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Taking A Break(1)
BillBRNC
Posted: Saturday, April 23, 2016 7:22 AM
Joined: 12/2/2015
Posts: 1018


Had conference yesterday afternoon with main memory doctor, and with my wife. My Pet Scan appears solid for Lewy Body Dementia, with some Alz findings too. My symptoms and neuro tests are mostly Alz, but with some Lewy Body stuff. Doctor's view is that I probably have a mixed dementia of both Alz and Lewy Body, but which one wins out will show itself more over time. I'll likely get another Pet Scan in the clinical trial, but she said it really isn't necessary, but she hopes to do it just to get a firmer view on the Alz component of the diagnosis. She said there is a small chance that I only have Alz, as opposed to mixed Alz and Lewy. The doctor said that there is no favorable outcome on the table, and that things are only going to get worse. She said there is no question that the Pet Scan findings have no interpretation other than bad. I basically cross-examined her to see if I could talk her into saying something positive, but the most she would say is that I probably have a few good years left. She was more pleasant and eloquent in saying it.They are setting up a so-called treatment plan that will be revealed in two weeks when we go back to meet with the counseling side. The Excelon will continue and be increased, along with some type of antidepressant, and my wife will likely accept their invitation into a multi-session caregiver class (or whatever you want to call it). I've been waiting to get something this firm, although I don't care for the outcome, but I've know the score for a long time now, but now my wife fully accepts that things have changed for good. We have a lot of loose ends to wrap up over the next several weeks, and I do plan to go forward with the service dog thing. My doctor isn't sure the dog is going to really help, because I really don't need the dog now, but when I do need the dog the dog probably won't do me any good anyway, but also the dog is good therapy anyway, blah, blah, blah.... I realize service dog might not help much, but I'm going to get one anyway because there really isn't a downside. Got to decide how to tell our son and his family, but I finally told my brother last night, but he more or less already knew. I'm going to let things just flow out in due course as far as telling others. Got to get my wife fully involved with our finances and investments, and other stuff. Life goes on as we all know. I'll probably be taking a break from posting for a while. I'm tired of talking about it right now. Thanks for all the help, and I'll be back. Bill.
alz+
Posted: Saturday, April 23, 2016 8:19 AM
Joined: 9/12/2013
Posts: 3608


well this is a heartbreaker.

The doctors are not sure if it is this or that, and they have no clue what causes either, but they will offer some drugs and then tell someone they have a couple years left.

A month ago a man posted about his wife being told she had a couple years left under a CBD oil discussion. He decided to try cannabis in baked desserts, she then improved to where she was driving again.

That man emailed me his phone number so I could speak to his wife. -  I wanted to know if it was true. It was true and she was wonderful and leading a good life.

I came to boards this morning because I just read an article on "how Alzheimer patients deceive" people by "being mean with their caregiver but changing into a nice person to outsiders".

If it was not ALZ they would not use the term DECEIVE. Maybe the CGvr never smiles at them, maybe there is the exasperated expression on thier face every day. Maybe the person  with ALZ feels the weight of all the CGvrs lost dreams and the blame the person with ALZ carries. The evening agitation called Sun Downing, the need to explore called WANDERING. 

Maybe at end of day the person has used up the energy supply they have, maybe they need to move, maybe they are suffering from horrible agitation and anxiety. Maybe  things could be changed in their circumstances - but you can't bill for figuring out the person needs a change in atmosphere. There is plenty of money in scans and drugs.

This is not meant as any criticism of Bill, I love the guy - he so honest, bold, and ready to face anything. But I am angry at how he is being set up to fail, given an antidepressant and an Excelon patch that even its makers describe as for early ALZ when he may have Lewy Bodys.

MAY HAVE.  They don't know. There is growing evidence that all these brain diseases are from a toxic environment. Regardless of that, we are living in a country that would threaten  a person with jail for using a plant based medicine.

I am burning up mad about this. Now comes the part where he either bucks off the doctors'  "guess of doom" and tries for a better life OR he and his wife and family all try to fulfill the prophecy because after all these are the scientific authorities.

Thank God I avoid all these scans and authorities.

I am not saying he is wrong to believe in them, or mean to be disrespectful of those of us who feel comforted and helped by the doctors, scans, tests, and medicines. I am saying we might all at least consider they have no clue what plaques and tangles do, if they protect against a toxic element or cause disruption in processes. They focus on memory loss when there isn't any, there is an increasing blockage in Retrieving Memories.

The way the doctors have this sized up affects how we are treated. We become less than human, "not who we once were" (who is?), and on and on. Bill now questions THE USE of having a dog, when any stable dog would bring comfort and joy to his life. 

Very successful visit to top medical experts. Give some one access to horses or chickens or something to do and compare that with the prescribed future he was just given.

We are labeled in so many ways that diminish our humanity no wonder there are more people setting up suicide pacts than finding ways to live that are outside the PRESCRIBED FUTURE of DOOM given by...medical authorities.

I hope this is not read as an insult to any of us who do need those scan reports and do feel better having an Official Diagnosis. I just lucked out by having an old doctor who knew it was no death sentence and the experience of caring for my Dad and others to know it was nature taking its course and I could make the end of my life my own.

Please forgive me if this offends you. I am not insulting your needs, but hoping you consider the way can be a lot wider than you think.

Love you Bill. Love you all. Question Authority.


a_step@a_time
Posted: Saturday, April 23, 2016 9:27 AM
Joined: 11/21/2015
Posts: 237


Alz+, I think I know what you mean.  I used to view all doctors as 'trusted authorities' until my (blatant) epiphany of the lies being told to me.  So sad and  frustrating.  I dont know who to trust anymore.
a_step@a_time
Posted: Saturday, April 23, 2016 9:37 AM
Joined: 11/21/2015
Posts: 237


Oh, wait, may be lies is too strong a word.... May be I just say non-truths.  
alz+
Posted: Saturday, April 23, 2016 10:57 AM
Joined: 9/12/2013
Posts: 3608


I just lost my post.
Thanks Step for understanding and translating. You have had some struggles!

My Mother Protector instinct was over heated this morning.

 I want all of us to have what we need as much as possible. It worries me that doctors who care for people with dementia do not have scans or tests that allow them to make accurate diagnosis, and in the case of dementia there is a lot of guessing and making do.

love you all and want us all to be safe as possible and recognized in our full humanity no matter what abilities we retain or lose.

If doctors had a way to fix us, they would love to do it. If they could determine cause they would. Until then we kind of find our own way.

Bill is a very smart man and determined. He does not need my hyper vigilance (last night the eaglets were alone in nest for over 2 hours, I left my computer on waiting for parents to come home but fell asleep). 


w/e
Posted: Saturday, April 23, 2016 11:25 AM
Joined: 3/7/2012
Posts: 1747


Mr. Bill, I hope for the best... I hope for good moments, good days, good years ahead.

 If you are reading this, I agree. Take a pause / a break / a respite from posting... Finish putting the last touches of legalese and business affairs in order. And then, move on. Tests and treatments are personal, individual decisions. What-ever you decide to do. It is your do...What-ever gets you through this, with peace of mind and peace of heart.

 There will be moments of good winds and good seas ahead. There will be howling winds and rough seas ahead, as well. You will continue on your journey. Some of the time, with anxieties, doubts, fears, despair, and tears. But most of the time, with determination, strength, and courage. 

 As you embark on your odyssey, noble and strong, I know you will find support, comfort, contentment, tranquility and peace in the love and in the embrace of your wife, your siblings and saplings. They will be your anchor... Supportive family and friends is manna from heaven... You will receive nourishment from all the love in their hearts.

And your e-friends will be here, as well. Whenever you are in need of encouragement, suggestions, advice, and/or a word or two of caution. Just knock, knock. The electronic window will open. You will find us here. At the ready. We will use our 26 letters and create magical sounds for you to hear. With all the love and care in our hearts.

Life is a balancing act. Isn't it, eh?

 Hugs.


Iris L.
Posted: Saturday, April 23, 2016 11:26 AM
Joined: 12/15/2011
Posts: 18210


Bill, I am glad you have had the full experience from your university medical center and have been given some answers.  Now you can ponder what you have been told.


I would advise that you continue to read the boards.  The news given by professionals is always bleak, because they know they don't have much to offer.  The only place I learned about Best Practices is right here on this message board.  I also learned about keeping a positive attitude, avoiding stress, and many other aspects of living with dementia.  


All is not bleak!  You are now a Dementia Pioneer.  You need the support of people like yourself.  I would advise not shutting out your peers.   I fell into a deep depression at one point, (in 2010), and what got me out of the deep depression was reading the posts from my fellow patients.  This was before the changeover to the new board.  There were many more patients posting, in those days.  


What  I am saying, is that my peers got me through the deep depression, even though I did not post, but I read the posts.  As of next month, I will have been on Exelon patch for seven years, and Namenda for seven years in July, and I am stable.


I hope you stay with us.  Best wishes to you and your wife.


Iris L.


jfkoc
Posted: Saturday, April 23, 2016 11:57 AM
Joined: 12/4/2011
Posts: 21004


I have some idea of how your approach to this news is going to be. I have a lot of info re LBD to share if and when you want to. 

Judith


Iris L.
Posted: Saturday, April 23, 2016 12:03 PM
Joined: 12/15/2011
Posts: 18210


Alz+, thank you for another insightful and uplifting post!


It's great for PWDs to hear from their peers, not only from the "professionals."


Iris L.


Iris L.
Posted: Saturday, April 23, 2016 12:39 PM
Joined: 12/15/2011
Posts: 18210


At the same time, I want to remind everyone about the psychology of doctors.   Modern doctors feel that they have to present only the scientific knowledge.  They are trained NOT to raise the hopes of patients. They focus on the science, but not the art of medicine.  


That leaves the patients with trying to read between the lines and trying to figure out their own answers.  This is modern medicine today.  I was trained that medicine is both and art and a science, back in 1971.


Iris L.


Unforgiven
Posted: Saturday, April 23, 2016 12:57 PM
Joined: 1/28/2013
Posts: 2659


The doctor says the dog won't do you any good?  Really?  The doctor  ust not be an animal lover.  True, the service dog probably can't do your finances or lay out your pills, but that dog can certainly learn a skill set appropriate to your needs.  In addition to simply being a loyal friend.

Bottom line, you know the situation now.  What you don't know is how long the good years will last, so focus on having all the fun you can.  Travel.  Fulfill the bucket list.  Go on an extended second honeymoon with your wife.  You have permission now, because keeping your nose to the grindstone no longer serves a purpose.  Forget about the Dread Diagnosis and live you life.  And come back here once in a while to share the good stuff.  Le chaim, Bill.
Unforgiven
Posted: Saturday, April 23, 2016 1:24 PM
Joined: 1/28/2013
Posts: 2659


The doctor says the dog won't do you any good?  Really?  The doctor  ust not be an animal lover.  True, the service dog probably can't do your finances or lay out your pills, but that dog can certainly learn a skill set appropriate to your needs.  In addition to simply being a loyal friend.

Bottom line, you know the situation now.  What you don't know is how long the good years will last, so focus on having all the fun you can.  Travel.  Fulfill the bucket list.  Go on an extended second honeymoon with your wife.  You have permission now, because keeping your nose to the grindstone no longer serves a purpose.  Forget about the Dread Diagnosis and live you life.  And come back here once in a while to share the good stuff.  Le chaim, Bill.


Michael Ellenbogen
Posted: Saturday, April 23, 2016 3:00 PM
Joined: 11/30/2011
Posts: 4341


Let me tell you I just got a dog and I am by far worse because of him. Sure I love him but it has taken away from being able to focus on anything around me. That is just one of the issues and a huge one. When you already have trouble focusing on the TV and other things that is the last thing you want. May be they are good if you are a lot worse then I. That won’t be long.

 


Lane Simonian
Posted: Saturday, April 23, 2016 4:21 PM
Joined: 12/12/2011
Posts: 5129


I am sorry for the diagnosis, Bill.  I would not give up on the marinol/dronabinol or the CBD oil.  I have read about neither for dementia mainly with Lewy Bodies, but I know that feru-guard (ferulic acid/Angelica archangelica) helps with behavior in both Alzheimer's disease and dementia with Lewy bodies and it makes me think that if THC helps with behavior in straight Alzheimer's disease it is likely to help in forms of mixed dementia as well.

Effect of ferulic acid and Angelica archangelica extract on behavioral and psychological symptoms of dementia in frontotemporal lobar degeneration and dementia with Lewy bodies.

RESULTS:

Treatment with Feru-guard led to decreased scores on the Neuropsychiatric Inventory in 19 of 20 patients and significantly decreased the score overall. The treatment also led to significantly reduced subscale scores on the Neuropsychiatric Inventory ("delusions", "hallucinations", "agitation/aggression", "anxiety", "apathy/indifference", "irritability/lability" and "aberrant behavior"). There were no adverse effects or significant changes in physical findings or laboratory data.

CONCLUSION:

Feru-guard may be effective and valuable for treating the behavioral and psychological symptoms of dementia in frontotemporal lobar degeneration and dementia with Lewy bodies.


http://www.ncbi.nlm.nih.gov/pubmed/21272180


http://www.alzheimersanddementia.com/article/S1552-5260(10)01948-5/fulltext


The company that sells Feru-guard (Glovia from Japan) says their product is superior to other ferulic acid supplements, but those supplements might work nearly as well.  These substances (marinol, CBD oil, ferulic acid) may be options that most doctors do not know exist.


Iris L.
Posted: Saturday, April 23, 2016 4:31 PM
Joined: 12/15/2011
Posts: 18210


Unforgiven wrote:

 focus on having all the fun you can.  

 



Words of wisdom for all of us PWDs.  Thanks, Unforgiven.

Iris L.


alz+
Posted: Saturday, April 23, 2016 8:34 PM
Joined: 9/12/2013
Posts: 3608


Michael Ellenbogen wrote:

Let me tell you I just got a dog and I am by far worse because of him. Sure I love him but it has taken away from being able to focus on anything around me. That is just one of the issues and a huge one. When you already have trouble focusing on the TV and other things that is the last thing you want. May be they are good if you are a lot worse then I. That won’t be long. 

 ***********
 

 

You are the Ernest Hemingway of the boards!
Yes, selection of a dog makes a world of difference.  I had a rule NO DOG HEAVIER THAN I CAN CARRY but so far only one under 50 lbs.

would someone tell me if Michael's post was saying he is having a rough time of it now and a dog made it harder, and feeling he is getting worse imminently. Please.

 I love what he writes and the way he writes it so  much I think I totally miss the seriousness.

 


jfkoc
Posted: Sunday, April 24, 2016 10:35 AM
Joined: 12/4/2011
Posts: 21004


We ended up with and 85lb dawg. I am partial to fluffy 25lb Disney dogs but this one jumped into the car with Dick and he was ours.

Luke was great for him and now he is great for me. My only thought is to not get a dog unless the person who will be responsible for him wants one too and size, at my age, needs to be considered. 85lbs having a seizure going upstairs was a problem!


Michael Ellenbogen
Posted: Sunday, April 24, 2016 12:00 PM
Joined: 11/30/2011
Posts: 4341


The problem with a dog is you need to worry about taking care of their needs before yours if you truly care about the dog. Size is by far not the issue as he is less the 2 pound at 15 weeks. Maybe grow to 4 pounds if lucky. 

 


jfkoc
Posted: Sunday, April 24, 2016 1:44 PM
Joined: 12/4/2011
Posts: 21004


Ay, there's the rub!
ndhme
Posted: Sunday, April 24, 2016 2:19 PM
Joined: 5/31/2015
Posts: 1159


When my DH was diagnosed, we had a 6 mos lab mix at home.  The neuro-psych and neurologist were pleased to hear that as they felt it was good for my DH.  And he was, until about mid stage 5 or so.  At that time he started to ignore the dog and found him bothersome.  He would yell/lash out at the dog for no reason...and this was his buddy.  They had been inseparable for years.  Eventually my DH would no longer pay any attention at all to Max.  Max would put a ball on DH's lap or just place his head on DH's lap for attention and DH just sat there...it was like he didn't even know what to do or recognize the ball.  But Max still stayed close to my DH and became my alert dog.  When DH started to wander at night, Max would come nudge me.  If DH went to the back or front door, Max would bark.   And as my DH declined more (mid to late stage 6), Max started getting sick.  He got depressed, would get sick after eating and was losing weight.  And after my DH was placed, it got worse.  End result he ended up with something similar to crohn's disease from experiencing the stress of watching his master decline (he is fine now, after multiple meds and stomach surgery).  For my DH, having Max in the earlier stages was wonderful because as he was losing the ability to do things around here that he did all our lives, he could still take care of Max and Max's needs.  It gave him a purpose and I believe kept him calm. 

But, I agree with Judith, the spouse/partner, needs to be on board with having a dog as we're the ones that oversee the care of the dog and eventually are completely responsible for the health and well-being of the dog.  To include having to clean up after them, walking them, take them to the vets and groomers and keeping them active too. 


a_step@a_time
Posted: Sunday, April 24, 2016 10:54 PM
Joined: 11/21/2015
Posts: 237


NDhme, thanks for sharing.

we took in an adult cat when my parent was sick (still a little early on).  The cat had a way of playing soccerball with herself.  She was entertaining to the household.  We had a hired part time caregiver who happened to love pets and helped take care of the cat needs too. We very much appreciated!  We think the cat was a good companion.  The caregiver ended up taking home the cat when my parent went to assisted living.  Worked well for all. ( The caregiver was happy to have the cat.)


a_step@a_time
Posted: Sunday, April 24, 2016 11:04 PM
Joined: 11/21/2015
Posts: 237


.... I should add, that our family always had pets growing up.  So maybe a pet would not work as well for a new pet owner that has dementia.
llee08032
Posted: Monday, April 25, 2016 7:40 AM
Joined: 5/20/2014
Posts: 4408


I would suffice to say that the Dr was speaking from a practical and "scientific" standpoint about the dog. Michael the new dog like a new baby, does have many needs and there is an adjustment period for the humans in the household. Take that adjustment period for a PWD and X that by 100. I hope in a couple months as he or she sleeps on your lap or gives you the ball you will feel it was all worth it. 

Now the "art" of loving a dog and having it love you back is something else to be considered. I am making plans to rescue another dog in the near future (maybe 6 mos-a year) if I can hold out that long.

Bill, I hope to see you back on the board when you feel ready. 


The_Sun_Still_Rises
Posted: Monday, April 25, 2016 9:06 AM
Joined: 7/24/2015
Posts: 3020


Other than for you own peace of mind, it does no real matter know which one it is...be cause course an outcome same.  All true dementias are 1) progressive; an 2) fatal.  An yes, having a doctor tell you...eve when you already know...still hits like a ton of bricks. 

Hang in there.  Do some nice things for you self...while this time passes.  Eventually you find you feet gain.  But this a healing time..be gentle you self.

I have found GREAT benefit getting way from dementia community.  By no focusing on it, allows me have life where IT is no the main focus.  I am just me...struggling do my tasks.  If no one says word...I almost forget have it...which is real nice. 

You likely have many many years where you will still be prett ok.  Drs tend look at the negative of it all...an do no real have suggestions how live WELL with this dx.  Eve this site is a bit depressing in its view.  I real suggest that you look in DAI (dementia alliance international) an try get in their groups...meet some us online...see no so bad.  They all bout how live WELL with this dx...an retaining our humanhood.

Some on this site are real advocates that as well.  Remember, you are always still you...no matter what a doctor or a report shows. 

Have a good break...take it easy, take care you self. 

<3


The_Sun_Still_Rises
Posted: Monday, April 25, 2016 9:17 AM
Joined: 7/24/2015
Posts: 3020


PS - I vote get the dog.  Just be cause you, or others, may no understand or imagine what dog can do for you....dog WILL do for you when time comes!

Service dogs are no like regular dogs...they tick in diff ways...they real live for help you.  They will know you need before you can fathom what it be.  They will understand you when you can no speak words.  They just get it, an you, in ways no one else will. 

I can no say enough my Bodhi, or how helpful he has be come my life.  I had had one vision his use when got him started training.  As my need progressed, HE adapted, HE found other ways be helpful...an now I can no get by without him. 

It can be weird (illogical) rely on dog.  Like if I go out walking, will HE real be able get me home??  But sure as sh*t, HE get me home...like it is what he do eve day.  When you do need them...an they there you...the emotion you get is well beyond words describe.  That HE can do for me what no human could...is like no thing else in world.  The depth of gratitude I be have HIM an what HE do...an independence I can still have is amazing. 

Plus, if no thing else...it prevent social barrier that may come up in dementia where peop shy way from you...eve one wants come pet the dog...an eve one smiles. 

When I was first on this site...I read many caregiver stories bout them taking husbands shopping them...an the wander off, an the put things cart, an the try pay.  Well, I have my dog in stores me...as I get confused, my focus goes on dog...an dog leads me thru.  An dog happ go back car...so I would neve wander off, eve if I did get separated my peop. 

So do no listen the nay sayers...you get you self that pup.

<3


Iris L.
Posted: Monday, April 25, 2016 2:14 PM
Joined: 12/15/2011
Posts: 18210


Bill, I have never found this site to be depressing, except for a few individuals.  In fact, this site has been the only site that is uplifting and positive, and offers a reason for hope.  All thanks initially to Mimi S, then to others.


Sometimes newcomers don't have our perspective, because they are suffused with the negativity of the outside world, or for other reasons of their own.  But here on our board, we can tell our own stories based on our own experiences, and uplift each other.  For this, I am truly grateful.


Iris L.


a_step@a_time
Posted: Monday, April 25, 2016 10:47 PM
Joined: 11/21/2015
Posts: 237


HHow does a person cope/accept the official diagnosis?... when we already KNOW we sick, and people around us deny b/c doctor refuses to diagnose for so long....  So we get stressed and made to believe it is a passing illness or does not exist....  "Hypochondriac".

I Know something wrong with me and feel being denied my right to accept and face facts, being told its all in my head and friends and family deny anything wrong with me b/c no diagnosis by professional.  Ugh


Iris L.
Posted: Tuesday, April 26, 2016 1:09 AM
Joined: 12/15/2011
Posts: 18210


I  learned a long time ago to share my medical history on a "need-to-know" basis.  So far, no one needs to know about my sensitive medical history.  It's safer this way. There are vultures lined up to take advantage of vulnerable seniors.  Why broadcast to the entire world that I am vulnerable?  It's enough that people know I have lupus.     


People who have a trustworthy significant other may feel comfortable sharing with that person.  But the general public?  No.


This is my own opinion based on my own negative experiences with disclosing in the past.  Other members have had better experiences.  But from now on, I keep my mouth shut about my medical history.


Iris L.


Michael Ellenbogen
Posted: Tuesday, April 26, 2016 6:22 AM
Joined: 11/30/2011
Posts: 4341


I believe it is import to come out and say you have it. Most of my friends who did said they felt so much better after it. But one needs to be smart on when they do that. For example if they are working they need to take the proper actions before disclosing that to an employer.  If your medical records do not have the diagnoses I would also get other insurance before it is to late. Once you do let others know you will become a target for sure by scammers. I have many because I am in the public eye. I would not trade how I did it for the few idiot scammers
Mimi S.
Posted: Tuesday, April 26, 2016 8:41 AM
Joined: 11/29/2011
Posts: 7027


I have never regretted disclosing, although I was retirement age when I was.

I have taken it as my mission in life to educate others about the disease, especially the importance of early diagnosis and the implementation of Best Practices.

Since I have disclosed, I find it is easier for others to supply the missing when I am struggling to remember. I live in a small town. If I don't show up for an appointment, and I am an on-time person, they call. 

I recall one incident. My PT appointment was always at 10 AM.  Once they had to change it to 9 AM.  I got up and stepped into the shower, aware of the appointment. I got out of the shower and the new time was gone. I merely thought: gee I have more time to get on the computer before I leave. Shortly after 9 AM the phone rang. The secretary at PT reminded me.  After that, the appointment was always the same time.  


Iris L.
Posted: Tuesday, April 26, 2016 11:46 AM
Joined: 12/15/2011
Posts: 18210


Some patients have good support.  Other patients have no support or bad support.  


We have to be aware that some people are more vulnerable than others.  


If I were to sit around and obsess about how I don't have supportive people in my life, I would be mentally traumatized.  I accept the reality of my situation, and devise strategies that work for me.


Iris L.




The_Sun_Still_Rises
Posted: Friday, May 6, 2016 10:32 PM
Joined: 7/24/2015
Posts: 3020


a_step@a_time wrote:

HHow does a person cope/accept the official diagnosis?... when we already KNOW we sick, and people around us deny b/c doctor refuses to diagnose for so long....  So we get stressed and made to believe it is a passing illness or does not exist....  "Hypochondriac".

I Know something wrong with me and feel being denied my right to accept and face facts, being told its all in my head and friends and family deny anything wrong with me b/c no diagnosis by professional.  Ugh

------------------------------------------------------------------------------------

Hi,

I personally think it a real horrible thing that doctors do this...although I do understand their reasoning do it.  An I am sorry it is being done you.  Unfortunately, they no get what their doing puts you (an all the other peop they do it on through). 

For many years I dealt with a "mystery" physical illness...I got worse worse, weaker weaker...I was mostly bedridden an had use walker get round...my leg full dragged.  Doctor after doctor shrugged shoulders. 

Now I have very good doctor, she very kind helpful me...an I finally have a diagnosis an medicine that help me.  She has explained, an I believe her...that doctors tend hold off give you diagnosis (esp a dementia dx) as they think it will some how limit our care or be worse us (in ways I can no longer describe words).  I get that, I real do...an I am sympathetic these sentiments that I have since heard echoed from many diff doctors. 

But for us patients it is whole diff story.  For us, we are denied treatment.  We are denied a support group.  We are denied research.  It hard.  AN...we can no get on our lives.  We stay stuck try find answer. 

I languished for 6 years with no answers.  When I did finally get both my diagnoses...I went back an asked peop, like my physical therapists who had worked with me for years an knew intimately of my brain struggles...why did you no suggest dementia me???  They say, be cause they found it too sad tell me.  WTF?!  Now, I love them dear...an I compassionate them...but I can no help thinking what I could have done Aricept 4-5 years go.  Or how much nicer it would have been be able get my affairs in order when I was in earlier stage.  They...those who knew an worked with me who knew, or who suspected an said no thing...they were try be kind me, but they did no do me an service this way. 

Eve this day, I struggle find words say or write convey my feelings thoughts this.  But all can say is, I get it...boy oh boy do I get it...what you say here. 

How do we cope?  I do no know how others cope it.  Me, it hit like ton bricks...eve though by time had testing I knew what probably was (be cause what test was for).  It one thing know you have trouble brain...it a whole other thing some one else tell you in such fine lengthy detail you have trouble you brain.  It hit, it hurts...an then you (hopefully) move on. 

When I was first dx'd I got real involved dementia community...an it was real nice meet many peop, find no alone this...get passionate the issues.  But then I found the constant always attention on this...that I have this...started wear me down.  So I got off internet...an forgot I had it...some of best time my life since dx.  Then it was just me an my struggle with my day.  Like if you old an creaky...it just way life is...or if it hot...it just way it is. 

What I hold onto is...I am still me.  Sure I struggle more as I go on, but I am still me.  I still enjoy the warmth of sun my face.  I still love see baby smile an hear her laugh.  I love things budding growing in spring.  I love blue sky.  Eve thing I hold dear inside me...still there.  So now I try, on purpose, no get lost or trip on that some things a struggle me...an I try keep forgetting the D word an A word.  But this is just where I am at this day...who knows...in month two I may be some where completely diff all this. 

<3