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New normal

Stage 3 & 4. Candid discussion. ??

115 posts in this topic

There surely is all the world of difference in how depression used to be viewed as to how it is viewed now.  There is so much more known, and so much more shared so that people understand it better--especially clinical depression caused by an imbalance of chemicals in the body.  Treating it with the meds to help the body is often likened to treating diabetes with medication.  Same thing--just different organs of the body.

 

It's beyond me why so many (especially in the older generation, but often in other generations as well) do not seem to care to read all the information that is readily available about so many things.  

 

I'm sorry you went through a difficult time back when you were in the midst of a debilitating depression.  It's so hard when feeling free to share what we may be going through and then to have someone close us down. 

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YOU HAVE TO CHOOSE TO CHANGE

By Rick Warren--Aug. 10, 20

 

08-10-16-lifes-healing-choices-you-have-                                                                                                              

 

“Throw off your old sinful nature and your former way of life, which is corrupted by lust and deception” (Ephesians 4:22 NLT, second edition).

 

Change requires making choices. It’s not enough to dream of changing. It’s not enough to desire change. In order for you to change, you will need to make a decision. You must choose to change.

 

Change is intentional. Are you going to be any different in six months? Are you going to be better a year from now? Are you going to be healthier, stronger, and more mature? Are you going to be happier? Are you going to be less in debt?

 

Are you going to be more like God wants you to be?

 

I can tell you the answer right now: It will only happen if you choose to change, because it isn’t going to happen accidentally.

 

It requires a choice.

 

A lot of times we think we’re waiting on God to change us. No! God is waiting on you. He’s waiting on you to say, “Yes, Lord, I’m willing to make these changes.”

 

We have to make intentional choices in order to grow. There is no growth without change, there is no change without loss, and there is no loss without pain. If you are going to grow, you will have to change, and change means you let go of some old things in order to grab hold of some new things.

 

It’s like swinging on a trapeze. The trapeze artist swings out on one bar, and then he has to reach out and grab the other one. At some point, he’s got to let go of one to grab on to the other, or he’s not going to make it to the other side. If he thinks he can hold on to both, what happens? He gets stuck in the middle, and he’s going down.

 

Some of you are stuck in the middle, and you’re going down because you haven’t let go of the old patterns, the old habits, and the old ways of thinking. You have to let go of your old ways.

 

The Bible says, “Throw off your old sinful nature and your former way of life” (Ephesians 4:22a NLT, second edition). In other words, let it go. Those old habits, those old hurts, those old patterns, those old sins in your life — let them go. The Bible says to throw them off and trust that God is working in you “to will and to act in order to fulfill his good purpose"  (Philippians 2:13b NIV).

Edited by Linda Garren
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PD-related depression may be:

 

1)Situational/reactive depression, occurring as a reaction to the diagnosis and the significant challenges brought on by a chronic progressive incurable disease

2)Clinical depression, directly resulting from the disease itself -more specifically, from an imbalance of various neurotransmitters controlling mood and behaviour-other than dopamine- which are also dysregulated in PD.

3)Situational or clinical depression not related to the PD diagnosis or the disease (simply coexisting with PD). Remember that PD patients can get depressed for other reasons (death, divorce, etc), and that they are particularly prone to depression, due to their faulty brain chemistry...

 

From a therapeutic point of view, it is important to distinguish between reactive and clinical depression, because the latter should be treated more aggressively, with a combination of measures including counselling, exercise, lifestyle changes AND drugs.

 

The stigma associated with depression and almost all mental diseases is the reason why some patients prefer to be diagnosed with a chronic, debilitating and incurable disease like PD or multiple sclerosis than with a mild and treatable psychogenic disorder, such as anxiety or depression.

There must be a depression/anxiety that comes with the on/off state. One of the greatest benefits of Sinemet when I first started taking it was improvement of mood. Now my mood flucuates with on/off states.

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I don't believe depression is just something women with PD deal with. My husband also experiences depression. His depression has not been severe enough, thankfully, to be all encompassing. That isn't exactly the right word but I'm trying to say that even when he has felt depressed he has still been able to continue being productive at work. I am the one who notices it in him the most. He deals with it periodically, not as a constant thing but sometimes it doesn't take much for him to get in a "funk". He is sensitive and a bit emotionally fragile.

 

Depression is not something to take lightly and there is still so much that the general population does not understand about it. Many are so reluctant to use medication to treat it and yet many of us also know people that have sadly taken their lives due to depression. I agree that medication should not be the only thing used to treat it. Counseling, diet, exercise are a few things that come to mind that should be part of a treatment plan but sometimes it isn't possible for the affected person to make those changes for themselves until they have been on medication for a while. The very nature of depression renders one unable to help themselves, if untreated. Mild depression is a different thing as it is more likely situational. Situational depression may just require some patience and encouragement from people that are close to the affected person. It will pass, whereas clinical depression is more than just an episodic event. So, I just explained my personal understanding, but I am not an expert, but rather one who has lived in the darkness in the past. Thankfully I got treatment and medication was a part of the treatment. That was several years ago, before my husband's diagnosis. 

 

We are aware of depression being linked with PD. I wonder if it is a result of having PD? Who could blame a person with a progressive, incurable disease for being depressed? Does depression exist organically in people with PD or as a result of having PD? Dose anyone know the answer to this question? In a way, it doesn't matter what the answer is. It's sort of a chicken or the egg question. It still needs to be identified and treated but it does seem like knowing why it is there could be an important thing to know, especially because of the stigma surrounding depression that still exists in our society.

I can tell Ashwagandha works wonders for PD depression and anxiety.

Edited by waruna01

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This is an interesting subject.   i tried cutting back on the midday dopamine by a quarter tablet, which did seem to mitigate the dip in spirits,  but actually felt the rigidity in my arm and leg more keenly that afternoon.  and another day i felt the sadness before that dose anyway.  i read somewhere that dopamine is a pleasure hormone, so it makes sense that a dearth of dopamine is less pleasure.   my neurologist says the timing of the dip means it's drowsiness from the sinemet, not depression.  perhaps that's semantics. My recent trips to Chicago and Vancouver Island involved a lot of socialization and that seems to distract me perfectly and the dip was skipped entirely.  i think those of you that recommend we ponder less and do more are on the right track.  i am overly self-absorbed and reading every signal anxiously.  i am fortunate in that there is enough distraction in my life these days to help me snap out of it....in the no stone left unturned department i am definitely going to order some Ashwagandha!

     now that i have experienced it my heart goes out to all of those that suffer or have suffered from clinical depression...what a brutally crushing disorder!  Thank you so much for your input.

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Nn where are you? I hate when pwp's disappear for weeks! Is this our future falling under the radar? Twitch

 

Assuming you're on your computer, not your phone, if you mouse over anyone's user name it will tell you when they were last online.  NN was on as of 12:58PM today (I assume that is Pacific time, as that's where I'm located).  From your phone you can probably tap the person's screen name and it will take to their profile where you can also get that information.

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Oh happy day...I just kicked apathy in the rump....oh YEAH...drove BIG BLUE (Harley Trike) for 2 hours today!! Best Valentine gift ever!

 

Shows there really IS sunshine behind all those formidable clouds!

 

Ya just have to keep swimmin' !!

 

NN

 

(PS: i've bn posting some pretty grim notes lately. The new reality is you CAN move on even in rough waters....those who are not "bikers" will not understand...those who are will know some "automatic" reflexes endure .... I was in traffic, and county roads....all reflexes and cognitive were working.....all defensive techniques and responses were there....it's not over til the fat lady sings....lol....and we DO get strange looks with disabled plates and our two canes on board! Lol....only negative was getting all the bugs off my teeth from smiling so much! Lol....)

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Oh happy day...I just kicked apathy in the rump....oh YEAH...drove BIG BLUE (Harley Trike) for 2 hours today!! Best Valentine gift ever!

Shows there really IS sunshine behind all those formidable clouds!

Ya just have to keep swimmin' !!

NN

(PS: i've bn posting some pretty grim notes lately. The new reality is you CAN move on even in rough waters....those who are not "bikers" will not understand...those who are will know some "automatic" reflexes endure .... I was in traffic, and county roads....all reflexes and cognitive were working.....all defensive techniques and responses were there....it's not over til the fat lady sings....lol....and we DO get strange looks with disabled plates and our two canes on board! Lol....only negative was getting all the bugs off my teeth from smiling so much! Lol....)

I gotta add....I have had gout in big toe for a couple of weeks...so swollen I cd not wear my biker boots. Yeah, it hurt...but big news is after icing last night...this am swelling is down...and I can walk on it....go figure! I am beginning to believe adrenaline and seratonin works better than any rx.....just sayin'

 

NN

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Dr.Low hardly ever mentioned a clinical diagnosis.His focus was helping people regain their nervous health.People get nervous aliments because they are overwhelmed with stress and lack insight on how to help themselves.

For many years i had chronic nervous symptoms,now I have no chronic problems in this area.Of course I have PD but there is no blame for my fate.I visit many people who still have chronic symptoms ,basicly because they never were given or refused this help.

A simple way of using this method is when you are in what is called the after effect ,look outside yourself for the other man"s reaction.

Changing your thoughts and learning to control impulses is the path for nervous health.

PD is so much less of a discomfort knowing you have peace of mind(mental comfort)

Have a nice day

john

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"Mental Health Through Will Training". Abraham Low.

 

John references this book all the time...and I support him fully on its message. Bought the book...and because of apathy or whatever...I've not finished it. However, it is a must read for someone who wants to obtain control of their life. I apply its teachings every day...and wish I had discipline to finish the book.

 

Ya have to be open minded...and patient. Written in 1950 before current psychological and psychiatric modalities, it can be dismissed as antiquated....OR, depending on your frame of mind, it can be viewed as a pure virgin method of controlling our mind and emotions without pharmaceuticals. It is stunning Dr Low writes this during a time when electric shock therapy was being promoted. At times, it has been confused with religion or cult like thinking. Not true.

 

In 1950, he was probably viewed as an "outsider". His doctrine describes methods of changing thought processes. He says we can literally change disease progression and reaction to environmental stress by just changing our perception. You hear John often say .."if someone else saw thi...". It is one of the methods to disengage your own emotional quotient from the situation...and it removes otherwise distressing emotions you associate with the incident.

 

Low's method grew into a movement that continues today. There are seminars and study groups across the nation that perpetuate his teachings. Just as when he introduced his book, his opinions can easily be overshadowed by the numerous psychological "self help" books on existential mediatation...etc. Dr Low's thinking is the basis of most of the current trends. It is so simple that it is overlooked by authors and publishers who are promoting "flavor of the month" thinking.

 

John is succinct....but don't dismiss the value of his post because of its brevity. I read from his posts over the years that he is an avid deep sea/lake fisherman with his own boat and continues regardless of his dystonia. I am guessing dystonia is one of the limiting factors that keep his posts short. (Just like my mania that keeps my posts long...smile)

 

John..I apologize if I have not explained Dr Low correctly..but I guess that is what it is all about...we individually gain what message Dr Low has for us.

 

Thank you, John, for taking the time to help others...you are so right...if people could glean even a small portion of Dr Low's writng it would help many on this forum.

 

Keep on swimmin', John...it is remarkable you give of your special time to help PWP.. i listen carefully to your every post!

 

NN

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Hi guys....

 

Back to the topic of this thread.3rd stage PD...I will share some personal info that in liklihood is premature. However, regardless of outcome....I am experiencing third stage...which is simply the same emotion that consumes us in first and second stage....fear of the unknown and the need to tell someone who is not closely associated.

 

So....i,have been through a lot of tests...and I will learn results next Monday. I have researched a lot...we all know that feeling...and accoding to what I have read, I really believe I know the dx. Hmmmm...have we all been there?

 

I have not shared information with anyone, even DH...and being the "talker" I am...it is very hard to keep anything inside. I keep going back to Dr Low as referenced in the previous loooong post and trying to disregard anything I dont know for sure...hmmmm, sound familiar to you?

 

The results of tests I know...the mention by my neuro he believes my problem lies at the base of my skull...and the symptoms I experience...I think the dx may be MSA...Multiple System Atrophy.

 

I keep thinking I shouldn't write this until results next week...then I think...hmmm...this is what we all experience...it is just at a different level. Like grandparents still experience dramatic life transitions...even tho society focuses on teenagers and their hormones...we ALL are walking down the same path regardless of where we are..

 

Yep..and the need to tell SOMEONE is gnawing at me inside...but...this forum and the strong PWP's counsel has taught me to stay focus...like Dr Low and John would say...and patiently await the outcome.

 

My post is not to discuss the dx...that will come Monday..hopefully...my purpose is to simply relate my emotions 8 years since obvious symptoms appeared... this thread is meant to be a safe place where we can share our fears...and be accepted.

 

So far cog/psych tests show more impairment, sleep studies show zero REM sleep time, ortho static hypotension is off the charts...literally.....lung exam is norm...stopping breathing at night is not coming physically, but from PD.. high Bp and low Bp does not reflect cardiac change...all autonomic systems are malfunctioning noticeably enough to impact daily living. Added to the big clue is dr referencing low brain stem.

 

All of this would explain why I have had 5 or 6 negative DaT scans.

 

Enough...i think I have had my "fix" of whining....we will know soon...should we prepare by speculating? Should we put everything on a shelf and create our denial walls? Should we tell family and friends our fears in order to gain some spotlight time?

 

Or do we write in the forum to strangers in social media......hoping our situation can bring some kind of help to others....

 

Sorry for the length...will tell you status on Monday. I take the risk of looking very foolish and self obsessed. I just needed to "talk" and hopefully I AM self obsessed and way off the mark...that would be a good thing.

 

It is what it is...

 

And I wll keep on swimmin'

 

NN

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The results of tests I know...the mention by my neuro he believes my problem lies at the base of my skull...and the symptoms I experience...I think the dx may be MSA...Multiple System Atrophy.

 

 

So far cog/psych tests show more impairment, sleep studies show zero REM sleep time, ortho static hypotension is off the charts...literally.....lung exam is norm...stopping breathing at night is not coming physically, but from PD.. high Bp and low Bp does not reflect cardiac change...all autonomic systems are malfunctioning noticeably enough to impact daily living. Added to the big clue is dr referencing low brain stem.

 

All of this would explain why I have had 5 or 6 negative DaT scans.

 

 

Datscan is typically (in the overwhelming majority of cases) positive not only in PD but also in PD-plus syndromes.

 

So, a series of negative Datscans may strongly argue against the presence of degenerative parkinsonism in general (be it typical-i.e. idiopathic PD- or atypical- i.e. MSA and other PD-plus syndromes).

 

Nothing is 100% accurate of course. I just wanted to point out that, theoretically, chances of a MSA diagnosis in a patient with negative  Datscans is very very small.

 

Good luck NN!!

 

Keep us posted on the final diagnosis!

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Thanks, Christie.

 

My neuro is exremely pro DaT scan. He supervised the initial placement of DaT at Mayo hospitals and clinics several years ago..

He has been chief of neuro departments as well as a long history of private practice in Movement disorders. He leads seminars etc. i am grateful to have him.

 

I have supported PWP with negative DaT scans for the very reason you state. In fact, DH has a negative DaT scan.

For us to both have PD w/neg scans....is about .00001 per cent chance...(est).......so, I figure it is not impossible for me to achieve a

.0000000000001 per cent of having MSA...ya figure? My gosh...MSA itself is so very rare!!

 

On a side note, Christie...my grand daughter has a chronic debilitating disease called 4 H. There are less than a dozen in the world...she does not create myelin in her brain....theoretically she should be gone by now...they did not give her one year. She is now 7...compromised mentally and physically...but active. I think she still cannot swallow and is fed by a stoma in her stomach.

 

I just wish the odds were in our favor...the lotto would be our friend. :)

 

Thanks, Christie...it felt good just to share. It is an interesting read...if like me you enjoy such things...the relationship to sleep studies REM data with PD. Some studies report a high correlation of sleep disturbances....or abnormal REM scores....with PD...to,the extent that it may be a diagnostic precursor for PD. My pulmonolgist (once retired) said having no REM is extrordinarly rare.

 

Neuro came and observed ortho static table test cuz he could not believe factors....I dropped 20 pts in systolic and 40 points in dystolic...with only a table rise of 7 degrees...(dx boundaries at 10 & 20.) Yet I have no symptoms.

 

If just for curiosity sake, it will be interesting to hear results. On the reality side, the unknown is the same for all of us...we all face the same thing...which is the gist of my post....none of us is worse than the other because the sharp cliffs and falling boulders are ahead for all of us....we need each other.

 

Again, thank you for your thoughts.

 

NN

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Dear nn: I will pray that you are wrong, and that we will hear that you have garden variety PD. (Such a thing to hope for!) But feel free, at any time, to vent or worry or fret or rejoice here. We get it. We really do, and you are a most valuable member of this bizarre club. Best wishes, Adrienne

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NN,  Could you elaborate on the tests performed to dx MSA.  I surely hope that your gut feeling is wrong.  Thanks for sharing.  Gardener

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What's the point in having 5-6 expensive Datscans and then not believing the results?  If an expensive Datscan can not be believed, then what test could be believed? 

 

Worse yet, if the Datscans are correct and PD is ruled out, then the proper treatment is not being given.

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Gardener,

 

I appreciate your interest. I will elaborate when I know the end result. I don't want to get into a discussion that might confuse or misinform. I pry shd not have said anything...it has been almost a month of tests...so as I get close to the end zone I am feeling more nervous.

 

That is what I was speaking to...we all are facing the unknown ...no matter what "stage" we are in.....this last month reminded me that "newbies" feeling those first tremors...or the care giver seeing noticible rapid changes ...PD bonds us. This forum is an opportunity for comfort and healing. I really needed to get some release ...and my mailman would never understand..(smile)

 

To digress....as I've seen talents lessen...i've thought what if we had a choice...which one of our skills would we forfeit...which would we want to keep.. i find it so interesting that I can write......but can't talk well. My voice changes throughout the day...normal to soft...halting to long pauses...substituting words...the short circuited brain dictates which circuit gets what energy. THEN...I drive a HD trike for 2 hours! Go figure!

 

In no means did I start this thread for it to be a negative or bummer place to be...hopefully advancing PWP can discuss and share...and vent, as I did.

 

Thank you for your prayers...ya know...I have felt my own prayers answered and received strength...it is a different feeling when you are lifted by the prayers of others.

 

Thank you all for listening...and lurkers??? I am thinking of you also...

 

May we all be the best we can be....we all just have to keep swimmin' ...

 

NN

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There is one thing I dont understand about dat scans.Scientist tell us we don"t really show symptoms of PD till we have lost 80% of our dopamine cells.Now my one and only datscan which I really didn't want or need showed I had about 80%of my basal ganglia intact.According to the test Ishould show no sign of PD.Interesting who is right? According to my last evaluation I am rated moderate .

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What's the point in having 5-6 expensive Datscans and then not believing the results?  If an expensive Datscan can not be believed, then what test could be believed? 

 

Worse yet, if the Datscans are correct and PD is ruled out, then the proper treatment is not being given.

Patriot

I agree. A PWP told me that DaT scans can determine the difference between PD and essential tremor...that's it.

 

My neuro is such a proponent of the scans...he said, even if my FIVE scans are negative, the scan will eventually catch up to the PD dx. Lol...i laugh but he did not mean it as a joke.

 

PM, I am so skeptical of the data that I have cynically suggested medical reps and hospitals have to support the scans to negate the huge $ investment. DH has a neg scan as well.

 

With me, neuro MUST go with PD dx cuz I am so symptomatic... and up to now, very classic.. Medical have increased the PD spectrum to "Parkinsonism" because they are identifying subsets. MSA and PD+ have Parkinsoniism" traits but atypical components. So how do the diagnostic means keep up with increasingly new diseases.

 

Good topic...think we need a table and chairs for this one. (Smile)

 

Good to hear from you, PM

 

NN

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NN - Has Dr ever suggested a Flora Dopa Pet Scan to you?  If read by a very experienced "brain reader" supposed to be very accurate.

 

I can't get over 5-6 neg Dat scans and a neg for you DH too........that is truly (just about) unheard of from what I have read.

 

btw - I do understand the need to "speak" about things.......cannot keep things inside too long either.........and what better place to do it, but here.

 

Prayers for you.

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NN - Has Dr ever suggested a Flora Dopa Pet Scan to you?  If read by a very experienced "brain reader" supposed to be very accurate.

 

I can't get over 5-6 neg Dat scans and a neg for you DH too........that is truly (just about) unheard of from what I have read.

 

Is this the same scan you had done that came out negative? 

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Yes, but it is a bit complicated..........I was only 6 months into what the Dr called "soft symptoms."  The Flora Dopa Pet Scan can show false negs when done too early in motor symptoms......I recommended it to NN because she is years into her symptoms.  Although, one thing I forgot to point out is this scan is not always covered by ins, because it is not "officially" FDA approved for PD and some insurances consider it "experimental."  I had mine done in NYC, Dr. gave me a "discount" because I was paying out of pocket and charged me $3500, I had it done because, to be perfectly honest, I was having a nervous breakdown, so it was worth it to me to get an answer, only to find out a year later, false neg, because so early in symptoms. I was not told that at the time by Dr that wrote for this scan in NYC.  This (false neg) caused me to have another nervous breakdown.  No judgment please........"until you've walked in these shoes."  Can't afford another scan.

 

Every insurance is different, I have heard of some covering the scan.  It is worth checking out for someone like NN, having many years of motor symptoms and having so many (false) negative Dats.........just a thought, can't hurt to ask.

Edited by ellaangel2
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Even without getting the scan do you think it's worth a shot to see an MDS that you have never gone to and see what he/she says now since it's been a long time since you had it done and you feel so confident that you have PD so maybe you will finally get a firm diagnosis?

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