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55 with Early Onset.
Joe christensen1960
Posted: Monday, September 26, 2016 9:24 AM
Joined: 9/26/2016
Posts: 18


ID like to know that being under 65 years opd, most programs are shut off from me.  Alzheimers association here in LA doesnt have a clue as how to help me.  Giving me pamphlets doesnt do a thing.  Ive asked for help, but because im not on medicare yet, they dont know what to do.  This association says it wants to help people, but giving me handouts and brochures doesnt help.  I dont have a responsible health careperson helping me, so these people just sit on their butts not knowing what to do.  A fdiend of mine who is 57 gets the same treatment from these people.  One thing they did want from me was a donation.  Yeh im rolling in money.

 


Iris L.
Posted: Monday, September 26, 2016 12:07 PM
Joined: 12/15/2011
Posts: 13919


Welcome to our online support group, Joe.  You will find great support here on these message boards.  The "Younger Onset" board is the most active, although members may post on any board.


There is not much support for any PWDs (persons with dementia) anywhere.  We have to cobble together information from various sources and also from sources meant for patients with other diseases and from sources directed towards caregivers.   That's why this online support is so important.  I have learned so much from my fellow members and have received so much encouragement.  I can say that the support that I have received on these boards has changed my life!


The Alzheimer's Association provides general education for the public.  I also received a packet of information that was very helpful.  In addition, the Alzheimer's Association provides an invaluable service called Care Consultants.  These are social workers with special expertise in care for the person with dementia and cognitive impairment.  You can ask question and receive specific advice for your particular situation.  They can refer you to local resources and help you in many ways.


You must ask the volunteer who answers the Helpline specifically to let you speak with a Care Consultant.  I am in the same situation as you.  I also live alone with no family members or other support close by.  Several times I have called the Care Consultant for help.  Once I was referred to a local social worker, who visited and helped me for almost two years.


For most of us, this will be a long journey.  We have to learn to live with dementia.  I don't know where you are on your journey, Joe.  Have you gotten a diagnosis yet?  Have you had thorough medical and neurological evaluations?  The diagnosis of the dementias is a "rule out" diagnosis, after all  other possible medical causes, including drug side effects, of memory loss have been ruled out.


My own diagnosis is cognitive impairment not otherwise specified.  I was informed on this board that following what we call Best Practices could improve my functioning and prolong the early stages.  I am very satisfied with my progress, because this is exactly what is happening with me.  My functioning has been greatly improved, and I am plateauing.  We on this board promote Best Practices; it is not promoted so much on the outside.


What I am trying to let you know is that there is hope.  We must get a diagnosis, and proceed from there, and maintain our encouragement by receiving support.  Please join the rest of us patients on the Younger Onset board.  Please let us know more about your story, and where you are in your journey.  We are here to help you.  Ask questions.  Read the other threads.  And please your friend to join us here, also.


Iris L.


Joe christensen1960
Posted: Monday, September 26, 2016 12:54 PM
Joined: 9/26/2016
Posts: 18


Thank you Iris.  I was diagnosed with early onset Alzheimers.  Unforrunately here in Los Angeles the services are all 99 percent health care giver or support.  There arent any services with social securoty like home care, because i was told im under 65 and inelligable for assistance, unless i am 100% incompacitates.  How dumb does that sound.  I already need aasistance in a big time way, but i have to pay out of my pocket.  When i ask for help, the first thing these people have done, is ask me how im going to pay, or make a donation.  Bunch of unhelpful people here is LA. All i want is some help but i get songs and a dance.  I need someone to help me navigate this new world that im living in. Seriously, with early onset Alzheimers for years now.  The medications for Alzheimers have stopped working and im on the down slide.
The_Sun_Still_Rises
Posted: Monday, September 26, 2016 2:08 PM
Joined: 7/24/2015
Posts: 3030


Hi Joe, and welcome the forum.  I also have young onset...and have has a similar experience as yours. 

It is helpful to understand that the Alz Asso is primarily focused on caregiver supports, and really do not seem all that interested (beyond lip service) of actually helping those with young onset...or the person with the disease.  This is, the bane, of MANY disease orgs...unfortunately.  Their main goal is to raise money...again, not for us, but for caregiver supports...and vacations.  This is true of Autism, and Cancer orgs as well.  So if you are frustrated...trust me, you are not alone.  And, I am sorry....as this is not the way it should be. 

There is 1 org that is founded, by people with dementia...for people with dementia...which is Dementia Alliance International...and they run weekly support groups via video, where you can meet up with other people, like yourself, with young onset. 

We, the surprisingly few of us who are on here, also have these forums with which to support each other.  Some, like Iris, find this enough for her...others would like more.  It is all a matter of individual preference. 

So, we the people with Young Onset, have largely been having to pave the roads...and fight against the negative stereotypes (including those perpetuated by the Alz Asso) of what it is really like, and what it really means, to have Alz or Dementia while you still might be working, raising kids, and/or head of household with a mortgage...as it DOES certainly present us some unique challenges. 

I would highly recommend the book, Dancing With Dementia, by Christine Bryden....it was the first one I read after being diagnosed, and she has lived on quite well after diagnosis which really gave me a lot of hope and inspiration to do the same. 

Again, welcome to the forum.


EO Caregiver
Posted: Monday, September 26, 2016 2:32 PM
Joined: 3/16/2015
Posts: 2


Joe, I am a caregiver to my wife.  She had Younger Onset ALZ.  We are both 53.  I looked into getting help from Soc Sec.  They said my wife qualifies to be disabled, but because she has not worked enough quarters and because I am not old enough yet, then she cannot get any financial help.

I also could not get any help from the AAssoc, mainly because they do not gear anything toward Younger Onset people or their "younger" spouses.  I have to still work and all their support meetings are during the day.  No help there.

As far as the financial help, I ended up refinancing my home and getting a cash out loan.  That money should help to defer some costs.  Also I am looking into Home HealthCare.  My current medical insurance covers it.  I just have to look into what is needed to qualify to get it.


Iris L.
Posted: Monday, September 26, 2016 7:08 PM
Joined: 12/15/2011
Posts: 13919


Joe, I fall under the Los Angeles chapter. I must admit they were not helpful at first other than sending the packet of information.  So I called National in Chicago, and was referred to a wonderful Care Consultant in another chapter here in California.  She made a referral for me to an organization called Independence at Home, who supplied the social worker.  Independence at Home is for people over age 60.  They also have a program that covers adults with disabilities from age 18 to age 59.  Independence at Home falls under the auspices of SCAN.  


Are you still working, or have you had to quit or were you let go?  If you qualify for Social Security, you should be eligible for a Social Security Disability Insurance pension. This is for adults who are unable to work for medical reasons and is separate from Social Security for retirement.  Your doctor must state that you are unable to work.  The Alzheimer's Association has made it possible for PWDs under age 65 to request Compassionate Allowance, which fast-tracks their application.  This is specific for Younger Onset Alzheimer's Disease patients.


I would like you to post on the Younger Onset board and post more specifically about what type of help you are seeking.  The beauty of the message board system, is that you can tell your situation and ask for advice and several members who have experience and are knowledgeable will answer and give you advice.  You are not left adrift.  Make your question as specific as you can.  I have posted many questions and concerns to my fellow members, and I have never felt abandoned by them.  This is the place to be for answers.  The reason is that the members here are in the trenches, and truly know what is going on in the dementia world.


Iris L.


Mimi S.
Posted: Monday, September 26, 2016 7:35 PM
Joined: 11/29/2011
Posts: 5063


Welcome Joe,

You have been getting some great advice and I have non left to give.

The National Organization is aware of the difference in available services from chapter to chapter. It is working on how best to make all services available to all. 

Do try the other organization iris mentioned. 

And do let us know more specifically what you need help with. We can brainstorm some possible solutions.

Do learn as much as you can about Alzheimer's if that's what your diagnosis is.

Also, do you have a copy of your neuro-psych results? Can you figure out in what areas you have most problems? What area did you score highest in? Then together, we have to figure out how to use your strengths to help compensate for your weaknesses.

We want you to realize the truth in the saying on the bracelet that is always on a wrist: A REASON TO HOPE.


Iris L.
Posted: Monday, September 26, 2016 7:52 PM
Joined: 12/15/2011
Posts: 13919


The_Sun_Still_Rises wrote:

 Some, like Iris, find this enough for her

I don't understand this statement.  But I don't have time to follow up on it, because I am preparing for my trip to China in a few days.

 

Iris L.


The_Sun_Still_Rises
Posted: Monday, September 26, 2016 9:01 PM
Joined: 7/24/2015
Posts: 3030


When you apply for SS Disability....ALWAYS do BOTH Applications for RSDI (from working) and SSI (for simply being disabled).  That is always a good rule of thumb.  This way, if they reject one...like ie the quarters you worked, or how long ago you stopped working...you can still get the other one. 

Thankfully, in this country, we do take care of our disabled.  Unfortunately, it is not always easy...or common knowledge HOW to get that help...and most along the way do little to guide you.   

SSI may, however, take the spouses income into consideration. 

IF a person is working when diagnosed, workers long term disability is actually the BEST bet for most people...with SS second.  Ideally, you would get long term disability from work until age 65, at which point you'd get retirement from SS (which pays far higher than disability). 

For those who are low enough income...SSI does help.  Also Medicaid in addition to Medicare.  There is also a Waiver program in each state through Medicaid which will help procide you workers in your home, so you can get some help to stay functioning. 

It a very sad state of affairs when it the people with Dementia that have figure out, on they own, how to live with Dementia...and indeed, thrive.  But thriving is possible. 

Be aware, that it generally takes us a much longer time to process things...and attend to the simple tasks of getting one's finances squared away, and getting our affairs in order.  But the old saying is, the way to eat an elephant is one bite at a time.

After that...it is simply attending doing the things in life you want do, and finding ways keep doing that. 

Most people come here looking for something to give them a lead on how to LIVE life with this disease in our brains...but get told merely call the Alz Asso...like they have some magic pill...which in turn just sets one up for epic disappointment.  I am so sorry about that. 

The Dementia Alliance International group...although offering a weekly support group...really doesn't offer anyone anything on how to live. 

2 non-dementia people, HAVE, taken the time and care to really get to know people with dementia and do spread the word how to really help us...they would be Teepa Snow (for when we more advanced) and Dr. Allan Power.  Both are tremendously respectful and knowledgeable.  But, again, they don't really have much in the way of how the heck does one LIVE with it. 

Those who do seem to find ways to live with it...and talk about it on the internet...it always comes off to me like, look at me, I so cool...rather than tell another how do the same. 

As far as my knowledge, no one has written a So You Have Been Dx'd, Now What?  The usual advice is Alz Asso oriented...and by that caregiver oriented...of get you affairs in order (since you caregivers need you to do that so they can take over). 

No one says...ok, so get a handled on you dx...this is what it is about...this is what it will progress like...these are the challenges you will face in the future.  No one says...this is what you need know about the way they care for people like you (like how they often drug you with black box warned drugs in order sedate you...or lie you, rather than realize you have an unmet need...like maybe you cold or are in pain).  These are things you need know.  No one says, hey, you have just been dx'd this horrible terminal thing...now go see how the caregivers feel about you - really...and be prepared, because it worse than simply knowing you going die.  No one says, aside from getting you affairs in order...you had better write a really detailed CARE PLAN...because there will be a day that you will no be able talk...and the people caring for you will no know how care for you...so you will need teach them, preemptively.

No one talks you about end of life options...or the fact that you HAVE options.  This makes most generally very uncomfortable. 

No one talks to you about how to continue functioning in life safely...instead, in general, they are scared of you...simply by virtue of you dx...like suddenly you going burn the house down. 

No one tells you that you are exactly the same person you were before you were dx'd...or just how radically hard a concept that will be for you hold onto...as literally EVERYONE'S view of you will change suddenly...and you will no longer be who you always were before. 

No one tells you how grapple with that grief from how you went one day from being you...and now are suddenly a ghost in everyone's eyes...that they will cry when around you...because they soooo sad...like this harder for them than you.  No one will tell you, that even though you just got dx'd with a terminal dx...there will be no party for you...no one come help with the lawn...make you smile...or just know you suffering.  No, instead...you will have comfort them. 

No one will tell you just how hard it is...that no one in your life really gets it.  Or how you, the one with the disease raging in your brain, will have explain it them...again and again. 

No one will tell you...that now you dx'd...people around you will fear you. 

We try tell each other.  However, this the Alz Asso forum...and I have never found it that welcoming or inclusive of "real" talk on how it is...as even in our own little sections over here...the caregivers intrude, non-understanding, non-accepting, feel threatened by our feelings and thoughts...shut us down.  So what you get is a watered down version of "call the Alz Asso..." like they know something. 

Welcome the world of Young Onset...where the only people helping us learn live with it is other people with the disease.  


Iris L.
Posted: Tuesday, September 27, 2016 12:25 AM
Joined: 12/15/2011
Posts: 13919


Joe, life with dementia will certainly be different.  Many of us have learned to light a candle, rather than curse the darkness.  It's up to us which path we want to take.


Iris L.


Mimi S.
Posted: Tuesday, September 27, 2016 7:04 PM
Joined: 11/29/2011
Posts: 5063


Amen, Iris. And one is a wonderful way to live day by day.
BlueSkies
Posted: Wednesday, September 28, 2016 1:30 AM
Joined: 2/24/2016
Posts: 569


Perfectly said Iris.  I am also lighting a candle.
Mimi S.
Posted: Thursday, September 29, 2016 7:01 PM
Joined: 11/29/2011
Posts: 5063


For all those with the disease:

 May chapters have call in programs for those of us with the disease. Not as good as in person, but you do get to know the folks on the call and it is a good place to chat, vent or get information.


The_Sun_Still_Rises
Posted: Friday, September 30, 2016 8:04 AM
Joined: 7/24/2015
Posts: 3030


A number of local chapters, in general, the ones who actually care provide services those us with the disease...are in the process of breaking off from the Association. 

There are also many groups and orgs formed by people with the disease in order provide support.  Dementia Alliance International, and the FTD groups offer weekly support groups via video...which is a great way connect and find resources and learn how live with this.


Mimi S.
Posted: Friday, September 30, 2016 9:28 AM
Joined: 11/29/2011
Posts: 5063


The_Sun_Still_Rises wrote:

A number of local chapters, in general, the ones who actually care provide services those us with the disease...are in the process of breaking off from the Association. 

Dear Sun,

I strongly object to what you wrote in the above quote. If you had only prefaced your remarks with the phrase, in my opinion, I probably would not be responding.

There are many reasons why a number of chapters have decided to break from National. From what I understand the reasons have more to do with finances than a difference in desire to provide services for those with the disease.  

The ability of chapters to provide care for those of us with the disease, in my opinion, has more to do with the ability of the chapters to raise the required money than their lack of interest in providing services for those of us with the disease.

I have been active in the Alzheimer's Association for a number of years. I have met many folks in the organization at the National, State and local level. I have found all empathetic to my diagnosis and anxious to help all of us, no matter what stage of the disease we are in.

Services for us are improving slowly.


The_Sun_Still_Rises
Posted: Saturday, October 1, 2016 12:52 PM
Joined: 7/24/2015
Posts: 3030


Mimi, I am entirely un interested in your negativity or desire to pick a fight...that kind of drama is not needed here, and is against forum policy.   

I hope you are having a wonderful weekend, and enjoying this beautiful autumn weather.  We just took my grandbaby the pumpkin patch and she got have her first pony ride.  Indeed, Mimi, life way way way more short than cause drama.  Let's keep this a drama free zone...in order support people with dementia, because this should remain a supportive safe place. 

<3


dayn2nite2
Posted: Saturday, October 1, 2016 3:12 PM
Joined: 6/20/2016
Posts: 609


What Mimi said is NOT "against board policy" at all.
The_Sun_Still_Rises
Posted: Saturday, October 1, 2016 4:53 PM
Joined: 7/24/2015
Posts: 3030


dayn2nite2 wrote:
What Mimi said is NOT "against board policy" at all.

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

I see you have had make yet another account.  I am equally uninterested in your negativity and "baiting"...and yes, it IS against the forum policy for you be picking fights. 

Again, I hope you are having a lovely weekend on this beautiful day.  In case you forgot Day2nite2, this section is for those of us with the diagnosis...and is intended be a safe place for us.  



dayn2nite2
Posted: Saturday, October 1, 2016 5:27 PM
Joined: 6/20/2016
Posts: 609


We can both post on this board, we're the same anyway
The_Sun_Still_Rises
Posted: Saturday, October 1, 2016 5:58 PM
Joined: 7/24/2015
Posts: 3030


What a beautiful day it is this day...the sky so blue, it like 75 out, the leaves are turning color.  The fence is up and so our wonderful beautiful autistic/sensory challenged grandbaby can FINALLY play by herself in the yard...away from us...and enjoy spending most of the day outside as she loves.  She loves picking flowers (I love growing them) and carrying them around.  She uses her tiny little fingers pick up leaves and carry them around.  She say "leaf"...she has few words, but this one of them.  We are starting get a handle on her sensory issues and starting be able read when things more than she can handle and are being able moderate her day...it just so glorious that she is FINALLY able have some pretty good days.  It really cool starting watch her blossom. 

What are you doing Day2nite2 and Mimi enjoy the autumn weather??


Joe christensen1960
Posted: Sunday, October 2, 2016 3:42 AM
Joined: 9/26/2016
Posts: 18


Hi all, thanks for the posts.  For anyone who would like, Leeza Gibbons here in Burbank, CA has a wonderful program at St Joseph hospital, for both care givers and we with Early onset Alzheimer's.  Her site is "Leezas care connection".  What a great place for me, and my care giver.  As we know, the Alzheimer's association mainly deals with care givers, as that's where they get a lot of their donations from.   Everyone, please remember, anyone can say anything here, we have the disease.  Some of us are angry, some sad, some indifferent, yet we all have the same disease, just at different levels, so please, respect what some one posts.  There isn't anything that someone writes that I won't read, as we DO have difficulty expressing ourselves, and I want to encourage us to get it out.  Rant, rave, get mad, I will respect you, as I go through weird days myself, where I'm angry, and I don't know why.  That is not our fault, nor anyone else's.  so please, let it out.  If you have helpful information for anyone of us, then please let us know, but also want to hear your fears, as mine may be different, and sometimes I just need to get it off of my chest.   Keep your head high, your doing the best you can, and you are loved, even though we may not realize it today.
camacho
Posted: Saturday, February 11, 2017 6:43 AM
Joined: 2/4/2017
Posts: 1


Am 52 years old was diagnose with Alzheimer a year ago have so many questions don't know where to start my fears in having to go through Alzheimer  in such an early age makes me wonder why me but I know am not the only one effected in my early age.  Yes I have notice some changes in my life which also scares me but knowing I can rely on others which I must find if their are trustable or not also bring me fear but alone I know I  cant cope with this disease I need answers and that's why am here
The_Sun_Still_Rises
Posted: Saturday, February 11, 2017 6:48 AM
Joined: 7/24/2015
Posts: 3030


Hi and welcome the forum,

Being diagnosed with Alzheimer's or dementia is VERY hard and can real send you for a loop for a while.   It is NORMAL go through many emotions after you are diagnosed and they are all ok.  There is no one way process being diagnosed with this. 

I am 48 and I have Young Onset Alzheimer's.  Those us who are younger present very differently.  We are still in the prime of our lives.  Many us are still working.  We often still raising children, or caring for our parents.  Very little is written for us. 

I highly recommend reading the book, Dancing With Dementia by Christine Bryden.  She writes about what it is like have this so eloquently and she was the first one who gave me the feeling like there is life after diagnosis.  I got it from my local library. 

Forums can be hard navigate at first.  It can take some time get used it.  At the top above this is a link called "Discussion Board" and if you click on that, you can see all the forum sections this forum.   Because you not 65 yet, you have what known as Young Onset....and the Young Onset section is the most active of the 2 Alzheimer's sections.   So you might get more responses that section.  

I am also going start a new thread so you can get a proper welcome...as sometimes people don't revisit old threads. 

Again, welcome....and I look forward getting know you and helping answer some your questions if I can.

<3


alz+
Posted: Thursday, February 16, 2017 8:55 AM
Joined: 9/12/2013
Posts: 2625


Joe - posted in 2016 but now showing up? did dates get screwy agaiin?

*********

This blog set my course and may give you some ideas on how to help yourself and others.

https://skunkpharmresearch.com/alzheimers-mom-and-cannabis/

please come back and let this community help you find some personal solutions compatible with what your needs.

love and courage

In California as a legal state you can get a card and have cbd oil delivered to your home.



TheSteven
Posted: Wednesday, February 22, 2017 9:54 PM
Joined: 10/11/2014
Posts: 141


Welcome Camacho,

I guess you read Joe's post and added to his post. I hope you or Joe read this reply. I was diagnosed at 56 with Younger Onset Alzheimer's and after removing my mercury dental fillings have stopped its progression and reversed some of the symptoms. I don't know if you have any of those dark dental fillings but if you do you might want to read the information in my blog after looking at the information in the links below. My blog also lists the books which have helped others diagnosed with Alzheimer's.

See

http://amalgam.org/education/scientific-evidenceresearch/results-removal-amalgam-fillings/ or

http://www.fda.gov/ohrms/dockets/dailys/02/Sep02/091602/80027dde.pdf

I have more links to this type of information and videos about this in my July 4, 2015 blog entry at http://thestevenalztreatment.blogspot.com



Joe christensen1960
Posted: Tuesday, February 28, 2017 5:30 AM
Joined: 9/26/2016
Posts: 18


Hey all, I haven't posted in awhile, as so much has been going on.  My Alzheimer's is progressing slowly, hank God.  I have been fighting doctors like Neurologists, Pain Management, my General Practitioner over my care.  I have noticed that most of the Health care providers look and talk right past me.  Ticks me off to no end.  I have issues like; Insomnia, chronic pain, depression, etc etc.  

I have sleep Apnia, with machine and all, and yet I only sleep about five hours a night.  (Pain mostly).  So now the the doctors, I have chronic pain from severe arthritis in my neck.  They have me on Norco, three pills a day, so most f the time I living in pain.  So instead of dealing with the sleep due to pain, depression due to no sleep and pain, they put me on depression medication.  They said they don't want me getting addicted to pain medication....LOL...So what this tells me in the short and long term is, they are petrified of taking care of the pain, as it may cause falls, addiction etc.  I'm unable to work, drive, and some other things.  So to me, they don't give a crap about my pain, wellbeing, quality of life, but just what makes them feel good when they go to bed at night.  My biggest fear is that if they aren't treating me properly for pain now, even my caregiver is fighting them.  This tells me that when I'm unable to tell them I'm hurting, they don't give a crap, as they don't want to take responsibility.  I understand this country has a Hugh addiction proble, but you know, I'm not addicted to them, but unfortunately I'm now addicted to having pain.  Sounds dumb, but in a sense, they're telling me to live with it, and stop complaining about pain.  ALZ org has nothing on pain treatment, just for caregivers.  Not good.


The_Sun_Still_Rises
Posted: Tuesday, February 28, 2017 7:46 AM
Joined: 7/24/2015
Posts: 3030


Hi Joe,

As someone who also lives with chronic high levels of pain...and who has also had a history or less than helpful doctors, I soooo hear you.  I think, based on my 6 year journey through hell in the medical system before landing on a good doctor (been sick for 8 years now), that it VERY hard find a good doctor...and it really a matter of shopping around and being willing roll the dice a bit.  I always found that hard, because it would hurt so much when they let me down...because I could tell that I was dying and they just couldn't stop playing games. 

I don't think they need worry addiction in someone with a terminal illness.  Vicodin is the same as Norco but with a higher level acetaminophen...it do the trick for me.  The trick is finding a doctor who will rx it.  Realize that they have clinic politics deal with also...and that it their reputation they worry about in clinic than your health sometimes...unfortunately. 

The other is, you might consider seeing a chiropractor...sometimes they can do wonders with back pain. 

My back pain also interfers with my sleeping.  I have been considering trying melatonin.  It a hormone we make, so it not like a drug.  We give it my granddaughter and it does wonders for her.  I just like my awake time at night when it quiet. 

Anti-depressants can suppress your thyroid and make you further depressed.  So you might want consider asking for a thyroid panel....you really want them test your "Free T3" and that might give some insight in you depression.  Sometimes a little T3 rx is much better and safer than an anti-depressant. 

I have real learned that you almost have solve your own medical issues and then walk your doctors through it...like, I would like x, y , and z tests - unless you have a medical reason not give them me...and then if you were right in your guess, the tests will reveal what you need for them give you what you need.    In any event, avoid doctors with the bizarre notion of anti-depressants for pain...I read that as a neon sign warning that that doctor don't know the first thing about how the body works. 

In any event, it good seeing you checking in.  Hang in there.

<3


Joe christensen1960
Posted: Wednesday, March 1, 2017 5:37 PM
Joined: 9/26/2016
Posts: 18


Thanks, tried the chiropractor, anti-depressants, NSAIDs, etc, etc.  I've called the Alzheimer's Association, and they don't even have a clue.  It's a shame, as they only really care for the Car Givers it seems.  They just gave them a run around as well.  I'm not a self mediator, so I'm not into doing illicit drugs.  Tried all of the medical marijuana, nothing.  I've tried acupuncture, vibaring machines, cold packs, hot rubs, and even standing on my head.   (No way, just sounded good).  None of the Doctors at the Veterans Administration even know what to do, or whom to call.  My outside pain management doctor doesn't have a clue.  Everything that I have looked at for pain in Alzheimer's, suggests it's under studied, and no one is doing any research on it.  I did see a few medical articles saying that we at some point don't feel pain????  Did they ask the patient that can't speak, can't move?  There are some really dumb organizations out there that propose this, and some don't have anything to say at all.  Even the ALZ organization doesn't deal with this issue, as they are all about the caregiver.  Not one person ther could give me an answer, and these people are in Los Angeles.  When the Alzheimer's Association doesn't know, that means they don't give a crap, if they did, they would have had some information.  Who to call, any research places doing a pain study in Alzheimer's patients, Nothing. All they do is want me to try devices, see chiropractors, again, and everything under the sun, and giving the pain management information, so patients quality of life improves, even for a little while.  This sounds bad, but until someone in their immediate family has Alzheimer's, and pain, they will never know.  But if they did, they'd be screaming for pain relief for the parent, etc.  Someone in the Alzheimer's Association should get off of their ass, and help me find any information, or a place to call that can help.  My fear is dying in pain, because no one even cares.

 


Mimi S.
Posted: Wednesday, March 1, 2017 7:16 PM
Joined: 11/29/2011
Posts: 5063


Hi Joe,

I am so sorry that you have not received the hep you are seeking and feel the Alzheimer’s Association is to blame.  Have you tried calling our help line 1-800-272-3900 and ask to speak to a Care Consultant?

Because such a large proportion of those seeking help are caregivers and because so few of us PWD are able to be on-line, it may seem that the Association does not care and gives little help.  And yes, because we are so few, we don’t seem to have as many resources aimed at us. Those posting on caregivers are much more numerous than those of us PWDs who post.

Too few chapters have memory cafes or support groups for us. Some chapters do, at least, have call in support groups.having a run a group for  PWD in my small rural community, I can attest that finding a group with enough folks to have a group can be difficult; not enough diagnosed at Early Stage and sometimes those so diagnosed do not want to go public in a small community.

I have found the opposite to be true. I have been  taken special care of by my local office. I spoke at several local events and through the chapter was interviewed by local media. I have also been involved at both the state and national levels in various activities and media events. 

Did you know that the Alzheimer’s Association at it’s annual spring meeting provides free registration for the event?  This may not seem like much but it actually provides for all the expenses of those days , including food, except for the hotel room.  The is even a special meeting/get together for those of us with the disease.  A room is provided for our relaxation and a place to get away from the noise.

I don’t know that pain is something that is commonly associated with dementia and that may be the reason you have received so little help. 

I do hope you can find something for your pain.


Iris L.
Posted: Wednesday, March 1, 2017 10:06 PM
Joined: 12/15/2011
Posts: 13919


Welcome back, Joe.  I am also a chronic pain patient due to auto-immune conditions, and I also have sleep apnea.  I avoid narcotics.  I manage my pain with weight loss, dietary modifications (less starch), physical therapy, better sleep with use of CPAP, and NSAIDs.  I also had good response to a topical NSAID, Voltaren gel.  


You have to become flexible and seek out all possible solutions.  Keep a journal, and make only one change at a time, so you can determine how your body responds to a treatment.  I lost 40 pounds, and most of my recent pain went away.  Unfortunately, I have regained some weight back, and the pain is back.  So I am working my way to get the weight off again.  Before that, I was in constant pain all over my body--back, shoulders, hips, knees, all joints, also muscles.  I also use nutritional supplements.


Lack of sufficient, restful sleep can result in pain.  Nine hours is my optimal sleep time, but I usually get 5-7 hours.  I work on getting uninterrupted sleep.  Many men have a prostate problem which interferes with sleep.  You might want to look into this.


Another therapy that helped me a lot when I was in a great deal of pain with limited mobility was warm water therapy.  I attended a warm water pool three times a week.  At that time I floated on my back for about 15-20 minutes at a time, sometimes longer.  The buoyancy served to reduce the pain on my back and body.  I would say that this type of water therapy was a major treatment in reducing my pain load.


Unfortunately, the treatments I have come up with have been piecemeal.  No one doctor has given me a comprehensive pain managment plan.  I had to figure most of the pain management plan out myself.  You will have to do the same.  


Best wishes to you, Joe.  Don't give up.  


Iris L.


The_Sun_Still_Rises
Posted: Thursday, March 2, 2017 6:27 AM
Joined: 7/24/2015
Posts: 3030


 

Hi Joe,

Again - I soooo hear you, believe me.  It took me 6 years finally get dx'd for my physical issues and all that while, I really believed that when they fixed my body I would get my brain back also.  When I did get meds that helped my body (and my physical dx not one that kill you, so I thought, great I am going live)....I was sorely disappointed when it did not help my brain.  A month later I got a dementia dx and found out nope, I am going die anyways.  The ONLY thing an Alz dx had going for it - is that I now had an organization, with a walk - and at long last - a support group...or so I thought.  And yes, my disappointment was huge...because it was just that devastating for me...because I had been really hurting and thought that there might be light at the end of what had been a very hard journey.  But yeah, no...that wasn't what I found either.

I tried being very proactive in getting my life and affairs in order....after all, I took this dx very seriously and I was progressing very fast.  At he time I came the Alz Asso Forums, I was trying find day care for me and memory care nursing homes for me (but because I was just 47 at the time, and being told I would not be considered for Memory Care until I was 55...so 8 years, even though I needed it now)....and so, as someone said I should, I also called that f'ing 800 number....and yeah, no...they have no idea.  They don't keep a list of places, 'that would be more hard than they could do' (yeah, well try doing that with advancing dementia)...NOR do they advocate for places take those under 55.  The lady kept telling me the weekly support group and I must have reminded her 1000x that it was the Caregiver Group....which, every single time she insisted it wasn't was like rubbing salt in an open wound of just how under served our needs are.  When I tried say something on here about it - I was told on no uncertain terms was the Alz Asso a caregiver association only.  But it still hurt, a lot. 

What I have realized from my long journey, and you can take my words in heart....is that people just don't get it - they just don't.  Until you have sat in a doctors office, and had your doctor look you in the eye and tell you that you going die - you don't have a friggen clue what goes on inside a person when that happens or what we need in the aftermath that.  AND, worse is, if you will NOT listen those of us who have - who are patiently and kindly telling you what we need - you just simply going miss the mark by a long shot.  There a saying in disabled communities - Nothing About Us Without Us...meaning, if an organization do NOT have an affected person, or persons, on their decision making board actively guiding the direction of the organization - then they are going miss the mark...because how could they know, if they haven't been there?  They can't. 

And statistically, it illogical....because per their own stats, on a study that they ran...ONLY 1 in 5 of us is being cared for by family (so 20 out of every 100 of us)....so by serving ONLY caregivers...they serve the smallest of the smallest of minority of us (and very purposefully, and by design, leave 80 out of 100 of us out in the cold).  And, then again...only the caregivers are served so 99 out of 100 us are left out in the cold.  And yes, it makes absolutely no sense me either...because it would be soooo easy help us. 

One could argue that by helping and supporting our caregivers that they are preventing abuse and murders of us - BUT - I have not found that be the case.  When they perpetuate a "negative image" 80year olds with late stage dementia - they delay our diagnosis and thus prevent early treatment (their Feb 2017 study reveal that it take those with Young Onset an average of 3 years be dx'd).  When they perpetuate bad care practices (like that it ok give us FDA Black Box warned against anti-psychs, and other meds that are counter-indicated in dementia) they hasten our demise.  When they create and sustain a culture of caring for someone dementia is "oh-so-bad" they increasingly cause our caregivers only focus on the negative and thus burn out quicker and be more prone be frustrated and anger and resentful...which naturally then give rise more abuse and murder us....plus they increase placement of us in homes, which thereby increases practices such as "slow euthanasia," "chemical restraints," and "terminal sedation"....which kills us.   So the problem is just so much bigger and more pervasive than that they simply don't support us PWD...it is that they engage in and support practices that directly harm us.  And while that might not be their intention...it certainly isn't their intention not do those things.  It sort of like when a child say, "I didn't mean break the lamp," my answer the kid throwing the ball in the house is - "you didn't mean not do," as sometimes we have be mindful, and conscious, and purposeful in the things we do especially when creating and running an organization.  Indeed, one of the most fundamental things orgs do - is focus on the population that they serve....while they may do a lot of talking about the disease - the people with the disease are completely ignored, what our lives are like, whether anything they are doing is actually improving the day day lives of people with Alz....or even just simply, is what they are doing resulting in that PWD are more happy? 

On the other hand....have you heard about Dementia Alliance International, or DAI?  It a whole organization founded by and run by PWD for PWD.  They offer weekly online support groups and monthly educational topics.  You should consider signing up for them.

And chronic pain is a lot like dementia.  And OMG there not a word strong enough for how I feel about the quacks that think we don't feel pain!  I have been fortunate have doctors that rx me Vicodin so I have no had worry it....but every time (while I was trying find a doctor who had a f'ing clue how dx me rather than shrug shoulders and tell me do every fad thing that was killing me, like Vit D or supplements).  I was even told I had Lyme disease and was given 2 years of strong antibiotics that made me so sick I was largely bedridden...and nearly completely lost the ability walk.  I have a thick folder my medical record and stories share.  But again, people don't know until they have been there themselves - including doctors. 

I remember my sister who developed dry eyes (and granted, dry eyes suck) complaining around this time about this my mom and me...and I am sitting there all empathetic listening her (because that my nature)....and this was just as my Lyme treatment was over and I had survived hell....she turns me and say, "I finally know what you have been going through all this time..."  Oh yeah, REALLY?!  Because dry eyes really compare not being able walk and having drag my carcass along the floor and pull yourself up on the toilet (by the by, I have dry eyes also).  Just simply - people don't get it, unless they have been there....they just don't have a clue. 

As I say, I live with level 8 pain EVERY DAY...I have turn over every 10 minutes at night because it KILLING ME...the pain shooting down my legs, the nerves that are pinched from my degenerated low back.  Getting in and out car another one...it HURT sooo bad make the bend be able sit.  I have use my arms lift my leg in the car.  I have arthritis in my back as well as auto-immune...my low back inflamed and red and tender the touch - even my clothes hurt touching it.  Being at store, holding cart (which help me balance and walk)...is just enough make my low back grind...you can even hear it.  My pain levels get so high that I puke.  And it no just my back...it my hips, knees, feet, fingers, wrists, elbows...frequent migraines.  So yeah, I understand pain.

And yet....people EXPECT me be smiling, cheery, pleasant, kind ALL THE TIME no matter what.   They have NO IDEA the challenges it takes for me be smiling, happy.  Pain like a bad headache - it INTERFER with you ability think, see, hear....it there ALL THE TIME...and it drown out what people say.  I mean, they should try dealing with life while deep in a bad migraine and then tell me about it or when they on the couch sick with flu get up function and be cheery while doing it.  I do manage find a way be smiling and nice most the time...people who meet me have NO idea how much pain I am in, or even that I am in pain.  

I also do yoga stretches specifically designed stretch my fascia (which gets really tightened up on me), meditation, get therapeutic massages, do warm water therapy (I agree that back float with a floaty around head is heaven take the weight and pressure off my back)...as well as lay on pool noodle and do exercises strengthen my back.  And I see a chiropractor.  And I icing my back on and off through the day.  As well, I have found a sugar-free and grain and dairy - free diet real help me....but, because my back is crumbling and rubbing gether it simply pinch nerves...so there is pain regardless of my efforts.  Even with Vicodin I have pain still at levels most would find unacceptable.... but such is my life.

I do not usually share with people what I am going through....and when I do, I don't keep telling them or reminding them...largely because it so demoralizing have do that.  I mean, I am autistic, I have Alzheimer's, and I am in chronic high levels of pain - and yet, even knowing that, expectations placed on me are often unrealistic given that....and so I have learned early on in life - that you can know who you friends are, by those who take you words at face value...(like when you say, I live with high levels of pain), that they just accept that this is so, and when asked move heavy boxes and I say that I can't, they remember and get it....and they don't keep expecting that I can move large heavy boxes, or force me have KEEP telling them that I cannot, because I in pain.  I am probably not saying that well, but hopefully you get my point.

Vicodin bring my pain level down a 6...which is like heaven for me.  I still in pain, but I can get more done.  I pay for it after, because my immune system flares and makes things worse.  But people who see me when I on Vicodin remark how much better I look....which tell me that my high levels of pain are clearly visible on my face.

Here a video you might like....for know you not the only one. 

https://www.youtube.com/watch?v=rXjNt2bXZ6g

People who meet me have no idea what life have been like for me...or all that it took for me be able put on a warm smile and greet another.  No one know how much it have hurt me have give up all the many beloved pieces my life...or just how much my life have been painfully limited by my disabilities.  Or how much it hurts be left behind because I can't keep up or lack the social skills others expect me magically have.  But I have learned this one lesson and it have brought me peace in all this....and that is just simply this - I can't change it.  No one can wave a wand and make me better.  

From that I realized that I have options....I can lament what I don't have anymore...or....I can find a way find something be happy about.  One make me miserable....and the other bring me joy.  You see, the sun she still rises whether I am crying or am happy...whether I have pain or not, I can still notice that the sunrise is beautiful.  This may seem a simply philosophy....but it works for me. 

Those who say the "...give me courage accept the things I cannot change," line have clearly not experienced untenable situations - where there is no possibility of "acceptance"....one simply does not "accept" that one is dying....maybe one can accept it in a higher thinking philosophical way, but on a visceral level - the body simply cannot except it.  Perhaps it takes someone who have walked around a few times in hell for be know the way out of hell?  You don't "accept," you simply stop fighting with the fact it there.  And, if you can, you make friends with it.  I did that by imagining my pain like a large unlovable troll....and I imagined that I did what would naturally occur my heart do (as my heart have a soft place for those not loved), I imagined that I hugged it....and simply loved it.  After all, pain is my constant companion...the more I at war with that, the more miserable my experience of my life is.  If I don't fight my pain, but simply allow it be what it is - outside of my control - I don't have at constant war with it...and I can find some measure of peace in my life.

 You are going have shop doctors....if you make appointments just interview them, you can usually find their feelings on pain management.  I make the argument that I am dying anyways...plus my pain make me agitated and harder deal with.  Vicodin and Norco have NSAIDs in them....but the NSAIDs are so much worse you than the opiates...but none as bad for us as anti-psychs that worsen the dementia and can cause death - so I find some of the propagandized beliefs out there a bit illogical and silly.  You can always tell a doctor with a brain from a parrot by what they say about pain management. 

 

Anyways, it good hear from you again. 

<3


Joe christensen1960
Posted: Sunday, March 5, 2017 7:59 AM
Joined: 9/26/2016
Posts: 18


Hi Iris, I think you have missed all of my other posts.  Everything you said has been done and tried.  I have such severe arthritis in my neck, and surgery has been ruled out.  Every therapy, treatment, potion, lotion, device, water, heating pads, on and on.  I think you have missed the mark completely.  For two years, I have tried to get at least 5 o 6 hours of sleep per night, but the medical protocol for treating people is non-existent.  My Neurologist, Psychiatrist, Pain management, all say the same thing.  "Were not sure how to treat people with Alzheimer's".  

I again called the Alzheimer's Association, and was told they would send me pamphlets on depression.  Every doctor wants to increase depression medication, and still They are clueless as to why I'm depressed.  Severe pain while sleeping in uncontrollable. Tried every pillow, position, you name it, I tried it.  This forum is exactly why it doesn't work, as everyone has an opinion or solution that is good for them, and not for another individual.  I even went to a nursing home, and asked the head RN, "How do you treat pain on someone who cannot communicate?), and she told me that they don't unless there is a broken bone or something else that may cause severe pain.  She even said when a patient gets aggitated or frustrated, and lashes out, they pump them full of relaxants, and or anti-depressants. I asked her, what if an individual is in pain, and you know it, or a family member tells you, do you take care of the pain for quality of life, or ignore it?  She said none of the doctors believe that Alzheimer's patients feel pain, at a certain point.  She actually whispered to me, they know they are in pain, but are afraid of making the patient addicted.  You know how stupid that sounds.  

If you or anyone else With Alzheimer's accepts  the current lack of treatment for us with Early Onset, I feed bad fo them, It tells me you or someone else accepts everything's your doctor might say about you pain.  If It takes an aspirin for pain, and it comforts that patient for quality of life, fine, but I do not accept that me size fits all.  I don't see a lot of people on here really asking about quality of life issues.  I have to be an advocate for myself and others, and they hose that treat us like we're ghosts.  IF anyone knows of a program, that deals with us, and pain issues, I'm all ears.  Yes, the Alzheimer's association is there only for caregivers, nothing on their website has any substantial information for us.  I assume they don't think we can read.  Again the Alzheimer's Assciation wanted to send me pamphlets on Alzheimer's again, and I asked her if anything they would send me, pertains to my inquiry, and the counselor said no.  So I told her to not waste her postage, and asked her again, if she had anything from them in forms of paper, research, test, etc, and she finally said, were not here for that.  Great organization, that doesn't talk to the actual people they are trying to help.  She said it was mostly for image, fund raising, and getting donations.  At least the woman was honest.

What it comes down too, is getting treated for pain, as I know if the pain can lessen or disappear at night sleeping, there wouldn't be depression, agitation, sleepless night because of pain.  It just comes down to people listening and treating the ailments, that afflict people, with the total intention to hear that person, and give them dignity and quality of life.  As I said before, I don't want to be in such great pain at night, nor being ignored, because it isn't protocol.

I hope you are well,  Joe


Joe christensen1960
Posted: Sunday, March 5, 2017 8:15 AM
Joined: 9/26/2016
Posts: 18


Thank you, you have expressed everything I feel and said in this forum.  If we aren't our own advocates and speak up, nothing's will change.  I only ask my doctors for one thing, and to be able to not live in pain at night while I'm sleeping.  It always falls n deaf ears.  They are so worried about me getting addicted, they seem to forget, I have a terminal Illness, with unknown things that will happen.  I think they have a sense, that everyone dies, yours may be just sooner, so go away.  I'm tired of antidepressants being handed to me for pain.  Doesn't work doc.  So my fears may come true about being, staying, and dieing in pain, all because they really have no interest in me, but on their so called protocol, which when I have asked, there aren't any for the those with Alzheimer's.

Everyone tries to say, do this, do that, without even knowing myself and situation.  I'm there with you, trying to stay positive for my two friends, who are dumbfounded at how the doctors look right past me, don't hear me, or Them.  They come with me, maybe I just bring them to show how ingnorant even smart doctors can be.  Tired and in pain, from California.   


jfkoc
Posted: Sunday, March 5, 2017 11:08 AM
Joined: 12/4/2011
Posts: 11677


HI Joe...my sister is diagnosed with arthritis and has neck pain. This is what she sent to me to forward to you:

http://www.arthritis.org/living-with-arthritis/exercise/workouts/simple-routines/neck-pain-exercises.php

She asked me to tell you that  it took her a long time to find her rheumetologist (sp)


The_Sun_Still_Rises
Posted: Sunday, March 5, 2017 12:08 PM
Joined: 7/24/2015
Posts: 3030


Joe,

No only do I sooo hear you...I am right there with you.  Word. 

The sickest thing I have seen in the last 20 years, is gabapentin or neurontin which was originally marketed as an extremely strong bi-polar drug (it like 100x stronger than LSD) except it had far more side effects than lithium...has been re-branded as a "pain med"....LOL!!!!   And the poor Fibromyalgia crowd who likewise want be out of pain and know what going wrong them....they given this, for wit then their doctors treat them like nut cases (which only make sense since half them claim gabapentin help them with their pain proving they a mental health patient) and they get on their groups and whine that their doctors treat them like nuts.  Well, stop saying that a bi-polar drug helping you for pain then.  Oy. 

This is why it become extremely important for us, educate ourselves, understand the actual mechanics of the meds we taking....and how they work in our bodies. 

I am not surprised hear that Nursing Homes do NOT treat our pain.  I read the CG Sections and NO ONE tell them why we agitated either...no one say could be pain.  No one think try a little Tylenol and see if that helps.  It just NOT a part of the current Dementia Care Model in the USA...and that sucks for us.

A study done in hospitals after surgery also found that PWD are NOT given pain meds either (even though you now they in heaps pain after be cut open).  That PWD are more likely be given anti-psychs (which are black box warned against by FDA) treat our agitation and aggression due pain after surgery.  The anti-psychs are black box warned, because they increase our likelihood death - like 9 in 20 PWD will stroke from them, the rest it will hasten the dementia.  About once a month someone reports putting their PWD in geriatric psych for agitation and aggression, they were walking, talking, feeding and toileting self when went in, only be bedridden 3 weeks later and soon dead. 

It make me angry the practices that the medical industry have of killing us, and yet they won't support the Right Die Laws for us.  Wait until you read up on the practice of "slow euthanasia" done in nursing homes, or "terminal sedation" practices in palliative care. 

It make me sick.  Real sick. 

Yes, I see that as well...there is something seriously surreal about those who have pretended for so long it ok what they are doing us, that they actually believe it now....Welcome, wait until you find out that the lunatics are running the asylum.  You have get used that the sky actually some other color over here...like orange with pink polka dots.  

I have said since soon after I was dx'd, when I was met with how f'd up things are in dementia care, that finding out that I am going progress and lose my abilities and die bothers me far, far less than how we TREAT PWD while we still living. 

There no even a, "So You Have Been Dx'd Dementia, Now What" guidebook.  I just cannot believe that this is 2017 and not ONE of the orgs out there have done a guide book for us....especially given that there can be decades between diagnosis and death.  

And worse, we are not routinely offered aggressive Rehabilitative Services like those who stroke are. 

Nor, are we routinely offered accommodations at work or school help us keep participating in our lives.  Nor, are these accommodations protected under the law. 

No, there still a lot be done...we still in the dark ages as far as dementia care this country.  Scotland actually leading the way.  Have you heard of Dementia Alliance International??  Or DAI for short.  They an organization comprised of PWD for PWD and are helping secure our rights on a global scale.  They offer weekly online support groups. 

That said, chronic pain just poorly treated as a whole, not just for those with dementia.  Those who have chronic pain either shop around until they find a doctor who will rx opiates, or find some other way deal with it.  I feel seriously sorry for people who get caught in the "pain management" clinics and are forced on anti-depressants.  And the seriously sad fact is that doctors are given HUGE kick backs by Pharma rx those drugs.  I had a doctor tell me once that I should take Abilify for my pain....and I googled him as he talked and found out he had gotten $250,000 from the makers of Abilify.  F him.

Anyways, hang in there. 

<3


 
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