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New normal

Drifting....in faster waters

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New normal    1,275

To share.....

 

Awhile ago, I posted "Drifting..." to initiate a conversation regarding cognitive decline. The conversation morphed into a debate whether I was over dramatizing symptoms.

 

Later I made an effort to create a topic for persons entering 3 or 4 stage PD to allow PWP to exchange support, information, and conversation during transition to advanced PD. That site morphed into discussion of what "stage" meant...and then off topic into personal exchanges.

 

When I came to this forum 3 years ago, I was searching for accurate straight forward discussion of the reality of PD. I found great info, friendly people...i called it a "family.". However, as my needs changed, the "family" seemed to leave the dinner table and move on. Pragmatic people openly discuss and prepare for reality. Reality is offensive to some.

 

For those who are interested in the topic and might learn from my experence, I want to report. Regardless of brain exercises, Q 10, cocanut oil and other supplements, daily exercise, devotion to service to others, personal motivation regimens, and removal of stressors, my cognition and reasoning have declined rapidly in the last six months. Readers doubt the assessment because I write proficiently. That reasoning is precisely why I choose to open the discussion again.

 

Some people have cancer eating away their bodies, yet show few symptoms. The brain deteriorates quietly...behind closed doors. It steathily self destructs while outward signs remain normal. Only the individual is aware....and very lonely...with feelings of isolation and grief. We are experiencing the truth...our capacity is lessening.....we are "drifting" away from our former self.....yet have no one who relates. It is a time when an understanding friend is needed to assist the transition. However, few people are willing and brave enough to openly discuss the process.

 

A partial list of my symptoms include short term memory loss, incorrect word substituion, cannot follow directions, short attention span, cannot multi task, cannot follow a narrative...such as a movie or article. I cannot defend or describe the degree of impairment. Cognitive assessments affirm symptoms. And they are life changing. I no longer feel I could safely live independently. However, I still drive while with DH and have no problem with reaction time or reasoning. And I have been able to travel alone by air.

 

Anyone regardless of age or chronic disease will have these symptoms. However, i know there are other forum members further down the path of PD who will relate. They understand ...in spades....what I am describing.

 

When symptoms become transparent...and the deficiencies are exposed to one's world...an entire NEW transition occurrs...begging the need of compassion and understanding.

 

Yesterday, it took over 5 minutes to pay at a grocery store counter using a debit card. A call to DH, patient clerks and fellow customers, and finally tears before I could complete a familiar process. As I left, the following customer said to the clerk, "I understand, we all have mental problems." Ouch.

 

The young carry out woman consoled me and asked if I was ok. "Its just that I remember when I was smart."

 

At that point, I received a message intended just for me. In casual conversation to divert from the situation, I discovered she...at 20 years old...was going to hurry home to make Thanksgiving dinner for her parents...since her mother has mental illness and her father has one arm. She went on to say ahe would have to cook at the neighbors since she could not afford propane this month. Hmmmm...i needed to hear her story.

 

People dont see our baggage...and we dont know what others are carrying. We all have to just survive and hope we leave this place in a better state then we found it...and we have become better people.

 

I know this is long...I have gotten your point.

 

I hope this is helpful to someone.

 

NN

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stump    466

I have no insight or advice that would be useful. That said, I'm glad to see you back to posting.

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MarciaJ    267

I let my DH do anything that uses math. Pay the bills or anything like that. I used to do that myself. 

 

I have fallen but I have not read about another type of symptom. I was walking along our RV and one of the slides was out. I saw it but walked straight into it anyway. Then just stood there. My DH saw and pulled me to the left until I could go straight again. His answer to this was to put those long plastic tubes slit down one side and inserted it on the edge of the slide. Soon after this we went to Walgreen's and I saw the pillar but walked up to it and stopped. This time I didn't run into it. But stood there empty headed. My DH again pulled me to the left and I started walking. I have not heard of anyone doing this except me.

 

Is this what you were looking for? I don't have a clue how to prevent this. I don't know if the plastic tube helped or not. It was the answer my DH had but to me it isn't a case of viewing.

 

I don't have answers.  

 

. But the symptoms you describe I also have.

Edited by MarciaJ
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TexasTom    716

NN keep posting. You're not alone.

 

I had been told I didn't need to use Grammarly (web based program), but find it is helpful with words and sounding intelligent when I write.

 

I was at the pharmacy and it was a new clerk, who asked "should I put the receipt in the bag".  I swear she said "Michelle is in the back". She didn't have any accent at all, but my mind scrambled her words. Oh crap.

 

Have you done a Neurological Assessment?   Six hours talking and taking test with a neuropsychologist, explained it wasn't dementia, but just cognitive.  Irony is visual puzzle solving gave me a 95th percentile, yet on a spoken story and recall I was 35th percentile.  Finger manipulation was 12 percentile (dominant hand) and 5th percentile (non-dominant hand).  So written email, or forums, I do excellent. Spoken words, OK. (When my wife is talking to me I need to turn off the TV). Button shirts... oh no.  Post DBS I noticed I am moving better (less hesitation) and managed to button my own shirt (YA).  Only time will tell, but time marches forward for all of us.

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Beau's Mom    1,060

I notice small cognitive changes; enough to have an appointment for another Neuropsych evaluation next month. I had my first one two years ago.

 

My 86-year-old dad has vascular dementia. He is aware of his cognitive deficiencies and is becoming very frustrated. My mother, his caregiver, is becoming overloaded with stress, but will not leave him with anyone else.

 

As new symptoms arise, I find it important to acknowledge them and grieve their loss. That means sharing my feelings of shock, denial, anger and fear, depression and hopefully at some point, acceptance of the "new normal" (and acceptance of our dear NN as she shares her process). I am grateful to have such a place here with all of you.

 

Dianne

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swamper    59

Oh dear NN, I am so glad to have you back!  and i so understand what you are going through---I am in just about the same place.  It is so difficult, and so hard to talk to anyone about.  I still drive around our small town, but never at night, and almost any other place we go, I have my dh drive.  Even going to the grocery store, as i worry about freezing in the parking lot, and have all the trouble you mention re: paying, getting change, holding up the line, etc, etc.  Last Saturday I foolishly went to Walmart alone, just to get a few things.  It took a long time, my med was due, and I knocked over a display of spices, and people just stared while I tried to pick them up.  Of course the more I tried, the more they fell over.  I did not cry (for once--that is so embarrassing!) but managed to get home, and fell apart with my dh when I told him about it.  The crying is so frustrating!  Our children are all far away, so I can sound pretty normal to them over the phone, but they will be here over the holidays and I know I cannot fool them for that long.  And I will end up crying again!

 

The cognitive stuff is so very real.  I know that they use the term cognitive impairment when they figure you can still handle basic ADL's, but I also understand your feeling that you could not manage alone.  I know I could not, although I guess I do not fall under the categ0ory of dementia---yet.  Am not sure what makes the difference.  And knowing it is happening is so very scary.  

 

I will stop this rant now, but wanted you to know that some of us do understand.  Please stay with us, and keep the thread alive.  It is a conversation that we very much need to have. 

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miracleseeker    675

I still can't help wonder if C/L could be the blame for this.  How can any of you know for sure since all of you need to take it to control your PD symptoms.  I know it's scary as hell to see yourself losing it.  No one wants to rely on anyone for day to day tasks or face what the future holds.  I have anxiety attacks every morning when I wake knowing I'm responsible for my mom and it isn't getting any better.  What to do what to do.... 

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Dancing Bear    80

At my recent 5 month followup with my MDS I was upfront telling him about small changes in cognitive abilities that I have noticed.  Anxiety/apathy, attention span, executive function (planning, etc), short term memory.  None of these things problematic at the present time but small stressors none the same.  Yes I have even fumbled with credit cards in my wallet and almost left one with the signed receipt in my restaurant bill portfolio.  Words come slower in conversation.

 

My MDS pointed out that dementia in it's early stages covers many of these things in it's definition.  I have the added burden of AZ in my family history so chances are elevated for me to have dementia the older I get.  Like Texas Tom pointed out.  Time will tell.

 

Still independent on all fronts but will be looking for a financial planner in the new year to ensure estate and retirement finances squared away as I do all that stuff now and my wife does not.  She may need my son and maybe a planner running along side in the future.  

 

Hang in there NN!

 

DB

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Pathfinder    65
Oh dear NN, I am so glad to have you back!  and i so understand what you are going through---I am in just about the same place.  It is so difficult, and so hard to talk to anyone about.  I still drive around our small town, but never at night, and almost any other place we go, I have my dh drive.  Even going to the grocery store, as i worry about freezing in the parking lot, and have all the trouble you mention re: paying, getting change, holding up the line, etc, etc.  Last Saturday I foolishly went to Walmart alone, just to get a few things.  It took a long time, my med was due, and I knocked over a display of spices, and people just stared while I tried to pick them up.  Of course the more I tried, the more they fell over.  I did not cry (for once--that is so embarrassing!) but managed to get home, and fell apart with my dh when I told him about it.  The crying is so frustrating!  Our children are all far away, so I can sound pretty normal to them over the phone, but they will be here over the holidays and I know I cannot fool them for that long.  And I will end up crying again!

 

The cognitive stuff is so very real.  I know that they use the term cognitive impairment when they figure you can still handle basic ADL's,

 

 

but I also understand your feeling that you could not manage alone.  I know I could not, although I guess I do not fall under the categ0ory of dementia---yet.  Am not sure what makes the difference.  And knowing it is happening is so very scary.  

 

I will stop this rant now, but wanted you to know that some of us do understand.  Please stay with us, and keep the thread alive.  It is a conversation that we very much need to have.

 

 

Did you know that you can request an associate to shop with you in WalMart on the days you might feel the need? The courtesy desk can assist you with that, the associate stays with you the entire time even during check out and placing your items in the car. I am so sorry you had such a hard time shopping and hope this helps.

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Linda Garren    752

I belong to this club...this stage...this challenge...this point re: PD as all of you describe above.  Hard does not even begin to explain how difficult it is.  I was so glad to hear that most if not all of you have someone to help you.

 

This was posted in another health forum I belong to (for MPD) and is such a good reminder to remember as we walk the path we are on with PD, as well:

 

'God, grant me the serenity to accept the things I cannot change, 
courage to change the things I can, and the wisdom to know the
difference. Living one day at a time, enjoying one moment at a
time, accepting hardship as the pathway to peace; taking, as He
did, this sinful world as it is, not as I would have it; trusting that
He will make all things right if I surrender to His will; that I may
be reasonably happy in this life, and supremely happy with Him
forever in the next.'

(--Reinhold Niebuhr)

Edited by Linda Garren
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Peace    160

I use to keep my bills in order by denomination and all the presidents facing the same direction.  Now, I don't have the speed or dexterity to do that at check out so when I get home all my bills are just wadded up in my coin purse.  I leave drawers and cupboard doors open.  Why?  I don't know.  I use to be a type A personality and everything in my world had to be in order.  If something was askew and fell under my DH realm he would say "I'm going to fix that now because I know it's going to upset you until its fixed".  Now, I may not only not worry about it but more likely will totally forget about it.  My canned veggies used to be lined up in rows according to kind.  I still try but "oh well" if they're  not.  I can't remember words and such at work. I'm a (was) good speller but now the simplest words don't look right in print.  Most people think I'm just ditsy.  Some probably think I'm stupid.  I can relate NN, I too remember when I was smart and I was the "go to" person.  I was the capable one.  I must admit though, I find life a tad bit easier not being type "A" and being able to just let things be. 

 

Has anyone else noticed that people tend to only remember one or two symptoms of PD and think that's all there is to it?  My dear mother, always asks how my foot is (dystonia) as if that's all I have going on.  I know she's praying and she wants so much to hear that it's "better", as if its cured. 

 

The deterioration is so slow that only the affected notices.  I think even my husband forgets sometimes.  He needs to try washing his hair with my left hand!  My left hand has decided it's just not going to help wash hair.  Does it believe it has somehow risen above such a mundane chore?

 

Sorry.  Now I'm just ranting.  Thanks for letting me.

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Linda Garren    752

Peace, I had to laugh as I read your first paragraph above. It's so funny.  And I relate totally.  I used to have everything in order, to the point that I would move something an inch or so in order to be exactly lined up where I thought it should be.  Well....no more type A here, either!  LOL!  It's a different life, isn't it.  And I also have that strange thing of looking at words now after I type them (correctly) and feel they are just not spelled correctly.  Very odd.

 

And I'm sitting here not able to stop laughing at, "My left hand has decided it's just not going to help wash hair.  Does it believe it has somehow risen above such a mundane chore?"  LOLOLOL!!!!!!

 

Well, we do have a lot to laugh at now, once we get through whatever it is we are trying to do that is so challenging!

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miracleseeker    675

I use to keep my bills in order by denomination and all the presidents facing the same direction.  Now, I don't have the speed or dexterity to do that at check out so when I get home all my bills are just wadded up in my coin purse.  I leave drawers and cupboard doors open.  Why?  I don't know.  I use to be a type A personality and everything in my world had to be in order.  If something was askew and fell under my DH realm he would say "I'm going to fix that now because I know it's going to upset you until its fixed".  Now, I may not only not worry about it but more likely will totally forget about it.  My canned veggies used to be lined up in rows according to kind.  I still try but "oh well" if they're  not.  I can't remember words and such at work. I'm a (was) good speller but now the simplest words don't look right in print.  Most people think I'm just ditsy.  Some probably think I'm stupid.  I can relate NN, I too remember when I was smart and I was the "go to" person.  I was the capable one.  I must admit though, I find life a tad bit easier not being type "A" and being able to just let things be. 

 

Has anyone else noticed that people tend to only remember one or two symptoms of PD and think that's all there is to it?  My dear mother, always asks how my foot is (dystonia) as if that's all I have going on.  I know she's praying and she wants so much to hear that it's "better", as if its cured. 

 

The deterioration is so slow that only the affected notices.  I think even my husband forgets sometimes.  He needs to try washing his hair with my left hand!  My left hand has decided it's just not going to help wash hair.  Does it believe it has somehow risen above such a mundane chore?

 

Sorry.  Now I'm just ranting.  Thanks for letting me.

Outsiders will never know how many things go wrong with the body and mind from PD.  Oh does your mom shake like MJF or is she like Mr so and so who needs a wheelchair oh wait... he had stroke didn't he?  oh never mind.  Is it like MS?  Does your mom know who you are?  Does she throw things and hit you?    I totally understand people's ignorance in this disease.  I wish I was a bystander too and get to go back to my own selfish life and not have this burden. This disease sucks the life out of you and wastes your precious time.

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Discovery    387

I wish we were all bystanders....PWP and the loving people who care for us..

 

Thank you Miracle for your candor.

 

D

Edited by Discovery
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Discovery    387

I always get this statement from people who know squat about Parkinson's.

 

I knew someone with Parkinson's who lived til 84 or whatever age

 

I just want to scream!!!! Yeah that's just a number it's the quality of life you idiot!!

 

Ask that person how his or hers last 10 or 15 years were.

 

Lots of Ignorance....

 

D

Edited by Discovery
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Twitchy mama    44

What about the folks that say "I,m going to stay healthy in my senior years" - like we chose to be unhealthy!!!???

But the best/worst comment is "well, you look good" - so you must be doing ok or feeling ok!!!!

Makes me want to scream.

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ellaangel2    191

I have a friend that "insists" she is going to live to be 102 (eats kale, cod fish every day.)  Is 72 and never been sick a day in her life........is it luck, genes or her diet?? Who knows???   She believes the way she will die is "at the hands of a jealous wife!!"

 

Geez..........I really hope it works out for you!       :?

Edited by ellaangel2

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miracleseeker    675

I have a friend that "insists" she is going to live to be 102 (eats kale, cod fish every day.)  Is 72 and never been sick a day in her life........is it luck, genes or her diet?? Who knows???   She believes the way she will die is "at the hands of a jealous wife!!"

 

Geez..........I really hope it works out for you!       :?

Your friend needs to be cloned.

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PatriotM    807

Almost everyone with PD has some cognitive problems.  The question is what to do about it.  In my case, I have terrible short term memory, word finding difficulties, some slurred speech, and more.  I discussed it with my MDS and he said the drugs that are prescribed for memory issues are only marginally effective and they have serious side effects.  He suggested adding cognitive exercises to my exercise routine, such as counting up or down by various numbers while walking (i.e. 100, 97, 94, 91, 88...etc.) and living a normal life (socializing, etc) 

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miracleseeker    675

Let's face it.  We only have one brain and that can't be upgraded to a newer model so we are stuck with an organ that is deteriorating day by day.  Use it or lose it.   It's not unusual to feel yourself slipping with time.  Nothing lasts forever.  You may not be as sharp as you once were but you obviously can still function enough to live your life and... post on this forum clearly so give yourself some credit and keep moving. 

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johnnys    460

Hi NN

I to get mental quirks from time to time but they are getting fewer or maybe its because I forget them,haha.So who says short term deficits cant be a plus.haha

 

One thing of course unless i do something like have a accident I let it go ,naturaly.I kid you not I know I get them but except for the word debits Linda talks about is all I can pull out of my PD brain,right now.

 

Now isn't this strange I visit a ward of patients maybe 25 once a week and i know all of them by name.Does that sound like I got a cognitive problem to be concerned with?

 

nervous persons have a tendency to worry over small stuff ..We can be a master of our thoughts and our moods through steady practice PD or not

 

It was a sunny 60 ish day today hope it continues.

 

best

john

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NN good to see you. I'm lucky I haven't too many cognitive deficits. There is always "that word" in conversation that I can't pull out of my mind. I know what it is, I know what it means, I can almost see it, but I can't say it. Conversations slow to a halt as I continuously search for that next word. Lots of apathy. I've never been the best house keeper but now....I often live in a pig sty with no desire to clean it up.

 

Marciaj, I understand the running into things that are right in front of you. My doorways move a lot as I walk through causing me to plant my body midway. I blame it on the walls and doorways because I have no idea how to explain my inability to miss them.

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