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55 with Early Onset.
Joe christensen1960
Posted: Sunday, March 5, 2017 12:08 PM
Joined: 9/26/2016
Posts: 19

Thanks for the post,  but been there done that, a lot of people have suggestions, I'll repeat like I've made in my other posts, tried everything over the past 4 years. Denied surgery, as it took isnt 100% successful, per 7 doctors, so they refuse do do it, too close to my brain stem, and no exercise can touch or do anything hint with the bones around that.  I'm only looking for info on doctors that deal with pain in Alzheimer's.  I'm sure you loved one, maybe now not in pain, but you cannot guarantee that if they are in pain, it will be addressed.  So far, I've had suggestions that have all be tried over and over again.  If you do not ask your doctors now, as to how do deal with pain for the unforseeable future, I hope that person doesn't get ignored and I'll die in pain.  That is what I am dealing with.  I see too many people at the nursing home with Alzheimer's, get untreated for pain.  Not until thefamily yell and screams at the doctor, to treat their loved, do the doctors ever respond.  Do you know if your doctor will treat you for pain, once you cannot communicate?  That is what I am addressing, and nothing more.  Hanks



Joe christensen1960
Posted: Sunday, March 5, 2017 12:11 PM
Joined: 9/26/2016
Posts: 19

Thanks, I couldn't have said it better.  Right on.  Thank you
Posted: Sunday, March 5, 2017 2:20 PM
Joined: 7/24/2015
Posts: 3020

That a good point, we should all be asking our doctors how they going deal with our pain in future. 

Soon after I was dx'd and came on here (and found the issues with our care), I wrote an extremely detailed Care Plan that I gave my doctors and providers.  It both educates on what certain symptoms are...like, agitation, pacing, and wanting go home are not actual symptoms of Alz, but rather secondary symptoms arising from when our brain no longer can tell what the body is sensing.  Our hard-wired response, however, that tells us get away from negative stimuli is still very much there.  So it lists things go through for my carers...like checking if I am hot, or cold, or need pee, or hungry - and if none the above, you can guarantee that I in pain - and for give me Vicodin. 

I even wrote about aggression and combativeness and said this not a primary or secondary symptom either, but rather a tertiary issue arising from how people are approaching me.  That if it a worker, they fired....or, if it someone who have be there...then they had better watch Teepa Snow an read Dr. Alan Power and come at me differently.  But under no circumstance am I willing take an anti-psych offset bad caregiving issues.  I even wrote it up that if anyone do unwittingly drug me, that they can be sued.  So my daughter can sue them for. 

It very good be proactive about it.  I wish you luck in finding a doctor that will help you. 


Iris L.
Posted: Sunday, March 5, 2017 3:52 PM
Joined: 12/15/2011
Posts: 18502

Joe, I am so sorry that you continue to be in unrelenting pain.  I admit, I did not remember all that you had been through in the past.  I was in terrible pain since 1987.  The pain was worse at night.  I got relief from an NSAID once, but the doctor refused to renew the prescription!  My point was, I kept searching for pain relief, and I finally found it.  I hope that you will be successful in your search for pain relief.  Don't give up!

Iris L.

Joe christensen1960
Posted: Wednesday, March 8, 2017 5:37 AM
Joined: 9/26/2016
Posts: 19

Thanks, It is good to know that I am he only one.  I wish it was mandatory that Alzheimer's doctors and caregivers read all of these inputs from Alzheimer's patents.  Your input was greatly welcomed.  Thank you.  I can say things are n words, but not speech.    Joe
James Thompson
Posted: Friday, March 10, 2017 6:13 AM
Joined: 1/7/2014
Posts: 2


Apparently each Alzheimer's Association location is different.  I live in south/central Ohio and the Miami Valley Chapter of the Alzheimer's Association is great.  They have the following regular activities every month:

1. Education and Support Group Meetings. The first half of the meeting is dedicated to providing updates on what's going on with Alzheimer's Care.  The second half of the meeting is when the people diagnosed with Alzheimer's share their ief living with Alzheimer's and we help each other figure out how to be as active an involved as we can be.

2. Movie Monday.  Once a month we go to a retirement center that has a 100 seat movie theatre and we attend Movie Monday.  We watch a movie and then they serve us a nice lunch.  The event is free.

3. Field Trips: Between 1-2 times a year they take us on a field trip.  Last year they took us to Wright Patterson Air Force Museum,  They also took us on a bus tour of a beautiful flower park.  

4. They have Seminars where Doctors, Drug Developers, Alzheimer's Care Specialists speak.

5. Eric VanVylman the Director of the Miami Valley Chapter of the Alzheimer's  does a great job at fund raising as well.  He has a couple events a year where there are speakers and these draw a number of people so they raise money this way.  

6.  The Alzsheimer's Walk in our area is huge.  This raises a lot of money for the Association and allows them to fund the various things they do for those of us in the Miami Valley who live with Alzheimers.

Something to consider,  ask your local chapter to contact Eric VanVlyman at the Miami Valley Chapter of The Alzheimer's Association.

Mimi S.
Posted: Friday, March 10, 2017 8:00 AM
Joined: 11/29/2011
Posts: 7027

Thanks James,

There are many chapters throughout the country that offer similar services.  Unfortunately, they are usually in larger population centers.  Yes, we need more to serve our needs before we are ready for Adult Day Care.

Possibly local chapters can do more outreach looking for us.  They all must have a data base of those who have been involved. Do they list caregivers or PWD?  Then search the list for PWD that live close.  I just remember how important it was for me to meet such.

Posted: Monday, March 13, 2017 11:20 AM
Joined: 3/7/2017
Posts: 49

I think as a whole pain is under treated as a whole. 

New rules around rxing it tie doctors hands. 

It is easier for doctors to say this Med.... Works for pain off label, than to say I have nothing to offer.

I bang my head against the wall, my mom no longer registrars pain as pain. If asked she will say it doesn't hurt, right after breaking her shoulder for weeks she would say she had no pain so they didn't treat her fir pain. I had to go to her doctor and say that I thought she was in pain. That her crying, get anxious etc were all symptoms if pain. They did treat it then. It boggles me you know anybody else would be screaming in pain, so she looses the ability to reconize it they don't treat it.


Posted: Monday, March 20, 2017 3:23 PM
Joined: 10/11/2014
Posts: 167

Hi Joe,

Nice to see you back here but sorry to hear about your pain. I have had neck pain for some time due to cervical kyphosis, cervical stenosis and 4 bulging disks in my neck. The neurologist and several MRIs a couple years apart said it will never get better. This was due to decades of poor posture and ergonomics. I know what it is like to have a lot of neck pain, constant 24 x 7 headaches for 9 months straight and lots of shots in head and neck didn't help. This problem I have isn't coupled to the Younger Onset Alzheimer's which has stopped progressing for me so that I only have a DX of MCI now which I spoke of in a Feb 22, 2017 post.

What has helped my neck pain is spinal pumps, meditation, magnesium gel and heating pads you stick in the microwave. Spinal pumps start in the morning on an inversion table where I go upside down for ten seconds, go back to normal for ten seconds and repeat the process for ten minutes. What this does is relax the muscles and gets the synovial fluid to start going in and out around the cervical joints. One of my naturopaths at Groton Wellness had recommended this. After I stretch my neck and hear the crunching I do a Tibetan rites exercise by turning around 21 times and spotting each time I go around to get my neck muscles and joints turning.

The meditation was taught to me by Dr. Joshua Wooten at the Arnold Pain management center in Brookline, MA. Using a type of transcendental meditation with biofeedback I learned to meditate and relax my neck muscles so that I can stretch my neck muscles later and keep my disks off my nerves. While relaxing it hurts enough that I may tear up a bit but afterwards I get on my knees, bend over and stretch my neck out. I do my meditation before shooting a pool match so that I can bend low over a pool table now.

The magnesium gel is filled with magnesium salts and will relax the muscles. This was also recommended by Irina Serebryakova at Groton Wellness. It relaxes the muscles. https://www.amazon.com/gp/product/B001RJ7MRM/refx_sc_act_title_1?ie=UTF8&psc=1&smid=A2PMP3DB63SCFJ

The gel and neck wraps are to relax the muscles so they can stretch out again and take disks off the pinched nerves. If mine get pinched I get pins and needles in my face and/or hands.

I should point out that a lot of my neck issues was first pointed out by my osteopath therapist friend who helped me diagnose my problems and showed my some exercises to do and straighten out my ergonomic failings.

You should watch your sitting, standing and walking posture as well so you don't have your head leaning forward and pulling on your neck and shoulders.

Good luck.

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