanks.

Written by
NancyJHP profile image
NancyJHP
To view profiles and participate in discussions please or .
Read more about...
19 Replies
arwenmark profile image
arwenmark

With PD there is no textbook norm. Every case is different . My husband started with balance issues and some tremor . In the five years since diagnosis he has developed some memory issues, unawareness of dangerous activities, bowel and bladder problems, swallowing and speech issues and Hallucinations . The cognitive impairment may also mean you have a different Parkinsonism, like PSP or CBD or MSA.

NancyJHP profile image
NancyJHP in reply toarwenmark

Thank you. That is helpful. Sounds like he has the same issues as me, except for the swallowing and speech.

GymBag profile image
GymBag

Welcome

I am the resident grumpy old man. What you said seems a bit unusual . Something we see over and over is miss-diagnosis. What were the qualifications and experience of the person who diagnosed the PD and what did they base it on and similarly the cognitive impairment. What are your symptoms and what medications are you taking?

52 is unusually young for either and there are many reasons for memory loss and confusion, high blood pressure etc. What effect did the medications have on your symptoms ?

Bailey_Texas profile image
Bailey_Texas in reply toGymBag

He doe say he was diagnosed only researched the web.

Hikoi profile image
Hikoi in reply toGymBag

This podcast gives some differing perspectives gymbag

soundcloud.com/world-parkin...

Bailey_Texas profile image
Bailey_Texas

Have you been diagnosed.

S70AWD profile image
S70AWD

I was diagnosed first by my primary care doctor, then by a local neurologist, and finally by a Parkinson specialist / MDS at the U of P Hospital in Philadelphia. So I'm pretty sure I do have PD. I am still in the early stages, mostly right side tremors, but I have also started to experience cognitive impairment and speech and swallowing problems. So far no balance or freezing issues. So it all comes upon each one of us differently, and all you can do is take it as it comes, one day at a time.

ddmagee1 profile image
ddmagee1

It is my experience, living with PD, that my symptoms, also, are a bit different, in the order listed; however, I have come to realize that in reality, it seems like there are variants of “Parkinsonism”, that are classified under the general term PD. Each person has symptoms differently, and to a different level of severity. That is why, I prefer to think of this ailment as a neuro-degenerative disorder. The extent of the symptoms, depends upon where, in the brain, neuro-degeneration has occurred. Basically, the substantia nigra area is affected, from what original research revealed; however, further neuronal damage can occur in some other areas, from what some researchers conclude, and the only way to know, for sure, what Lewy Body/neuronal damage has been done, is at autopsy. Textbooks state this information, publically. It makes sense that the disease process is different for each person, dependent upon the extent of neuronal degeneration. Some people are very fortunate and have mild symptoms most of their lives. Others, have a more rapid progression of neuronal degeneration. Some people, I believe, may have a combination of ailments, which present a challenge to a neurologist/ movement disorders specialist. Accurate diagnosis is a challenge and only a trained neurologist or movement disorders specialist are equipped to do this. I would recommend getting a second opinion, also, because accurate diagnosis and treatment is important. Levodopa treatment for Parkinson’s patient’s can be very helpful in relief of symptoms, for example. A diagnosis of mild cognitive impairment should have a root cause, that, perhaps, your Doctor could discuss with you and then go from there. Good luck as you seek information. Knowledge is power, as the saying goes.

Hikoi profile image
Hikoi in reply toddmagee1

This podcast explains mci and how it happens in pd. it supports much of what you write ddmagee. I hope you find it interesting.

soundcloud.com/world-parkin...

ddmagee1 profile image
ddmagee1 in reply toHikoi

Hikoi , thank you so much for sending this. It explains exactly what I was trying to write. King’s college research and the community of researchers in Great Britain have, I believe, done many good things in helping physician’s and patient’s understand much about the pathophysiology of what consists of neuro-degenerative diseases, and, perhaps, more research will bring more medicine and other ways to help those of us who suffer from the detrimental effects of the neuro-degeneration of Parkinson’s Disease. This is most interesting and for me, personally, verifies the many motor and autonomic symptoms that I’ve had over the years. Also, levodopa helps me with tremors, but does not help me with balance problems, or my swallowing problems, as an example. Actually, I learned more from this, than from what my neurologist has told me. This explanation really got into the details! Thanks again!!! You’ve done a good deed in helping me today!

Hikoi profile image
Hikoi in reply toddmagee1

So pleased you found it interresting ddmagee

Sleeplessparki profile image
Sleeplessparki

Welcome aboard!! I was the class of 2010 at age 52 as well. I’m now 59 and am just starting to decline at a more rapid pace. I enjoyed roughly 5 years of relative bliss but now I’m experiencing more ridgetidty and tremors primarily on my right side, can’t sleep, can’t roll over in bed, small motor skills are gone, bladder issues, to name a few! I’m not complaining others on this site have it worse. I hope your situation turns out better than mine

Best wishes

NancyJHP profile image
NancyJHP in reply toSleeplessparki

My rigidity is terrible. I'm interested how you say you can't roll over in bed. My significant other has been complaining for months now that instead of rolling I've been doing a jump, flop type thing instead of just rolling. Is this what you do or did?

Sleeplessparki profile image
Sleeplessparki in reply toNancyJHP

I have to actually get out of bed with a lot of pain and approach the bed with my right leg and kinda push myself up and then turn to my right or left depending on which side I want to sleep on and flop down, also I have to stay close to the edge of the bed otherwise it makes matters worse. As I said I have bladder issues so I have to go to the bathroom 5 times a night sometimes with urgency so it is imperative I’m near the edge. It’s a wonderful life lol

Hikoi profile image
Hikoi in reply toNancyJHP

Nancy jumpflop sounds a very apt description of my way of rolling over. Difficulty in turning in bed was one of my pre diagnosis symptoms

Donzim profile image
Donzim

Please read my other posts...we used every thing, in and outside the usual medical advice, so had a lot of experience. You may find the rigged stationary bike helpful. Rehab can teach you a technique on how to get out of bed. Rehab is very important to teach you techniques on how to deal with various problems. Find the Big and Loud program at your local hospital...a great program.

There are various supplements which can help cognitive issues. We used pycnogenol, DMG, C and anything which improves circulation to the brain.

NancyJHP profile image
NancyJHP

I've been using the stationary bike at the Y a few times a week, that helps me, but nobody had suggested it for my rigidity issues. I've been rolling out of bed myself, I didn't think about rehab techniques, but my daughter is a physical therapist so I will ask her.

park_bear profile image
park_bear in reply toNancyJHP

Some form of levodopa, preferably time release, should help with the rigidity issues. Worries about early use of levodopa increasing dyskinesias have been put to rest so there is no good reason not to avail yourself of this treatment.

Hikoi profile image
Hikoi

Nancy. mild cognitive impairment (mci) is just so common in PD and not at all unusual to have it early on. It doesnt mean you are heading for dementia in case you are wondering. Some meds can make it worse in some people. The podcast I posted above is worth checking out, it talkes about cognitive problems and others.

Here is the link

soundcloud.com/world-parkin...

Not what you're looking for?

You may also like...

Low Vitamin B12 and Parkinson DiseasePotential Link to Reduced Cholinergic Transmission and Severity of Disease

Dysfunction of the cholinergic systems in PD is thought to possibly play a contributory role in...
Rosenmu profile image

Brain degeneration

I’m new here elderly woman diagnosed with “mild cognitive impairment” (frontal lobe dementia)....
Learn3 profile image

Anybody here have any days that are anywhere near normal

Howdee. Diag 2016, 63 , on azilect nac and Mannitol. Main symptoms , tremors which are increasing...
Ameister profile image

Dementia with PD

I am really concerned with dementia. The doctor gave Exelon patches for his loss in memory. I am...

Just joined this group.....feedback welcome.

I was diagnosed 3 months ago. I'm a 51 y.o. male. My symptoms started a few years ago with the tip...
Jockboy17 profile image

Moderation team

See all
CPT_Aleksandra profile image
CPT_AleksandraAdministrator
CPT_Anaya profile image
CPT_AnayaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.