Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

I have PD


  • Please log in to reply
51 replies to this topic

#41 tremblenurse

tremblenurse

    Advanced Member

  • Members
  • PipPipPip
  • 103 posts
  • LocationTampa Bay Area

Posted 24 August 2013 - 08:04 PM

Oh and as an aside... PD is an exclusionary kind of diagnosis in many (dare I saw most/all) cases...everything needs to be ruled out FIRST before a dx can be made.

During my journey to diagnosis MS was thrown around many more times than I care to count..and because it seemed that it was the culprit I grabbed on to it...it gave me a name...a face to the monster...a face of hope (Montel Williams)...and I read all about it and it fit me perfectly (or so I thought),,,funny thing is my very first recollection that something was wrong also came with the thought "Oh, I hope this isn't that shaking disease" (I wasn't a nurse yet and couldn't recall the name)

During my journey I've been checked for just about everything

Vitamin B12 (multiple times), Thyroid, Lupus (multiple), ANA, ESR, Sjogren's, Sleep apnea; Lyme diseas; Sarcoidosis; Wilson's; Epstein Barr (past positive); CMV (past positive); RA; I'm sure I am missing things.

I've had MRIs which show minimal brain lesions, none consistent with MS. Neuropsych testing that shows "subcortical disease similar to MS or other" (and a few years ago I was a straight A student).

Although my symptoms seemed very much like MS...they seemed to go away (but now that I know what was going on they weren't gone...just not as bad at times and have been very progressive in the last two years)...I was ignoring the tremor through most of it...it was a none issue (until it became one).......but no matter how I had prepared myself to hear MS, had figured out how I would deal with it when it was finally figured out; how I had decided which medication I'd use to fit into my life (because it would have to fit into MY life, not take it over),,,No matter how prepared I was, how I'd gone through the stages of grief all the way to acceptance (when they told me it was possible MS I didn't know that that wasn't almost a diagnosis)

No matter what....nothing could make MS there that wasn't....and nothing prepared me to hear "You have Dystonia and Parkinsons".......I didn't know much about it...didn't know much about the medication (except for what little I knew to give it to patients during nursing school med passes)....and though I learned a lot in my quest to accept the cards I thought I'd been dealt...it was a lot of wasted energy...and anguish...and frustration.

Now....when the time is right..I am doing what must be done to go through those stages all over again....trying to gain acceptance of what is actually happening in my life.

So for today.. I am chosing to accept..maybe fight some (but that is sort of contrary to acceptance)...and I am choosing today to learn about the new me in this new journey in life.

~~~Trembly

#42 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,229 posts
  • LocationSeattl, WA

Posted 24 August 2013 - 08:52 PM

Thank you for sharing, Trembly. I am a firm believer in the necessity of allowing the grief process to happen without getting stuck at any one stage for too long. It eventually leads to acceptance of what is, which is the only way I find peace. xoxoxo
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#43 sarahjo

sarahjo

    Advanced Member

  • Members
  • PipPipPip
  • 193 posts

Posted 24 August 2013 - 10:24 PM

Christie, I do understand where you are coming from, I am just saying that we don't have to basically yell at ppl on here, explain your position, Yes, and there has been a few times reading post I scratch my head and wonder what is someone talking about, but my point, don't let others posts make you mad and mess with your day, or bigger than that your WELL BEING! you know I pray that the ones that are on here that are just searching for answers don't feel that those of us that are struggling everyday, are just as judgmental as those out in the world outside of this forum. I do hope this comes out like I am meaning it to. Christie, I read many of your post and you are very wise in this STUPID disease so please don't think me as condemning anybody, and especially not you. I am just one to try and put my feet in others shoes trying to understand where they are coming from, I just remember trying so hard to understand what in the world was going on with me and others couldn't see it or even think this was possible for Me to be going through this, yet why not me, am I that special that I don't need to suffer, or have anything wrong with me? It sucks not being understood, or listened to, please take this as it is intended not as an attitude, or as a lash back, that is not my intent now or ever. I have the most utmost respect for everyone on here because just when I thought I understood what was going through and BOOM something else hits so here we go again. Bless you all, and good night

#44 Sean

Sean

    Advanced Member

  • Members
  • PipPipPip
  • 71 posts
  • LocationNE US

Posted 25 August 2013 - 07:11 AM

I am not completely disabled yet. But I feel like I can't do my job if these symptoms don't improve. I always thought that my employer, a big private university by the way, could fire me if I became disabled. Am I missing something in the US laws?
I have been a very loyal and extremely productive employee for over 15 years now. I am a full time professor by the way. Am I panicking and worrying for nothing? If I can't teach any more because I am too slow or my mind is not as sharp as it used to be, will they fire me? Please tell me they can't and I will be the happiest person with PD in a long while.

Hello Saad,
So sorry that you are experiencing such angst. I'm in my early forties and was officialy, via DaT Scan, diagnosed within the past 8 months but have been under treatment for PD by an MDS for the past 11 years.
You mention you are a full-time professor at a large private university...surely, after 15 years as a productive employee, you would be tenured. Is this the case? I certainly do understand your fears of how your health issues may hinder your ability to properly teach which then causes your fear of losing your job, wife, kids, dog, friends, family, etc. Now, I also understand how PD presents itself to each of us in various manners. For instance, I've never experienced numbness in any of extremties. Instead, in addition to a slight "pill-rolling" tremor in my left hand, the only other symptom I had was a slight pain in my neck and shoulder on my left. Well, the tremor worsened and I awoke one day thinking I was having a heart attack due to the extreme pain in my left arm and shoulder/neck. No heart attack, no pinched nerve. Referred by my GP to a neurologist who suspected PD and sent me to an MDS for blood work and MRI. Slowly, but surely, she narrowed the option and diagnosis of YOPD.
I, too, am a tenured professor, I teach at a private and reputable law school in the northeastern area of the U.S. After telling my family of this news, I next felt the need to tell my boss. Was I in fear of losing my job? No, you see, I have tenure...tenure based, like you, on a history of hard work. I can still think...it just takes me a bit longer now and processing the information from my brain to my mouth is, at times, an adventure. But you'll adapt...trust me. You'll rely more on your colleagues and adjuncts and your Grad teaching assistants. Your boss, by law and hopefully by compassion, will reasonably accomodate you so you can continue to teach until the day comes that PD won't allow you to be an effective teacher, lecturer, or author. But, who knows, that could be 25-30 or more years from now.
We're all in this together, my friend. Listen to your doctor, and make sure you have one you trust will listen to you and respect you as the man you are and not just another patient chart. We, with PD, have much more control over our lives as we think we do!
Take care,
Sean

P.S. Even if you are not tenured, in the U.S. we are protected by the Americans With Disabilities Act. Your position is safe as long as you can perform the basic aspects of your job even if doing so requires reasonable accommodations on the part of your employer. When I was diagnosed, I first sat with my Director of Human Resources and asked for voice-recognition software for my PC and laptop. I also asked for an ergonomically better chair and keyboards for both computers. These are all reasonable accommodations that are relatively inexpensive. The HR Director then called for a meeting with my Dean and me to "break the news" so to speak. My accommodations were discussed only by my request. As time has passed, I've been able to speak directly with my Dean regarding my "needs" in order to remain "of value" to the department and the university.
If I can do it you can do it!

#45 saad

saad

    Advanced Member

  • Members
  • PipPipPip
  • 41 posts

Posted 25 August 2013 - 07:55 AM

P.S. Even if you are not tenured, in the U.S. we are protected by the Americans With Disabilities Act. Your position is safe as long as you can perform the basic aspects of your job even if doing so requires reasonable accommodations on the part of your employer. When I was diagnosed, I first sat with my Director of Human Resources and asked for voice-recognition software for my PC and laptop. I also asked for an ergonomically better chair and keyboards for both computers. These are all reasonable accommodations that are relatively inexpensive. The HR Director then called for a meeting with my Dean and me to "break the news" so to speak. My accommodations were discussed only by my request. As time has passed, I've been able to speak directly with my Dean regarding my "needs" in order to remain "of value" to the department and the university.
If I can do it you can do it!


My university does not have tenure. So job security is a big issue for me. I think I can still manage to teach for a few years. Maybe the medication will get me another 5 to 10 years. I don't know how my disease will be progressing. I just hope it will be slow enough to grant me 10 more years. I have saved enough money on a 401k to be financially secure and let my family outside of any financial needs. This is my hope and my biggest worry. If I become completely disabled and chair bound after that. I wouldn't care less. Give me a good book and I am happy.

#46 christie

christie

    Advanced Member

  • Members
  • PipPipPip
  • 463 posts

Posted 25 August 2013 - 09:45 AM

Christie, I do understand where you are coming from, I am just saying that we don't have to basically yell at ppl on here,

I like to think of this virtual place more as a community than a "forum". I like to think of us as friends not just patients (with or without PD). And we all know there are times in a friendship when yelling is more in order than hugging. There are times a friend must say: "You are heading to the wrong direction. Snap out of it" , instead of : "Here is my shoulder for you to cry on".
English is not my first language !

#47 sarahjo

sarahjo

    Advanced Member

  • Members
  • PipPipPip
  • 193 posts

Posted 25 August 2013 - 10:22 AM

agreed! Christie, have a good day

#48 invisable

invisable

    Advanced Member

  • Members
  • PipPipPip
  • 92 posts

Posted 25 August 2013 - 09:09 PM

Good point Christie, that is what you basically said to me and believe me I hope you are right!

btw - Are you a neurologist/MDS?

PM me if you'd like to answer me that way, or I understand if you prefer not to answer at all.

Edited by invisable, 26 August 2013 - 11:06 AM.


#49 christie

christie

    Advanced Member

  • Members
  • PipPipPip
  • 463 posts

Posted 27 August 2013 - 04:29 AM

Thank you sarahjo and invisable...

I am a pathologist. But nobody (doctor or not, neurologist or not)can diagnose anything over the internet. We can all try make helpful suggestions, exchange information, share our fears and thoughts. but nothing more. Invisable, I hope you don't have PD. As a patient I don't think you have it. But only your doctors can rule out PD. Or any other disease.

I also know, I understand that right now the only thing you want is a diagnosis. We've all been there. Not knowing what you have can be agonizing. But what I do know now, as a patient with PD and not as a doctor, is that the diagnosis of PD is no ticket to bliss. "Now I can sit back and relax cause I know I have PD". No, definitely not.

Three years ago I didn't know what I had. I had done every test known to man and still no diagnosis. If everything was normal why was I feeling like my body was failing me? At the neurologist's office I felt like a crazy person. I could almost hear the inevitable "it's-all-in-your-head-diagnosis in my head. And I hated it. I almost wanted to blurt out "Please don't tell me i'm crazy". And then something crazy did happen. But it wasn't me. It was my neurologist telling me I had an old people disease. Parkinson's? Seriously? Like a puzzle coming into place, my medical mystery was solved. Everything made sense. At last. Have to admit I was relieved. But if you asked me NOW, three years later? NOW that PD is stealing my life from me, day by day? If I could go back to that neurologist's office what would I wish NOW? What would I blurt out to my doctor? "Please tell me it's all in my head. Please don't tell me I have PD. Please tell me I can still have a normal life". I would take not knowing over PD any time. IF that meant I could have my old self back.

In some cases of patients with non-specific neurological signs and symptoms no definite diagnosis is ever made despite meticulous investigations. Some symptoms disappear or never evolve further for no apparent reason. And that's surely NOT the worst thing that can happen to you.
English is not my first language !

#50 saad

saad

    Advanced Member

  • Members
  • PipPipPip
  • 41 posts

Posted 27 August 2013 - 07:18 AM

Christie

I am not actively seeking a PD diagnosis. All I can see is that I have every symptom linked to PD.
1. Pronounced decreased sense of smell
2. Muscles tense for no reason. So much so sometimes I can't bend to pick up any object on the floor
3. I have to tense my biceps enormously to gain fine motor control.
4. I have lost dexterity in my left hand.
5. I still walk, but much slower than before.
6. I get dizzy if I walk a little or when I stand
7. I can't follow a straight line
8. I can't sleep. I have to take extremely powerful drugs to get a few hours of sleep.
9. I wake up more than 5 or 6 times during my drugs induced sleep.
10. My tongue is constantly pushing against my front teeth. I can't help it.
11. I can't remember much.
12. Places like Walmart make me dizzy and confused
13. I get cramps in my leg when I drive
14. I am constantly fatigued
15. I don't do much. Nothing is exciting enough to do.
16. My left hand feels numb
17. I get funny sensations in my legs at times
18. I had several episodes of tremors that come and go.
19. If you take me on a car drive and start turning left and right. I get completely lost.
20. I feel depressed
21. I had multiple nocturnal panic attacks that landed me in the ER
22. I need to pee all the time.
23. I drink a lot
24. I sweat a lot.

If these symptoms are not indicative of PD. Then it's something more exotic and neurotic.

Edited by saad, 27 August 2013 - 10:31 AM.


#51 christie

christie

    Advanced Member

  • Members
  • PipPipPip
  • 463 posts

Posted 28 August 2013 - 03:36 AM

Saad, most of the these symptoms are non-specific and certainly not PD-specific. They do not point NECESSARILY to PD. The diagnosis of PD is NOT based on clinical symptoms, especially not on any non-motor symptom such as depression, anxiety, insomnia, dizziness, and so on. Mostly because the non-motor symptoms of PD are not seen only in PD but also in several other diseases/conditions. Half the population has some of these symptoms and does not have PD.The diagnosis of PD is based solely on clinical SIGNS. Objective clinical signs strongly suggestive of basal ganglia dysfunction, as documented by an experienced neurologist/MDS. The diagnosis of PD (as of any other disease) is based on specific, strictly defined, evidence-based diagnostic criteria.

UK PDS Brain Bank Criteria for the diagnosis of Parkinson's disease
http://www.gpnoteboo...411172747571500

Diagnosis of a parkinsonian syndrome
Bradykinesia and at least one of the following:
• muscular rigidity
• rest tremor (4–6 Hz)
• postural instability unrelated to primary visual, cerebellar, vestibular or proprioceptive dysfunction

Supportive criteria for PD


Three or more required for diagnosis of definite PD :
-unilateral onset
-excellent response to levodopa
-rest tremor present
-severe levodopa-induced chorea
-progressive disorder
-levodopa response for over 5 years
-persistent asymmetry affecting the side of onset most
-clinical course of over 10 years


What does all this information mean? Basically, it means that if a patients does not have bradykinesia on clinical examination, and more specifically, a specific pattern of bradykinesia, which is not just slowness, but slowness with decrement and degradation of repetitive movements, any diagnosis of PD cannot be established. Even if a patient has ALL the non-motor symptoms of PD. If he doesn't have bradykinesia, he can't be diagnosed with PD. And even if the patient has bradykinesia he must also have either muscular rigidity (this can be evaluated only by a physician) or a rest tremor or postural instability (postural instability is a late feature of PD: you don't expect to see this in the early stages). After documenting all these signs a clinician must observe the clinical progression of symptoms (often for months or even years) AND the response to dopaminergic drugs. Then and only then a definite diagnosis of PD can be rendered.

Hope this information helps.

Keep us posted Saad! Best of luck with finding an answer. hope you will feel better soon.

Edited by christie, 28 August 2013 - 03:37 AM.

English is not my first language !

#52 saad

saad

    Advanced Member

  • Members
  • PipPipPip
  • 41 posts

Posted 28 August 2013 - 07:04 AM

I actually have bradykinesia with slowness and degradation of repetitive motion on my left had. If I tap my fingers fast, my muscles get tired fairly quickly and slow down.




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users