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New normal

Drifting....in faster waters

47 posts in this topic

           I remember when my right hand decided that it didn't want to help me wash my hair, and instead decided that it was pretty much done with helping on other things as well..... I told it that it was FIRED. I was eventually able to "make" it help with most things, but it still won't help with my hair....

 

Recently I had an appointment with my PCP. It took me several trips back into the house4 to get things that "I forgot", before we were ready to go to my appointment. Let me tell you, sometimes it drives my spouse crazy, but then she's the driver, I guess she can be that way...lol Then when we finally get to my PCP appointment, I realize after (as we pull out of the parking lot), that oh yeah, I forgot to ask about this issue or that  problem..... my spouse gives me "that look", and I just say I'll call for another appointment when we get home... (thinking to myself, "if I remember").... Well that was last week, and yes, I did forget, and am making that appointment right now, while I'm thinking about it.... before I forget again...lol  sigh, I just hope I can remember what it is that I need to be seen for.... I'll have to make a note to remember to ask my spouse to write up a list,and post it on the fridge....LOL

Ok, enough of my rambling...... I'm off to make the appointment..

Edited by polyparkie
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Well, I have Dementia with Lewy Bodies, so I've been going down the cognitive drain for a couple of years now. What you describe is really sort of early/mild stuff, but that doesn't make it any less terrifying. My cognitive decline has continued to decline, although I have days here and there or hours here and there where I can think much more clearly. This apparently is a Lewy Body thing to have intermit periods of less bad stuff. For me, the movement stuff just started joining the show maybe a few months ago. They are still somewhat mild as compared to what many of you PD folks have, but worrisome still. I hallucinate more than I care to admit, but nothing scary, just bothersome because I'm always double checking to see whether what I think I saw is really something that is there. My service dog helps some with this, because if he shows no interest, then I can be fairly sure there isn't anything really there. I've read much, and it seems that my people with PD have significant cognition issues during the later phases, some to the point of being downright ruinous. Anyway, good luck to us all, as we all are travel a rough road that doesn't end well.

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I have enjoyed reading this thread....since I forgot I started it...(thats a joke...kinda...)

 

I wrote a long post...very positive...on how I was coping with the memory issues....then lost it into cyberspace...at least I THINK I wrote a long positive post...but now I digress...

 

These are things I remember from the post : .as cognition lessens I have found it useful to downsize, organize, minimize, prioritize, i think I tried to be clever as I explained each thing...cuz the post WAS very long...

 

In brief...I am simplifying my already simple life as much as I can...drawers and cabinets organized...and some with labels. All expenses and deposits are,automated. Instead of working off a to do list...I have an ever evolving list...I write on it as things come to mind ... i have a "place for everything and everything in its place". AND...the big step was to discard something if it didnt have a place. Fewer decor items...no old books...etc...Our home is looking like an outback cabin ...but I can find everything in the dark... I am creating an environment that requires as little thinking as possible.

 

now...for those who enjoy a vibrant discussion and are poised to leap...I AM NOT eliminating thinking....i am doing more and more,disciplined activities as I can to maintain...and still taking multiples of supplements.

 

The initial post of this thread is rather a bummer...I was in a bummed out mood...that happens when reality rears its ugly head....but now I am adjusting.....kinda...

 

The waters really ARE moving faster.....which for me would normally be exciting. For those who understand this situation.... exciting and fear are nearly the same thing.

 

Game rules have changed significantly since DH is floating down the same waters with his PD...my analogy always brings to mind our many kayak trips on spectacular rivers...rapids...or on the brilliant blue waters of Puget Sound or Hood Canal... ocean seals within inches trying to urge us out of their territory...large beavers slapping their tails to alert their family of our arrival.....we were ever mindful of possible unknown dangers ahead.....and never regretted the risk....because the journey was worth it all.

 

Yep...we are drifting...AND....we laugh every day....we give thanks every morning for the gifts we have...the beauty around us......we pray we may optimally use our capacity in the service of others...life is good.

 

For the weak of heart you can stop reading....for the Irish among you who face every trial with humor, I will share what made DH laugh yesterday....

 

"So what if we cant think!! Who cares if we cant remember? So what if we wind up in a "home" ???? Maybe we'll be the weird ones down the hall who stay in bed and make love all day!! (Wink...wink)" He laughed at the preposterous image...but laugh he did.

 

I have to work at it...but generally I can get one good laugh a day....ya know folks...we can do this...one good laugh a day.

 

Thanks for the comments...I dont feel alone...we can do this...each of us can....in our own way...

 

NN

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NN, I guess I am fortunate that "a place for everything and everything in its place" has been a part of my personality since childhood. On the other hand, it also made me resistant to change, which is constant in life and even more so in life with PD. I had to unlearn that resistance to change in order to be happy again after my diagnosis. I'm glad you can find the humor. That is so important.

 

Dianne

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I hear my 78 yr old brother with dementia has crossed over...into present time consciousness. This year by the time he stopped opening his Christmas pkg at "the home" he asked why he was receiving it. He remembers nothing from his past. Hmmmmm....there was a time when this news would sadden me.

 

Dependent on which lens I have on, the scene changes. I remember an intense testosterone driven man who knew everything on every topic and challenged anyone who disagreed.....a charismatic philanderer with a quick joke and a quick temper. "Might" meant right...strength/power ruled.....he took pride in not using head gear while sparring with a pro boxer. ( hmmmm...I question why he was THAT stupid...he was a professional economic analyst...sigh)

 

So...would I have wished a different ending to his story? He has always had a woman in his life...and there is a woman at his residence who has been his companion within weeks of his arrival 4 years ago. He doesnt worry about money..about meals...about anything...AND after a few skirmishes with other male residents...he doesnt have to worry about his companion. (Ok..in a weird way, this makes me smile)

 

He is in a naive space with no worries...no anger....at peace with his environment.

 

Many believe we need to return to the same level of humility and naïveté we enjoyed when we arrived in this sphere in order to return to the presence of our creator. I'm witness to that change in my brother. Hmmmmm...something to think about. (No pun intended.)

 

Best wishes to all...stay strong....and keep swimming...

 

NN

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A reality check:

 

"I want to go to the closest Verizon...since the one at the mall is always busy." With that in mind, we start our errands for the day. We wind up at the mall. DH says..."lets go here." I agree. I mention.."oh, that's right, the Chili's restaurant is next door."(at the mall)

 

Within 3 minutes, I comment to DH "I'm glad we didn't go to the mall Verizon." He explained our location...and actually started laughing. I was confused. I made a feeble attempt to defend myself...until I realized he was right. Sigh...then I started laughing...cuz each step closer to the "home" can only be dealt with in laughter...otherwise it would be a sad state of affairs....

 

NOW...I think I may have already written this before....soooooo....to those who think my writing skills dispel cognition worries, please know actions may not reflect abilities. (I was serious in that I cannot recall 4 letter words...but 3 syllable words come easilty...so weird....and the 4 letter words I DO recall are likely ones I have never used before...)

 

I am starting to think that additonal pysch/neuro exams may not be useful...and perhaps detrimental. This topic has been discussed here...and I urged PWP to get testing. Now that it is confirmed I am "mildly impaired" i question the value of noting the loss incrementally. Chart notes reflecting reduced cognition could be a negative .......

 

While I have my husband...I am confident driving the car and motorcycle. I still carry a concealed weapon. I can vote. I can make personal decisons about health care and finances. Criteria of my ability is in large part based DH observation. At any time we feel people at risk, I will adjust. The obvious answer is for me to relinquish such things now and in fact become dependent.

 

Here's the "catch 22"....at what point does a clinical test to see if you can count backwards determine judgement? I live within a few miles of the US southern border...do I walk alone on the desert without protection? Hmmmm....that IS one place I dont get lost...cuz one way is mountains...one way is home......(smile)

 

But this is a serious question while I still can ask it....at what point ...and under whose criteria do I surrender my rights? Hmmmm...based on current national events, I guess this is a universal question....if it were based on a written test, I could pass...haha....finding my way out if the building would pose a problem...

 

Sigh...something more to think about....but NOT stress about...as long as everyone is safe...things will evolve...we can only write our own script to a certain spot...then the third act may be written by others....

 

Thanks for allowing the rambles....

 

Laugh once a day...

 

NN

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Conversation on New Years Day with DH while exploring guided hunting trips on internet ....

 

"Hmmm, in this hunt it says..pheasants (males)....wow, I can't believe THAT...wait til those sharp shooting women hear..they will be really mad they can't hunt...."

 

"Honey..that doesn't mean only males can shoot...it means only males get shot!"

 

"Oh........silly me..." hahaha

 

So...am I "drifting"?...or just plain "dingy"?? Afraid I cant blame this one on PD...I' m naturally a little goofy.....and we got a good laugh over it.

 

The take away? Instead of resolutions...we spent alot of time today making a bucket list for 2017....may never happen....but we dream big! We then identified what needs to happen ...exercise, exercise, exercise....

 

(Apologies to those who oppose hunting...its my culture...and a guided hunt is long time dream of DH....we were just dreaming...)

 

NN....

laugh every day....especially at yourself...

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Hi folks...

 

My posts here are all news to me. I dont remember writng them. Gosh, I write LONG posts! (Smile)

 

I am correct that waters are drifing faster. Short term memory is really increasing. I often dont remember the last sentence in a conversation. When I heard "short term" I thought it meant like "last week"....and "long term" meant like 20 years ago. I never imagined how frustrating it is...and how much it impacts quality of life.

 

I had a comparative cognitive exam. Since my last exam 9 months ago, I am more impaired in the left temporal lobe...which is judgement and executive function. Hmmm, so,what does,that have to do with taking trash to the dishwasher instead of the compactor? (Smile)

 

I joke with DH about silly things I do. And I talk alot about them. So I told DH I will not talk about memory lapses when I finally accept my "New Normal." When PD symptoms first came I was intriqued with how many different sensations the body could create...buzzes, creeping, pain... tremors...etc. Now, I don't even notice physical signs. I'm hoping I will adjust to this challenge the same....accept that I am a bit loonier than before...as I said to DH..."just think of the people who have to drink a bottle of whiskey so they can think like me?? .....and I can get it for free!

 

I am "with it" most of the time...so memory issues are not consuming me....just scaring me.

 

So we are sitting in our comfy chairs watching a documentary on methamphetamine..horribly addicting street drug. A former star athlete and academic scholar, told his story of wasting18 years in horritic addiction. Now, straight for one year is living with his parents...with limited brain function.. With tears, his father told of that time period when he felt relief to hear he was in jail...for then he knew his son was alive.

 

I took DH's hand.."Would you trade our lives with them?" DH could not speak and shook his head "no".

 

May we all be content with our own bag of "stuff" and still have energy to help others along the path.

 

Keep swimmin & love the ones you love...

 

NN

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Hi folks.  From motorcycles to kayaking!

This thread is intended to be frank about evolving stages of PD...but not necessarily negative. So ....we are planning a road trip that contains our "bucket list"....in the past we've trailered our motorcycles and kayaks from our camper van. We've been uncertain if we were able to do that again.

 Well, i proved "doubting Thomas" wrong by driving Big Blue (our Harley trike that replaced our singles) for two hours last week. It was great and I had full capacity to ride with the wind in my hair, and my trusting DH sitting behind...with a few hugs during the long roadway stretches just making sure I was awake...(smile)

Last week we went kayaking first time in years. We were VERY doubtful...so, we hired a retired nurse who also is a professional kayak guide...how great is that?!  We not only did great....we did MORE than great!! Unbelievable 2 hours among wispy weeds, palm trees, and dozens of varieties of fowl.  We intentionally loaded...unloaded all our gear and boats with no help...did just fine...we both have resting tremor...so lifting and carrying boats worked...wasn't easy, but it worked!  We learned a new way to get in and out of the boats...which puts the frosting  on the cake!

Now, I KNOW this is in stark contrast with the many posts I've shared about symptoms...tests...etc. THAT's precisely why I want people to know it's important to stretch beyond status quo. I still hv symptoms...however, modifying ...adapting...and going a bit slower...we DID it!  I really am still not sure just HOW we did it...but it has energized us and brought "hope"... for lack of a better word...back for us.  I dont understand it ...I just lived it...when we got home...both of us were exhausted...stayed at home for a week.

Soooo, DH ....who literally has been by my side resting nearly all day for weeks...is now drawing plans to modify our trailer to make easier mounting our boats... we have done NOTHING for mos....now.....we are planning....planning for fun....!

Take away?  Try.  Keep trying.

With hopes and prayers for all impacted with PD...

NN

 

 

 

 

 

 

 

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All I can think is miracles do happen. I had an experience this past week involving a high level of cardio vascular exercise in which I was able to complete. I first checked with my PCP and she gave a thumbs up….which was encouraging in and of itself.

Maybe we don't give ourselves enough credit that we, with help above, can still achieve great things. It doesn't matter whatever you use as a measuring stick.

It's worth the fight back. If not for yourself, for the others around you. Sometimes it just means a little extra rest between I guess.

It's still difficult to stop looking inward instead of outward. Life is all around us.

Thanks for listening.

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Hi guys..(this new format is hard to get used to)

(Prepare for long post...for new readers, my husband (DH) and I both have PD)

I reread the thread...all new to me again...i appreciate ALL comments. I don't feel alone.

This is first day in my life I'm seeking help. Humility is an odd feeling.  Mmmm...  I sent a note to a couple who is assigned to us as a routine responsibility in our church. At 5 am I texted a request for a private meeting for counsel....I'm reeling that I am actually ready to share beyond a forum of strangers.

After 3 weeks of monitoring BP, it appears both DH & I are moving closer to MSA dx. (Let's avoid that discussion right now.)  DH is in rapid decline...if I speak truly.  Yesterday, while talking to a young man...a vibrant discussion of his life choices....I looked at DH ...he was staring with eyes wide open..tear fluid welling....blinking slowly....resembling MJF when off meds.  He responded to me.   That image remains with me.  Yeaterday, twice...I was told we need to find help. Hmmm...the message has come loud and clear...and I cannot deny such promptings.

At what point do we accept...like it or not....that we cannot do this alone?  What does it take?  Back to my old analogy...kayaking...yeah...we did great last week...on flat water.  In the past, we engaged in changing tides...and mild rapids...maybe a bit beyond our capacity.  Succeeded...and enjoy bragging about successfully overcoming the "hazards". This is different...our tool box is getting empty....Mind you, I am not complaining..not whining...please know me well enough to trust my assessment...i dont need rah rah's.  I need a map with options....I need to vent without judgement...and this forum offers that opportunity.

In stage 3 or 4....this instance will come to every PWP......especially to TWO PWP in one house....so I pose these questions for discussion.  We have 4 children...far away...with extreme family dynamics.  There is NO WAY we can rely on them....or even tell them...We can hire assistant....are we ready for someone to become one with us???and know there is no permanence?  Hmmmm.....we have spent 3 years adapting our home with the thought ONE of us would be a care giver.......it would suffice until "the home" is necessary.   And our home probably WOULD work now...for awhile...if we have no additional stress.

PD, while unpredictable...is still more finite than MSA....IF we DO have MSA....an additonal component is added to equation... So ...I...not we....DH can't deal with these decisions now.....he is overwhelmed....we (I) have to prepare for the worst and continue to pray for the best.  Therefore, waiting til final MSA dx is not an option.  Final dx of MSA comes at autopsy.  Relevant dx comes from observing progression. I am not ok discounting there may be a hazard around a turn in the river.  I scope out the course ahead...plan accordingly...and equip with every resource BEFORE I even get in the river.  My nature is to be certain I am as prepared as possible...and educated enough to react to the unexpected.

I share thoughts at 5 am after a sleepless night JUST in case one PWP relates....if ONE PWP can benefit from an open discussion regarding REAL preparation for our trip in the woods....I hope it benefits someone.

I await counsel from the couple who are smarter than I...more objective than I....have same values as I....and see where this leads.

To be brutally frank...I've  thought of exit strategies in the past. Its in my gene pool. Now, that is not an option.  I have moved well beyond that cowardly decision. DH & I are on the same course and I will never let him drift alone.

Just gotta try...don't we?  Just gotta take that next step regardless of fatigue....and at some point....as hard as it is for some of us...just gotta be humble......and move on even if is leaning a bit on someone's shoulder.

Try...just gotta keep trying.

Eager to hear your thoughts.😊

NN

 

 

 

 

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Dear NN,

Does your PD center have a social worker you could meet with? Social Workers are excellent resources for PWP. They can provide information on what's available to you and your spouse based on insurance and available resources. I live alone. I'm so grateful for the agency caregivers who come in 39 hours/week. They help me to still live independently. If staying in your home becomes too difficult. there are other options, including assisted living and Adult Family Homes where couples can live together. It's scary to contemplate but it's better to plan now for any eventuality.

If you don't want your kids making decisions, you need to make that clear in a Living Will now. 

I hope this helps.

Dianne

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NN -  After reading your gut wrenching post I immediately did a search of an old post I started on Nursing Homes.  You were so kind and considerate and gave me some very honest advice.  I'm sure you don't remember by now but you basically said parents don't want to burden their children with caring for them so it looks like you still feel the same way.   You mentioned I could possibly consider sending my mom to a home or at least assisted living so it sounds like you are now leaning toward that direction.  More power to you!   What ever you end up doing I'm sure it will be done with a lot of thought and support.   Keep us posted please.    

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Update:  I had planned to talk to our friends without DH....cuz he is very private.  I could not bring myself to do something w//out him so invited them to our home.   Actually, it helped DH speak about our future.  We made plans for each scenario...DH will have assistance if I am in hospital...I will have an advocate at the hospital...and vice versa.  They gave us numbers of reliable psychologists, paralegals, attorneys, house keepers, lawn care.  I gave them children's contact info.  I even mentioned that we would need to fly "home" so select a mortuary that works with airlines.  To some, this may be gross...I've learned often there are more than weeds in the details.

As they were leaving, a "handy man" came who had been recommeded to help us....perfect for our needs.  Admitting DH can't do regular home maintenance was difficult...but once in the open...with a few tears from DH....there is relief in our home.  Humility is not a bad thing.  It should not be confused with weakness.  For some, it takes more strength to admit limited capacity. 

That same day, we received a letter from VA doctor stating DH has obvious PD related to Agent Orange....a second doctor to affirm DH dx/agent orange.  It means the possibility of VA assistance that will help with expenses for our support team. 

Tomorrow, we go to cardio for options for orthostatic hypotension (OH).. After recording our BP for a month, it is likely both of us may be facing MSA.  DH dropped systolic at times 40+... with maximin being 20.   I am speaking the worst case scenario..  Obviously, this may prove we have PD only.  However, after DH had tilt table test showing OH, our neuro tapped our charts together.."well, looks like you both may have the same dx."  So, checking out the river ahead is not wasted time.

Thanks for letting me vent...hope to schedule time with counselor.... it is not for everyone...but for we who need to talk it out, it will make my posts shorter...smile...

MM, yes, I continue to plan our own future w/out our children's assistance.  I'm looking for a couple to serve as caregivers...perhaps living on our property.  It is cheaper for us to remain in our home than be in assisted living.  Things are moving..or "drifting" fast for us...so I'll also soon look for assisted living homes...to have alternatives...cuz the better ones have waiting lists.

Hope these vignettes of my personal life help someone...I know we are not alone...neither are you.

Keep swimmin' even when the currents get stronger...(smile)

NN

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Thanks so much for sharing this, NN.  You have helped me immensely through all your posts, but this one is striking in its courage and candor.  I wish you all the best--- and that none of these plans are needed, and that you will both end up with "plain old PD".  In the meantime, you have given me a great deal to think about, and a road map for a future I hope never happens to any of us.  You and your dh are in my thoughts and prayers. 

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NN, You are not alone.

Friday, Went to with my wife lunch, paid a $23 lunch bill with $40 but spaced change should be $17.  Cashier had handed me $7 when I turned to leave (I had left $5 on the table as a tip) but caught me and handed me to other $10 in change.  I really wasn't sure what I had done, but must have been distracted.

Then on a whim, joined my wife for pedicures.  Once a year I'll go with her, so off we went for a rare treat for my wife.  $40 each, plus tip.  I went to pay the cashier but paid $80 by handing over eight $20 bills.  My wife was standing next to had asked "what are you doing?"  Scary first for me as it didn't even dawn one me that I wasn't handling money correctly. I've love to say I was distracted, but tried to pay $160 to cover a $80 bill. $10 tip to each person, so $100 total.  My wife was still wondering what was going on.

I am great at math, but both times had a harder time calculating change. Scary as I am so fast and good with math, but these days will use cash to keep on a budget (credit cards are evil). Once I run out of cash, that's it until next pay day. 

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On 3/27/2017 at 8:48 AM, TexasTom said:

NN, You are not alone.

Friday, Went to with my wife lunch, paid a $23 lunch bill with $40 but spaced change should be $17.  Cashier had handed me $7 when I turned to leave (I had left $5 on the table as a tip) but caught me and handed me to other $10 in change.  I really wasn't sure what I had done, but must have been distracted.

Then on a whim, joined my wife for pedicures.  Once a year I'll go with her, so off we went for a rare treat for my wife.  $40 each, plus tip.  I went to pay the cashier but paid $80 by handing over eight $20 bills.  My wife was standing next to had asked "what are you doing?"  Scary first for me as it didn't even dawn one me that I wasn't handling money correctly. I've love to say I was distracted, but tried to pay $160 to cover a $80 bill. $10 tip to each person, so $100 total.  My wife was still wondering what was going on.

I am great at math, but both times had a harder time calculating change. Scary as I am so fast and good with math, but these days will use cash to keep on a budget (credit cards are evil). Once I run out of cash, that's it until next pay day. 

Tom,

Glad you posted.. I relate so much. Results of diminishing cognitive/psych exams tell the story.  However, it doesn't reflect the impact I'm experiencing.  Yeah, I dont match  colored cards...ok...that does not equate to the slaps I feel ...not just the embarrassment...but losing confidence.  Lately, when asked a question, my response is followed with, "Are you sure?"

Beau's Mom, Diane, often speaks of the "grief process" with each change in symptoms...denial, anger, acceptance.  She is correct. I posted before that cognitive skills are the hardest...cuz one feels alone...hiding deficits...while disappearing....no one hands you a crutch when ya fall.

Tom, I think I'm in acceptance phase now.  I no longer help DH in finding locations in the car..(smile)...not only do I dont know where I am .....DH doesn't listen to me...lol...

I worked for a lot of letters after my name...and now it means nothing.....can't do simple math, can't follow directions from automated phone "people".... the list is long.  I'm ok with it.  I've posted before, but bares repeating:  I'm no longer a professional, no longer a mom, I seldom leave the house...I am a shadow of myself....I've pondered...why am I here....knowing I face a long good bye....  I prayed...prayed for weeks... to know my purpose.  Finally, I received an answer.....just to me...I am to be the best daughter of God I can be.  Period.:  Life is not about comparison, competition, or living up to expectations of others...especially those from me.  It was like a catharsis..a cleansing of a life time pressure I created and carried....I no longer need to convince anyone of my worth....I am worthy.

I wish this for everyone...I am at peace with PD...and I've peace in my heart.  Each day I give thanks for knowing my purpose....and it is not limited to our time here.....I believe there is good ahead for each of us.

I've again made a long post....Tom, I understand.  Let's both hope there are some lurkers out there who can relate.

love the ones you love,

NN

 

 

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BtW, Tom...use a debit card... go online to chk yr balance..all recorded..and current. 😊

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