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hopeful30 IS LORENE
hopeful30
Posted: Tuesday, January 31, 2012 1:50 PM
Joined: 12/31/2011
Posts: 64


Hi everyone, when the sweet girl at the lebrary helped me onto this new (and very confusing) new site, i was very unsure about user and screen names which is why i come up hopeful30. many of you will remember hopeful was the name that appeared at the bottom of the old place, JAB is the only one who picked up on that, great detective work JAB!!!! I am alive, did not move and the only reason i havent been on here much is mostly the weather. i do have upcoming surgery on my shoulder, the MRI showed a tear in the rotator cuff and a great deal of damage, which explained my pain and inability to use my right arm hopefully they will be able to correct a bunch of stuff!! i also got the results of my neuro testing it was no surprise that there was "significant decline" in most of the things they tested, memory the biggy and thinking, word finding, thought process and a bunch of other stuff. i was sad, but expected as much. the doctor said at least im still at home and only require some help right now, but it will change, i already need more support with money billpaying shopping and all the other stuff i have to do. but im still smiling (even if the smiley face is a lost cause on here!!!) i miss you all write me ok???
Myriam
Posted: Tuesday, January 31, 2012 4:27 PM
Joined: 12/6/2011
Posts: 3326


Hi, Lorene. It's a pleasure to meet you. I'm kind of a newbee and look forward to hearing more about you.  
Mimi S.
Posted: Tuesday, January 31, 2012 7:07 PM
Joined: 11/29/2011
Posts: 7027


Welcome back Lorene,

We've missed you.

Do keep fighting!  I'm finding that exercise, as much and as vigorous as you can, is very, very important.

Do stay in touch!


Lisa428
Posted: Tuesday, January 31, 2012 10:58 PM
Joined: 12/5/2011
Posts: 795


Hey Lorene,

 

It's really great to hear from you.  Sorry to hear about your decline.  Keep smiling!!

 

I've had rotator cuff surgery in the past.  Good Luck.  I had it on my right rotator cuff orthroscopically first.  Then in PT they re-tore it so I had to have it re-done with the cut.

 

Please, make sure you have a recliner to sleep in as I was unable to sleep in bed for several weeks.

 

Perhaps I was just unlucky.  Yours should go much better.  I will keep you in my thoughts and prayers.

 

Please, make sure you have someone to help you in the beginning.

 

 

Peace and hope,

 

Lisa


hopeful30
Posted: Wednesday, February 1, 2012 2:38 PM
Joined: 12/31/2011
Posts: 64


Mimi, HELLO friend!!! you are one of the peple who keeps me fighting so thank you for your wise words and advice. i do try to walk as much as i can but my legs are very bad. they are thinking nerve being pressed on in my spine, after the rotator cuff surgery they will do an MRI and hopefully fix some of the problem. i love to walk and the weather here in upstate N.Y. is crazy great!!! as far as my great decline, i am taking it as best as i can, i try to stay positive and do what i can to keep whats left of my brain active. its not over til this scrawny girl sings!!!LOL good to hear from you, ive missed talking to you! (pretend smiley face!)
hopeful30
Posted: Wednesday, February 1, 2012 2:42 PM
Joined: 12/31/2011
Posts: 64


Lisa, thats what they are going to do to me, the other ortho doctor wanted me to start rehab for my arm, but ill wait to see the surgeon to think what he thinks first, the idea of them moving my poor arm all around is not very appealing!! the recovery is what has me worried, ill have to go to a rehab since i live alone but just for 3 or 4 weeks i hope, i dread the aftermath and hope it goes ok. was your recovery very long???
hopeful30
Posted: Wednesday, February 1, 2012 2:44 PM
Joined: 12/31/2011
Posts: 64


myriam, welcome!!! newbee! hope to hear from you alot, i joined a year and a half ago but am new to the new site and boy is it a challenge!! ill get used to it in time, everything changes after all!!!
Geegee
Posted: Thursday, February 2, 2012 9:57 PM
Joined: 11/29/2011
Posts: 514


Hi Lorene! Welcome back...again SGF!   When is your surgery scheduled?  I hate hearing that news.


Is the rehab that you are going to familiar with caring for individuals with dementia?  Please make sure they are aware of your memory issues and AD.


Please keep us up to date my little friend!


Myriam
Posted: Friday, February 3, 2012 12:14 AM
Joined: 12/6/2011
Posts: 3326


hopeful30 wrote:
myriam, welcome!!! newbee! hope to hear from you alot, i joined a year and a half ago but am new to the new site and boy is it a challenge!! ill get used to it in time, everything changes after all!!!
smiley-face-animated-smileys-hello-13 

SteveSanJose
Posted: Friday, February 3, 2012 12:05 PM
Joined: 1/3/2012
Posts: 189


Welcometo our message board Myriam – feel free to write anything that's on your mind, there is no judging here. 

 


patient mom
Posted: Friday, February 3, 2012 4:41 PM
Joined: 1/30/2012
Posts: 2


Hello, I'm new to this site.  Am trying to learn whatever is out there for early on-set dementia.  I'm full time caregiver for my daughter who was diagnosed last Spring.  The fly in the ointment is that she is mentally challenged.  I fine NO info for folks like her but do find a lot for Down's Syndrome.  Feel like I'm swimming upstream alone.  Any ideas?

 


SteveSanJose
Posted: Friday, February 3, 2012 10:17 PM
Joined: 1/3/2012
Posts: 189


Welcome  Patient mom. I too have EOAD. For caregiver help,and information,try the caregiver board. There is some links early-onset dementia, which may lead to early-onset Alzheimer's, or EOAD. Dementia is not allway AD. Hope I can help.

Difference dementia at EOAD -

http://www.vivaprime.com/health/mental-health/dementia.aspx#

What is early onset dementia -

http://www.ncbi.nlm.nih.gov/pubmed/19604328 

Early onset Alzheimers -

http://www.alz.org/national/documents/brochure_earlyonset.pdf 

Early onset dementia cased by Alzheimers -

http://www.alz.org/alzheimers_disease_what_is_alzheimers.asp 

Also please call the Alzheimers Assn free help line 800-272-3900. Its also your link to your local chapter.

Operator


Michelle 50
Posted: Saturday, February 4, 2012 8:12 AM
Joined: 12/28/2011
Posts: 43


Lorene,Sorry 

Sorry to hear about your surgery and your decline. Sounds like your a pretty strong soul and you've got all of us pulling for you!  I'm new here, was just diagnosed in Dec. This board has been very helpful to me sine then. The funny thing is that I have been having trouble with my right shoulder for a few months now. I first noticed it when I went to get my coffee cup out of the cabinet I would get a pain and my I would have to catch my arm not to drop the cup.I am now finding that the strength in that arm has weakened. The pain is sporadic and does not last for more than  seconds. Was your anything like that, how long has it bothered you? I'm thinking I should let my Dr know as I haven't mentioned it only because it's not that bad. But maybe I can do something like PT to help it. 

Polar Bear 


Mimi S.
Posted: Saturday, February 4, 2012 8:42 AM
Joined: 11/29/2011
Posts: 7027


Michelle,

Yes it's time to consult your doctor. A scan is a good thing. Sometimes PT is just what's needed. Or, it might be something called a 'frozen " shoulder and that calls for rest.


JAB
Posted: Saturday, February 4, 2012 4:33 PM
Joined: 11/30/2011
Posts: 740


Michelle, definitely talk with your doctor right away.  Do you have a good neuro?  My first-blush reaction is parkinsonism.  Sometimes the very first sign of Parkinson's is shoulder pain.  Parkinsonism could be caused by a med -- what are you taking?  Or it could be caused by a dementia that involves "Lewy body pathology", such as Parkinson's, Lewy body dementia, and Alzheimer's with Lewy body pathology.  The first two may respond well to a Parkinson's med.

 

Or ... your symptom could be something totally unrelated.  It could be a herniated disk.  Heck, maybe you're just sleeping on it wrong, and you've pinched a nerve.

 

Sounds as if it's been persistent enough that it should be looked into.


JAB
Posted: Saturday, February 4, 2012 4:38 PM
Joined: 11/30/2011
Posts: 740


patient mom wrote:

Hello, I'm new to this site.  Am trying to learn whatever is out there for early on-set dementia.  I'm full time caregiver for my daughter who was diagnosed last Spring.  The fly in the ointment is that she is mentally challenged.  I fine NO info for folks like her but do find a lot for Down's Syndrome.  Feel like I'm swimming upstream alone.  Any ideas?

 

 

Hi, patient mom, welcome to the boards.

 

All of our members are free to read and post on any of the forums.  This is a great place to learn what it feels like to have early-onset dementia, since this forum is primarily for our members who have dementia themselves.

 

I'd suggest that you also start a new topic on the Caregiver Forum, if you haven't already done so.  We have a number of members whose children have Down syndrome and dementia.  (I know you just said your child doesn't, but they may be able to help you develop ways to help her cope.)  We may very well have other members whose relatives have the same type of mental challenges your daughter has.  So ... if you could also, when you start the thread, explain a little more about what her problems are, and whether the docs gave you any idea as to what is causing the dementia, we might be able to find more folks who can answer your questions.



hopeful30
Posted: Monday, February 6, 2012 1:34 PM
Joined: 12/31/2011
Posts: 64


Michelle, i have had problems with my neck for a long time due to a deformity at birth (i was born without disks in my neck) this has resulted in numerous problems including a bone spur pressing on a nerve that made my arm painful and alot of numbness, this led my new ortho doc to MRI my right shoulder and there he found alot of damage including two tears probably getting worse for some time as everyone was involved with just my neck! i really dont know when it got worse, but the symptons were increased pain and numbness and difficulty using my arm and it got very weak. im hoping surgery will help, but was told recovery would take time, i hope i have the patience to deal with my main arm being out of commission for 6 to 8 weeks possible even longer. i would certainly see the doctor soon, if i had been MRI'd earlier i would be looking at maybe just rehab, but those are the breaks!!! i have also alot of arthritis and tendonitis and other things i cant pronounce!! WELCOME!!!
hopeful30
Posted: Monday, February 6, 2012 1:37 PM
Joined: 12/31/2011
Posts: 64


HI AGF!!! i will know my surgery date Feb 15th after i see the surgeon, i hope the rehab place i wll go has experience with dementia im sure they do but will certainly ask and thanks for making me think of that!!! you always look after me!! just trying to stay positive and not get too anxious, its the biggest surgery since my back in 1991! how are you girl?? hope well, i think of you often!
Geegee
Posted: Tuesday, February 7, 2012 12:13 PM
Joined: 11/29/2011
Posts: 514


Hi SGF!  OMG!  NO disks?  I thought I had a bad neck. LOL!  Now I feel 


miraculously healed in comparison, my dear.


I had my neck surgery in '98 & my back in 2005.  I have had 3 frozen shoulders 


so I can relate on some level.  Because of not having discs,  you have lived 


with pain your entire life and not had a real frame of reference for the term 


"pain free. " It's understandable  that you have always lived with shoulder pain 


caused from your the nerves in your neck being compromised.  I think It would 


be hard to know if you had rotator cuff damage because you must have 


thought it was just increased pain.  Well...you will do fine with surgery.


My concern is how we are going to be able to communicate?  The rehab may 


have a computer.  Add that to your list to check on.    


 Your friend from the library may be willing to write the instructions to the 


website and to log in.  Then when you are ready at rehab to use your left hand, 


someone can help you log in to tell us how you are!!!         




hopeful30
Posted: Thursday, February 9, 2012 1:48 PM
Joined: 12/31/2011
Posts: 64


Geegee, HI AGF!!! Yup, no disks!! i was diagnosed when i was 12 with Klippel Feil Syndrome. look it up if you want to know my story, its pretty interesting (although very painful) i had to go to the emergency room once in my thirties while at work. i had such a bad headache they thought i had a brain tumor. when the CT results came back i had ALL the doctors in my "cubby" fascinated by my neck. some had never heard of the deformity!!! my doctor said i had the neckbones of a sixty year old woman!! way to make a girls day HUH!!! its just gotten worse since then, severe arthritis is very painful specially when its cold or rainy i use alot of heat, it helps a little! they havent said whether my shoulder is a result of the neck, ill ask when i go next week. and if i cant post after surgery, the girl at the library has my info and can let you know how i am ok??? talk to you soon!!
Geegee
Posted: Thursday, February 9, 2012 3:41 PM
Joined: 11/29/2011
Posts: 514


Thanks for that info.  I WILL look up that horrible dx.  Thats great news that the library lady will let us know!!!!!!!!  


YEAH!! Cheer smiley"!


Iris L.
Posted: Thursday, February 9, 2012 7:05 PM
Joined: 12/15/2011
Posts: 17900


Lorene, although I am a pediatrician I never heard of Klippel Feil Syndrome.  I'm glad you were diagnosed at an early enough age that you knew where your pain was coming from.  I hope and pray that the surgery you are about to undergo will relieve your pain and discomfort.   

 

Do you know how long the surgery will take?  How long will you be in Rehab?  Using the computer can be part of your Rehab.  I hope they include that so you can connect with us quickly. 

 

Iris L. 


hopeful30
Posted: Monday, February 13, 2012 1:57 PM
Joined: 12/31/2011
Posts: 64


i will know wednesday when i talk to the surgeon. hes really great and has worlked it New York hospitals, he specializes in this kind of surgery (shoulder and knee) i hope they have some kind of internet connection in rehab,i do not know how long or anything yet. i just hope the surgery goes well and my healing and recovery is fairly speedy!!