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New normal

Stage 3 & 4. Candid discussion. ??

115 posts in this topic

I am in 3-4 stage PD. A classification based on capacity to function independently. Stage 3-4 is seldom discussed.

 

There are many aspects of 3-4 living. To make it easier for topic search.....and to keep consistent...I suggest labeling posts with a topic including a hash tag. All posts are welcome, of course...structure may make this discussion easier to follow. Suggestions are:

 

# what stage am I in?

# cognitive

# emotions

# daily challenges

# medical advances

# medical disappointments

# tips and tricks.".works for me"

# strategy for coping

# medication issues

# diet and exercise

# social issues

# legal responsibilities

# care givers (CG) feed back and observations

# family issues

# social issues

# lessons learned

# hope, inspiration, success stratagies

#.venting

 

This are suggestions only. Please contribute ideas ti make this a successful thread. Anyone can develop a new #. This is a huge topic which needs a candid discussion. Personal debates should be avoided....as always, posters need to feel safe and not defensive. Everyone has their "truth" and deserve respect. Advice is welcome. Separating into paragraphs helps persons with concentration issues.

 

Keep in mind, anyone who feels uncomfortable may choose other threads.

 

Truth and reality prepare us for the future. I hope this thread is educational, pragmatic, and inspirational.

 

FYI: common abbreviations are:

 

PD: disease

PWP: people with PD

CG: care giver

Rx: prescription

Dx: diagnosis

MDS : Movement Disorder Specialist

DH & DW: dear husband, dear wife

Other abbreviations are found in the sections at beginning of the forum.

 

Hope this post will help some one.

 

NN

Edited by New normal
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# Cognition:

 

Folks: I'll start.

 

I've felt a slipping of cognitive processing for a long time. I have asked for advice on the forum and expressed concerns. Some people have bluntly told me, based on my posts, that I shouldn't be concerned as it is obvious I have no cognition issues.

 

I just had a second neuro cog test. I passed with an "A". I think I may have got an A+ if I hadn't talked so much and joked with the doctor. (Joke)

 

There is no exam that addresses my issue. The assessments are out dated and are designed to see who is on this planet...who is in orbit...and who lives out of the galaxy. PWP with cognition issues need to urge medical researchers to develop more definitve tests so we can isolate our weaknesses...identify strengths...and develop more rehab programs that will protect our intelligence while we still have some brain cells left.

 

I have an appt and must make this a short post...i will keep to my traditional posting and expand on this topic...but I wanted to illustrate the concept I' m trying to develop.

 

Hope this works..

 

Keep swimmin'

 

NN

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# Family issues

 

Denial: after three years of detachment since my PD dx, my kids are softening and are more tender to me. How did that happen?

 

One personal visit: seeing me in person is reality.

 

NN

 

 

( Folks...get the idea? Hope this is a project in the making...we can work together to make this a a useful meaningful thread for us...and all those lurkers who are dear to my heart. )

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NN:

 

Great idea, and beautifully thought out, explained, and organized.  Go, girl!  :-)

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NN  you are nowhere near  stage 4. I think most  of us with PD tend to overestimate the severity of our disease. If you asked your neurologist he would probably tell you you are stage 1-2.

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NN- Is it possible to be in "stage 3-4" and have a negative dat scan?  I don't concern myself with stages - don't really care what number they assign - more focused on what I'm able to do with optimized medication.  Rather than a number, it would be more descriptive if you could tell us what symptoms you're experiencing and how often you are not able to control them with medication.  Also, do you have other medical issues that contribute to your overall feeling that you are approaching a dependent state?  Gardener

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NN you are nowhere near stage 4. I think most of us with PD tend to overestimate the severity of our disease. If you asked your neurologist he would probably tell you you are stage 1-2.

I actually did the opposite - I mostly ignored my symptoms for years and was diagnosed @ stage 3. Still there, according to the neurologist. I walk with a cane, spend most of my day either sleeping or in bed or laying on the couch, have lost the ability to work, and scored very poorly on neuropsycological exams.

 

However, multiple near death experiences with diverticulitis, sepsis, a colon resection, and c-diff taught me there are much worse things than Parkinson's. That was a living hell for 6 months.

 

I've always figured most of the stage 4 and 5 folks don't have the capibility to post in this forum. I read about them in the caregivers forum.

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#. Social issues

 

Acceptance:

 

 

Well....hmmmmmm....I was hoping there could be an avenue for people who ARE in these stages to be able to speak without being dismissed.

 

Who is able to determine what stage someone is in? Why do active members of this forum literally JUMP on people who want to explore what is ahead for them? Why do we crunch a vehicle persons could use who are outside those who regularly post?

 

Why is it that people who are self sufficient literally close the door to those who are not? Why do many active members say they cannot go to support groups and "be around advanced PWP " because it is depressing? Why do we have 10's of thousands of readers and a handful of active posters?

 

This is not the site to,give your opinion regarding someone's personal assessment. PM is available for off topic discussions.

 

This forum currently is dominated by stage 1 and 2 persons.....where is the voice of stage 3 and stage 4?

 

Bigotry and prejudice come in many forms. This site is to be on issues ...not personal assessments of others.. Issues regarding transition to advanced stages is the topic.

 

I urge PWP in advanced stages to use this site...let others know the teuth about PD and how you manage your symptoms.

 

PWP who post on this site should feel assurred they can post without having to defend their status to anyone.

 

Again, this thread is about issues...not personalities.

 

I encourage posters who are now lurkers to participate...i miss you...you were active when I started...i want to,know how you are and your challenges. If ALS posters can continue to post on their forum when they are physically incapacitated...then I know there are PWP in advanced stages who can share their life with us.

 

NN

 

PS: This site is not about me. It is for the silent PWP who have no where else to be.....comprendez

Vous? And please use,hashtags so PWP with concentration issues can readily find their subject matter....not a rolling thread of personal editorials. Perhaps " # I dont agree with you" or "# this is a stupid idea"? Here's to new concepts, inclusion, and broadening the umbrella of this forum. ????

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# what stage am I in ?

 

I want to find the list of stages I can copy and paste so we use the same base when discussing issues.

 

The criteria I intend to use is a self assesment based on one's independence. It is not a clinical assessment. If someone can find that for us..that would be great. Stage 1 & 2 PWP can meet their personal needs...dress, eat, travel. As PWP advance, we become more dependent on care givers. Buttoning shirts, cooking meals, gettng to appointments.

 

I have met extraordinary PWP who are very engaged in life in spite of physical challenges. Some have published books, created self help groups, volunteered at service organizations....regardless of physical challenges. We would like to hear from them.

 

Care givers have been in the front row from the beginning...and watched independence move into dependence. Lessons learned regarding support of emotional issues...tricks to transform an environment more conducive to stage 3 and 4.....they are a huge resource.

 

Collectively,we may decide if we discuss stages while on meds...or stages off meds. Some people are absolutely normal with meds....without meds they may be totally dependent. That is like a tadpole...and tadpoles are complex. Tadpoles are always in a stage of uncertainty....will I be normal? Or not normal?

Will I be able to go to the bathroom by myself in a restaurant? Will I suddenly have serious tremor out break at a symphony? Or will I mess my pants on a bus?

 

Tadpoles are quite capable of swimming in deep waters. Yet at any time their world can be threatened and vulnerable. So, is a person in stage 1 if on massive meds they appear normal? Or are they in stage 3 if not self sufficient when off meds?

 

I am a self classified 1 and 3. I choose to think of the best.....prepare for the worst. When I am in stage 1 I ride a mortorcycle (Harley trike) and recently popped a wheelie with DH riding behind me showing off for grandkids. On a rural straight stretch I went thru six gears and waved to them. Who would believe I am not stage 1?

 

My MDS told me to always be on meds when I visit him because "you are too scary" when off. If I miss two doseage of meds I have full body bilateral tremor including jaw, mouth, and tongue. I cannot walk without assistance. I stammer or have halting speech. I need assistance in most anything. Am I stage 3?

 

It is unsettling to live in two worlds. I hope to learn from others how they cope between stages. It would be great to hear from care givers how their loved ones managed during transition.

 

I dont want to dominate this thread....and hope others will join with their insight based on their own experiences. Please keep in mind, we are hoping to design this thread so it is not a personal discussion determining who is in what stage. It is for people who are experiencing stage 3 & stage 4 criteria. It will be better when I have to get that critieria listed.

 

No one needs opinions of others to determine what stage they consider they are experiencing. No one needs to defend themselves. This is for disucssion among people with similar symptoms.

 

We all need to keep swimmin' even if it is upstream.

 

NN...definitely entering a NEW new normal. ????

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I am in 3-4 stage PD.

 

 

NN, you wrote you are stage 3-4. In my opinion you are not, and you couldn't possibly be, since you were diagnosed only three years ago. From your own descriptions of your daily living, you don't sound like you are in such an advanced stage either.

 

This is good news.

 

Also, no good can come out of "rehearsing" our future disabilities.  First, because nobody knows if and what will exactly happen to them. PD is a highly individualized disease and every patient is practically living a different experience.  Second, because we must live our lives in the present and enjoy what we have for as long as we have it, and in order to do that we must put PD in the back burner of our everyday life. Getting prepared for the worst won't help much with that...Third, because there's nothing we can do to change the future.

Edited by christie
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# what stage am I in?

 

 

 

NN, you wrote you are stage 3-4. In my opinion you are not, and you couldn't possibly be, since you were diagnosed only three years ago. From your own descriptions of your daily living, you don't sound like you are in such an advanced stage either.

 

This is good news.

 

Also, no good can come out of "rehearsing" our future disabilities.  First, because nobody knows if and what will exactly happen to them. PD is a highly individualized disease and every patient is practically living a different experience.  Second, because we must live our lives in the present and enjoy what we have for as long as we have it, and in order to do that we must put PD in the back burner of our everyday life. Getting prepared for the worst won't help much with that...Third, because there's nothing we can do to change the future.

Academia is based on the past and the future. The learning curve is not bound by mindfulness.

 

Anyone who feels uncomfortable or thinks this is not a.subject to be discussed or feels they do not qualify or has an opinion of what stage I am in, or chooses not to discuss the future or intends to live in the present..... need not read this thread.

 

If administration feels this thread is offensive, they can let me know. I want only to work within the parameters of the forum. "Freedom is just another word for nothin' left to lose"...

 

This thread is intended for realists who can remain in the present and plan for the future. Hope there are lots of them out there.

 

NN

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This thread is intended for realists who can remain in the present and plan for the future. Hope there are lots of them out there.

 

NN

 

you cannot plan for your future disability. the future will bring whatever is in store for you and you can't control it. You can only control your life now, and your quality of life now.

 

you have the tendency to overdramatize your condition.

 

As for your disease stage, since you are still able to ride a Harlem, you already know the answer to your question.

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# Hope, inspiration, success strategies

 

For the most part, I prefer not to focus on symptoms because what I spend my time thinking about I get more of. That being said, I use a website that tracks all symptoms and has its own forum for many diseases/disorders: www.patientslikeme.com. It has the UPDRS scale and several other ways to track your level of health and wellness, including emotional and cognitive. I don't use their forum because my friends are here. The information you input can even be printed out in preparation for a visit with your neuro or MDS. It is free. Check it out.

 

Don't worry, be happy.

 

Dianne

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#hope & inspiration

 

 

YAY YAY for Diane....one of my most FAVORITE PD HEROES!!! You GET it!!!!!

 

Yaaaaay! You give hope & inspiration to everyone. This is NOT designed for negative posts...its designed for posts that are relative to advancing PD.

 

Hooray! Thanks for the #. Maybe this wont work...but since we cant post different topics..I thought it might work on helping people search.

 

You are one fine lady, Diane...and have a wealth of knowledge to share ..thank you.

 

 

 

NN

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On PRDS scale there is a huge difference between "on" and "off".  So when you talk about stages, it should be "best performance" when on.

 

Normal nights sleep, then up at 5:00AM.  Took meds Coffee, breakfast, Got a couple of hours work done, Enjoyed a nice two mile walk and ran to the store for a quick errand. Top of the world, and while a little tired, felt great.  Stopped and visited with my neighbor on his front porch. Felt great, had a great conversation, and started to realize I was having issues speaking. Hand tremors, foot tremors, jaw started in. Couldn't talk. My "off" took about 15 minutes to hit the wall. So does that mean I'm stage 3?  Hell no, just means I am still stage one and have to pay attention to when I take med's!

 

To me I don't worry about what stage it is.  When medication is working, and I've been able to sleep and exercise... I swear I don't have PD (my wife says it is denial).  Today meds are good but hard time eating lunch, and loss of feeling in my feet meant I had a hard time driving (Way too much brake pedal pressure, locking up the tires and ABS kicked in).  Uh, just a reality check PD is real.  Compared to when I first was diagnosed, I'm doing great. What the next ten or twenty years hold out, I just don't know.  Maybe I just need to buy a motorcycle and go touring.

 

Humor on Neuropsych testing.... picture shows a bird.  Me: Bird lives near the sea. Bird like fish. Big mouth for fish... PELICAN!    Another was was a picture of a Harp.  I kept looking at the foot pedals and thought "stringed instrument with pedals" No not piano, thought harp but those pedals confused me. Finally called it a Harp.  Oh current events, couldn't remember who the current Governor of Texas was.  I live in Texas, and knew the name of the previous guy (Rick Perry). Knew current guy was in a wheel chair and huge advocate for Service Dogs, just couldn't think of his name.   Hmm. Five minutes later blurted out "Greg Abbot" in the middle of something else.  I hoped I passed my testing.  

 

Sometimes I amaze myself with remembering the smallest details like it was yesterday. I had a silly grin on my face, and my wife asked what is was. It was a funny conversation I had with Connie P. at lunch in 1975. Just seems so odd to remember a high school conversation from 40 years ago, and not remember who the Governor of Texas is.  Then again Connie was much better looking.  Hmm, and I've never had a crush on the Governor of Texas.  We just remember the important things.

Edited by TexasTom
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# planning for the future...housing

 

i am a planner. Based on my age, time of dx, current physical and cognitive condition, and that DH has been dx'd with PD also, we needed a re set button.

 

Statistically, given I don't get hit by a bus, it is likely DH or I will have limited mobility at some point...might be one year...might be five years...might be 10 years. I choose not to be concernd with mobility issues when I am 80 yeas old...and dont want our children to have to plan for our assistance.

 

When I was confirmed by 3 specialists I definitely have PD, we chose to sell our family home of 4700 sq feet and get rid of "stuff." . When we chose our new home, we had different criteria than before. We bought a "fixer upper" that is one level, approx 1200 sq feet, has a great view, 1,000 miles or more of desert access within 50 feet. While it seems rural, we are less than 5 miles from all services we need.

 

We have not sold our home yet, but with our savings, our first addition was a veranda and cemented nearly all exterior space on our lot. Next investment was changing interior doors to ADA regs. Next step we changed bathrooms to ADA accessible with lots of safety bars.and so on....we are nearing our 4h year of our project. Almost forgot......we made our new garage into a man cave for DH...making it large enough for all his hobbies etc with storage accessible.

 

Our future plans for the house will be porches, ramps, and landacaping. We plan on container gardening to access without bending on our knees.

 

Long term goals include developing a space for an RV or small trailer. We have hook ups and water access. Our thought when we may need assistance, caregivers can stay in RV..

 

So our objective may be 10 yeas out. But as we work on this piece by piece it gives us comfort we,are preparing our OWN future. We dont think of dependence on anyone. A nice blend of thinking of future needs while feeling empowered to make decisions on our own.

 

All of this prepaation is with the grounding that we will be able to remain in our home forever.

 

I recognize not everyone has the financial means to make this kind of move. All of us are different and at different stages. However, our initial life plan of having the perfect "family reunion" destination and a place for family to gather....bit the dust. It was an emotional experience to leave one plan and develop a new one...I have no regrets for starting early...while things were more simple than now.

 

As our dreams materialize, we continue to enjoy active hobbies...hiking, motorcycle rides..and bulding a toy trailer we can manage...

 

A blend of reality...and hope...that's what it is all about.

 

NN

 

Please share your preparation plan.

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I asked a neurologist what stage he thought I was in.  He said there was no such thing.  :|

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Mine too...

 

My MDS told me that classifying people by stage numbers is him giving false information....it's the PWP to determine how he or she is doing not a number...

 

D

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NN- on behalf of your children I am saying THANK YOU for all the planning for the future you and your DH are doing

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Nice to see formatting options!!

I agree that bullying occurs after someone posts a 'negative comment' about-PD,one might argue, 'reasonable comment' in such forums as this.    But how are we going to learn from one another if we gloss over symptoms?  Pollyanna people get sooo tiresome, as do chronic complainers.

(Mention fatigue and even the pollyannas come out of the sunshine closet. I would have thought I was losing my mind if I hadn't read that many other PD people have daily fatigue.)

Fear is fearsome in PD.... progressive--incurable...progressive--incurable. Some of us think about the future, however uncertain it may be. Few of us have the resources to stave off total incapacity like Ali and MJ Fox.  . (But thank you, Ali and MJFox, for attempting to help the rest of us!)

Our culture avoids discussing inevitable endstages of disease, of life, period.

Fortunately, in Cancer, we are now used to closer understanding our friends'/relatives' situations because of staging!  Granted,the criteria for CA are more rigid and 'objective,' yet, it is unfair to accuse PD people of exaggerating their more fluid, and variously staged symptoms.  'We're each different,' we write over and over, yet if my symptoms don't agree with yours, one of us is an hysteric. 

Furthermore, even stage 1, 'mild,' many people HAVE FELT LOUSY MAYBE FOR YEARS BEFORE THEY WERE DIAGNOSED!!!! Sorry, that's a non sequitur but a pet peeve.

So NN, write your truth and I hope you connect with some 3's and 4's.  Keep posting so we can compare notes!

Edited by kkarafon
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I agree that bullying occurs after someone posts a 'negative comment' about-PD,one might argue, 'reasonable comment' in such forums as this.    But how are we going to learn from one another if we gloss over symptoms?

Many of NN's symptoms don't even resemble PD. In addition, she's had multiple Datscans, all of which were negative. According to the latest diagnostic criteria, even a single negative Datscan excludes a diagnosis of PD. That's not "bullying", but it does raise questions.

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Ya just GOTTA love.this forum...some get it....others don't....some positive...others dont know the meaning....guess that's what makes us...us. Some people question others' dx....knowing more than the best neurologists in the SW...just gotta love them....

 

Now...to return to the intent of the thread....

 

Nice to see formatting options!!

I agree that bullying occurs after someone posts a 'negative comment' about-PD,one might argue, 'reasonable comment' in such forums as this.    But how are we going to learn from one another if we gloss over symptoms?  Pollyanna people get sooo tiresome, as do chronic complainers.

(Mention fatigue and even the pollyannas come out of the sunshine closet. I would have thought I was losing my mind if I hadn't read that many other PD people have daily fatigue.)

Fear is fearsome in PD.... progressive--incurable...progressive--incurable. Some of us think about the future, however uncertain it may be. Few of us have the resources to stave off total incapacity like Ali and MJ Fox.  . (But thank you, Ali and MJFox, for attempting to help the rest of us!)

Our culture avoids discussing inevitable endstages of disease, of life, period.

Fortunately, in Cancer, we are now used to closer understanding our friends'/relatives' situations because of staging!  Granted,the criteria for CA are more rigid and 'objective,' yet, it is unfair to accuse PD people of exaggerating their more fluid, and variously staged symptoms.  'We're each different,' we write over and over, yet if my symptoms don't agree with yours, one of us is an hysteric. 

Furthermore, even stage 1, 'mild,' many people HAVE FELT LOUSY MAYBE FOR YEARS BEFORE THEY WERE DIAGNOSED!!!! Sorry, that's a non sequitur but a pet peeve.

So NN, write your truth and I hope you connect with some 3's and 4's.  Keep posting so we can compare notes!

Thanks for your comment...couldn't have said it better...and most assuredly would have said it longer....smile..

 

KK, You are the perfect example of whom this thread is for. I bet you are a positive person...you fight your battles day in day out. U are right about measuring where you should be by date of dx.....I was a MS dx for a long time before PD...I have a friend who was symptomatic 20 years before PD dx.

 

KK, you might have different symptoms from everyone else.....and where can you post where people understand you? You may have accepted that your symptoms are progressing regardless of the vitamins, cocanut oil, and marijuana....and where will you post where you are not called "negative"?

 

This thread is for people who no longer notice a new tremor.....who do not concentrate on symptoms, who experience the most bizarre sensation...one that can't be explained to a doctor or friend...so you just accept it as another PD moment...and go on. Hmmm, right?

 

I figure you no longer read brochures which explain PD...cuz that is no longer a topic....you are living it...and mostly alone. I get it.

 

So I wanted to develop a thread where you and I can discuss openly what is our experience. Immediately our friends jumped on semantics...what is a stage? I explained...the stages are based on the measurement of how independent one is...it is NOT a clinical assessment...nor is it an assessment by your neighbor or fellow poster.....it is simply a measurement of how well one functions independent of others.....PERIOD. It is OUR opinion....based on our perception of how much we depend on others....ok?? It is not something to avoid discussing....just a base level.

 

Now.....do we measure ourselves "on" or "off"? Well. i figure if I am alone in the desert...with no rx...how long would I last....or for that matter in the middle of a shopping mall...how long could I go without assistance if I had no meds? Hmmmmm. Many in stage stage 1, 2, or 3 could smile at this...I dont smile.

 

Several times I have broken into tears when I cant find my way home...just five miles away....do I tell everyone? No. D H knows. When I cant find my way out a building? Do I broadcast that to the forum? No. I would be bashed by people who do not want to think of such things. Or think it is irrelevant to PD...I am just "stupid". Or I'm not concentrating. Or over dramatizing. That happens when I am ON meds....so what happens to me without meds? Could I live independently ? No. Can I live independently with meds? Yes. So what stage am I? If. a quadriplegic can walk four miles with prostheses...is he considered disabled? Hmmmm...a question to continue over dinner.

 

I choose to measure my stage by how I can function alone...since my survival depends on my capacity to be alone.

 

KK, I think you understand...and I think a lot of people out there understand...and those who CONTINUE to try to turn this into a debate on the merits of this topic...or suggest that I personally either do not have PD, or I am over dramatic, I suggest they dont upset themselves and should try looking at another thread.

 

Thank you so much for posting...there are more of us than the few dozens who post here regularly...there are thousands of "lurkers" who do not have a voice here....

 

KK, i am grateful I have an Irish genetic code.....skeptics, nay sayers, and people who enjoy trouncing on others do not have room in my world.

 

KK...help me build this thread into a productive outlet for PWP....whatever label they adopt...who cannot relate to existing threads...whose symptoms are their reality...and who want to share ways to improve their world.

 

Here's to peace....tolerance....acceptance.....empathy.......pragmatism, and awareness of the terrain ahead so we can get our gear packed...or in someone's world...our sh*^£t together so we can face this demon head on! ????

 

NN

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NN- I'm curious, do you think the getting lost is a memory issue or a visual spacial issue? Are you forgetting the way home or are you unable to recognize where you are? Are you still able to read an analog clock? (My mom can't anymore) just curious

 

On the subject of cognition I'll say one of the scariest things on earth is your brain lying to you. My brain lied to me a lot leading up to my brain surgery. Since then I've explained to family members of people experiencing neurological illness just how terrifying that is. In one case a mother had called me in tears after her son had just accused her of lying to him about having seizures, and what had happened recently (the seizure had caused him to forget the events of that day and that he suffers from epilepsy). She was so upset that he could think she would do that and I explained to her that he doesn't really believe she was capable of that, it's just that her lying was the least scary option. It was easier to believe that she was the one who was lying than that it was his brain telling fibs, because if it was his brain that was lying then everything he knew came into question- maybe she wasn't really his mom, maybe she doesn't really love him, maybe his sister isn't really his sister. Once I explained that to her she was still upset but a lot less hurt. The fear of not being able to count on what you "know" is awful. I don't know if anyone here has reached that point, but if someone has I can attest to the fact that it's a fear that is difficult for the uninitiated to understand.

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# VENT. CAUTION.....please respond by PM to me to avoid negativity on this thread.

 

Please note this thread is not about me, so I will respond about driving in a PM or establish a # topic about driving issues. Thanks, Fiesty for your thoughts.

 

I have received PM's from people who won't post because they dont have the energy to defend themselves, explain their situation...or fear negativity. Shame...shame..shame on us. I'm upset that ANYONE would get that vibe from our forum.....so this is my rant:

 

I dont want the forum analyzing me. Can there be a site where people can frankly exchange ideas based on subject matter? Suggestions based on personal experience? Not inquiring or judging the poster? So far, It is not working.

 

I want a place where PWP who are progressing can exchange without harassment. Note personal attacks TO ME on this thread? In the past, I have been criticized for using dots between thoughts...gosh...would someone think that SOME people may be able to process better if there are pauses.....?? I am learning PWP in denial attack anyone who speaks truth about physical, cognitive, and personality deterioration caused by PD.

 

On this thread, perhaps, discussion may be by topic...not by person......can we talk about "confusion while driving" rather than my personal challenges...which then opens it up to judgement....and eventual defensiveness....and hurt feelngs.

 

This forum has evolved to one of exclusion...note the numbers, folks. How many read? How many post?

 

When did we forget we all have baggage or we wouldnt be here....so where is the empathy???? Where is the tolerance if someone says something edgy, off the norm...do we accept that SOME people may be facing cognition issues? Can't we JUST accept...and if we cant...why the heck do people enter a conversation???

 

If a poster doesnt agree....doesn't accept....cant relate...than why dont they just pick up their dang finger off the post button?????There is an exclusivity among "postive thnkers" here...and they equate that with helping others...? The ones who havent traveled even 1/4 of the way are advisors...what about the other 3/4???

 

The word "positive" is annoying and generally misused. I've headed direct sales teams who were recognized nationally for productivity. Ya dont get results with just "positive" thinking, folks. You can rah rah and cheer all you want to achieve goals... But it is the guy who walks the streets...who knocks the doors...who does the WORK and listens to previous success stories who makes the sales. No one succeeds who blindly dreams of sales numbers...it is the guy in the field who reaps the harvest....and I want those PWP who are surviving to share their knowledge....to educate us so we can prepare and use their wisdom to guide us...cuz you sure ain't gonna hear it from the docs...you aint gonna hear it from beginners....those advancing with PD are our treasures...we should respect them...and give them the value they deserve.

 

So, rant over....fiesty...this is not directed to you...we can continue a private conversation...to others I ask your patience...AND especially ask for support for building a bridge to PWP who are entitled to their place on the forum.

 

PPWP. Progressive People with Parkinson's... or.......CGPPWP......care givers for progressive people with Parkinsons.......lets hear from you!!.....please......please................we are listening.

 

NN

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