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Shameful - weeks, or months, to get an appointment to see a neurologist


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#41 christie

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Posted 16 November 2013 - 06:47 PM

Rebecca, you are more than welcome here. The purpose of this forum is to provide support for all PwP (and related diseases) and their families. We all try to do that, the best way we can.


English is not my first language !

#42 metfan31

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Posted 16 November 2013 - 07:21 PM

You know I was thinking after I wrote my last post
one reason I don't see many in here struggling with these mental issues is because they can't get in here and put their thoughts to paper
-so to speak. Unless they have someone advocating for them and trying to learn about this I wouldn't see them. There must be lots of people
who would benefit from a forum but they can't mentally or physically take part in one.

Oh gosh I hope my issues with my Dad aren't making the YOPD-ers feel bad.... Maybe I shouldn't post in here, what do you all think ? Maybe I should delete my posts ? Sorry I never thought about it.... gulp.....

Thanks to all of you!
hugs,
Rebecca


I don't think the cognitive issue of PD are that cut and dry. Like other symptoms there are better times and worse times. Besides I hope that when I reach a staget where my abilities are so diminished my children will be old enough to contribute and caring enough (like you for your father) to want to.

As one of the younger members of this forum and still in the early stages of PD I think I can speak for PW YOPD. We can choose to read the post we want to read. Often I will skip the ones talking about incontinence and constipation, and generally over things that perferably happen in the bathroom. Not that I have a weak stomach, or can't handle the idea of those symtoms. In fact I have had early signs of those myself. But really I find that unpleasant enough that I try not to relive my own yet live someone else ordeal. Point being I can censor the forum well enough to take in what I need when I need it. Under no circumstance should you feel the need to censor yourself or not ask about (or gripe in some case) the concerns with your fathers issues. Also YOPD comes on differently than traditional PD, and all PWP don't get all the same bag of symptoms. Hopefully that makes sense, point is post what you need to post. I for one will use my cognitive ability to help all PWP with my story, opinion, and tips for handling PD for so long as I am able to read and post. It might be one of the few positive things for my PD can do for others. Also there is no sense in fearing my future with PD as tomorrow I could get hit by a bus, I must handle each day as it comes, and perhaps one day I'll awake to learn of a cure instead. If you really feel uncomfortable talking (posting) about challenges of PD to those of us with it, there is a Caregivers section to this forum. I for one rarely read those posts as I am not a caregiver or in need of one, and feel I don't have much to contribute there. Hopefully with all I said you know I am not suggesting you should only post there. Remember your questions and input is always welcome.

Richard

#43 Rebecca2z

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Posted 17 November 2013 - 02:39 AM

Thanks Christie, I sure have gotten some amazing support in here, thank you !

 

Richard, Your post has reminded me of something very important and that was your statement  "Like other symptoms there are better times and worse times"  Important to remember this especially when your in the thick of a bad day.

 

I also appreciate your point about people can choose to read a post or not. I am in a forum for my own health issues and many of us are at different levels, sometimes I don't read the ones that are scary, sometimes I don't want to know what could happen. My main disease is so rare there really isn't a forum for that but I am in a lupus one.

( I have APECED - other wise known as appies.. lol, Immune Deficiency and Lupus - ) So yes I too pick and choose what I read in 'my' forums. (But still I would never want to bum anyone out)

 

 I haven't gone into the care taking section YET, because, I am not care-taking at this point. And well my father is 3,000 miles away and I am working on getting him good medical care and trying to learn about the ups and down of PD to help him fight.   I wouldn't be any where near where I am in my understanding of PD without all the wonderful people on this forum. It's a journey and I truly appreciate you all allowing me to walk it with you.

 

 I will say there has been a positive improvement in my Dad, he's not as depressed ~ at least on this day, so the lexapro maybe is finally doing something. But just to remind everyone my father is 84 years old and as someone mentioned to me in another post he has had a wonderful life with many many good years. and I expect he will have a few more still to come ~ especially with your help !

 

Thank You Richard for your kind and thoughtful post.
Hugs,
Rebecca


Edited by Rebecca2z, 17 November 2013 - 02:48 AM.


#44 Donald Ennis

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Posted 19 November 2013 - 04:21 PM

Rebecca,

 As was previously stated, you are welcome here. We all have diffrent symptoms and back stories, We all deal with these issues diffrently. The mental issues associates with PD vary from person to person. I'm in my Early 40's and have very few cognative issues as yet. My father has some cognative issues, and my mother, who was DX last year in her 70's is in better shape then both of us. yet we can all learn something from other's experiences. I for one am glad your here, the more voices the louder we can make a noise that will effect change.


Edited by Donald Ennis, 19 November 2013 - 04:26 PM.


#45 Rebecca2z

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Posted 19 November 2013 - 05:35 PM

Thank You Donald for your kind post. I am so happy your not dealing with any of the mental issues and I think a lot of my fathers issues has to do with the fact he is 84.

I bet with your family situation you must be thinking PD is inherited, you all must be a wealth of information and support for one another.

 

Thank you again for taking the time post and I think you are so right the more voices = change !

Hugs,

Rebecca


Edited by Rebecca2z, 19 November 2013 - 05:36 PM.


#46 Donald Ennis

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Posted 20 November 2013 - 02:35 PM

Rebecca,

 The question of genetic PD comes up with my family often, however I am the 5th of 8 children and the only one of my siblings with symptoms so far. If it is genetic the odds are I got this from my Dad's side, which we don't know alot about. Of all cases of PD there are only about 10% that are known to be genetic, if DXed with YOPD (Before age 50) the odds change to about 60%, with both I and my Dad having YOPD the odds are pretty good that we have a genetic form of PD but it changes little. We have had more researchers approach us when they find out there are 3 of us in the same family in 2 diffrent generation with PD, I have had more blood drawn and sent to research labs then I can count.

 

I would suspect that your father's advanced age probably does play a big part in his mental status.



#47 Rebecca2z

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Posted 21 November 2013 - 02:14 AM

Thanks for your post Donald, I really was thinking you must have doctors or researchers wanting to look into yours and your families DNA.

I think my fathers mother (my grandmother) had PD, but it was never dx. She lived to be 105 though ! Of course I am hoping it's not genetic, I have enough

poor health and mine is related to DNA, I have 4 siblings and 3 of us have immune issues.

I guess we all have some kind of monkey on our backs !

I was wondering how young a person has to be in order for the PD to be called YOPD, thanks for that info.

Be well !

Hugs,

Rebecca


Edited by Rebecca2z, 21 November 2013 - 02:14 AM.


#48 christie

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Posted 21 November 2013 - 07:13 AM

 

I was wondering how young a person has to be in order for the PD to be called YOPD, thanks for that info.

 

 

"The term YOPD refers to patients with a PD onset between the ages of 21 and 40,[1] although subjects younger than 50 years might be considered as having early onset PD" http://www.ncbi.nlm....pubmed/22180646

 

The arbitrary definition of "young onset Parkinson's disease" for  cases of  idiopathic Parkinson's disease beginning between age 21-40 years was proposed by Quinn et al in 1987.  http://www.ncbi.nlm..../pubmed/3504266


Edited by christie, 21 November 2013 - 10:36 AM.

English is not my first language !

#49 Donald Ennis

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Posted 21 November 2013 - 07:37 AM

Nice definitions on that one Christie.  The only problem I see with those ages, (21-40) is that we are looking at onset of symptoms and not an the actual Diagnoses. As an example for myself, I was DXed in April of this year, at age 42, however looking back I can remember thing from years past that I could say where early symptoms. Since the definition is based on the onset and not the DX of PD, it is extremely arbitrary. I consider myself Young Onset as does my doctor.


Edited by Donald Ennis, 21 November 2013 - 07:39 AM.





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