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Newbie and frustrated
vitale
Posted: Monday, September 3, 2012 11:03 AM
Joined: 9/3/2012
Posts: 5


 

Diagnosed with Mild Incognitive Impairment with a visual memory score in the lower 10 percentile.  Still going thru more tests for why I lose my balance, shuffle when I walk, walk slow.

 

I talk slow, sometimes stutter like speech, can't find words, get flusterred and cry, and then lose it all.  I call people wrong names, I get distracted easily, I call it, the OOOh there's a bird,and off I  go.

 

If I give it all I Got I can concentrate a couple hours, then sleep for rest of the day, maybe the next day too

 

They say this is the easy phase.  It doesn't feel so easy, especially when I  break into tears, with the slightest pressure.

 

I am trying to find coping skills, to make it less frustrating.

 

Some days I wanna lock myself inside and quit going to dr's appts, because I ways to get better  (or at least not get worse) not just new diagnosis titles, which do me no good.

 

I also have coronary artery disease, peripheral vascual disease, anayuerism in my head, mild copd, and throw in an anxiety disorder and ptsd, growths on thryoid that need bioposy, and a  healed  dissection b, and few other sprinkled in..

 

At 53 years old, if I get thru a day without confusion or tears, I call that a good day.


Iris L.
Posted: Monday, September 3, 2012 11:41 AM
Joined: 12/15/2011
Posts: 18509


Welcome to our online support group, vitale.  My, you do have a lot on your plate.  I'm sorry to hear you are having so many health issues.  It's good you have already begun your medical investigations.  It is challenging and can be discouraging at times.

Are you being evaluated by a neurologist who is a dementia specialist?  They know the most about how to evaluate the various causes of memory loss, of which you have several, including vascular disease, copd, and thyroid problems.  You might have more.  Sometimes, getting good treatment for these other issues can improve your cognition.

While you are still undergoing evaluation, you can begin Best Practices.  These are lifestyle habits that improve cognition and increase health.  You will have to discuss the habits with your doctors.  Best Practices include:

--eating the Mediterranean diet, with many anti-oxidants and omega 3 fats

--vigorous exercise--in your case, exercise according to what your doctors have told you is beneficial

--brain stimulation through activities and learning

--socialization--don't isolate.

Are you still working?  If you are not working, you may be eligible for a disability pension, depending upon your ultimate diagnosis.

The Alzheimer's Association runs a 24 hour Helpline at 1-800-272-3900 staffed by volunteers and Care Consultants who are specialists in dementia care.  You can call and ask specific questions and also ask for your local chapter so you can join a local support group.  They can also help you locate resources in your area.

Our members are here to support you as you travel on this journey.  Please post any time you have a question or a concern.  We are here to help.  You are not alone.

Iris L.

 

 


Mimi S.
Posted: Monday, September 3, 2012 12:50 PM
Joined: 11/29/2011
Posts: 7027


Hi Vitale, Welcome to our world. As always, iris has given you good advice. What you are describing seems more than MCI, but with everything you have on your plate, I've no medical background to know if some of your symptoms go with something else you have.

My heart is with you and I hope we will become your place to go to.

Good luck as you continue your testing.


Iris L.
Posted: Monday, September 3, 2012 1:18 PM
Joined: 12/15/2011
Posts: 18509


Vitale, I forgot to introduce myself.  I too have a diagnosis of cognitive impairment nos, not otherwise specified. 

The neurologist believes this is due to complications from systemic lupus.  I have a history of Alzheimer's disease in my extended family, all now gone. 

I'm 62 now, but my memory loss began at age 37.  I've been on Exelon patch and Namenda for three years with good results.
 

I've learned a lot and been encouraged by socializing with the members on this board.  This board is the only place to get the type of awareness that we need about our condition.  I hope you get as much benefit from the boards as I do.

Iris L.
 


vitale
Posted: Monday, September 3, 2012 6:18 PM
Joined: 9/3/2012
Posts: 5


They are testing blood for thryoid and metals ?

and then i have to have a emg or ekm or ?  It's the one that sends shocks from your ankles to spine and back again.  I had it years ago and thought it was more like a torture than a test.  Suppose to check for nerve damage in legs

 

Have appt with Neurologist the day after, Sept 14th, i believe, to see about starting the alzheimers meds.

 

Those tests are for balance and walking slow, shuffling I call it.

 

I applied for disability and it came back denied, that I could do physical labor lifting 25 to 50 lbs all day..  Yeah Right.. not even on a good day can I lift 50 lbs once.  I guess a doctor has to specify that.on,

 

The nice man at the dept of aging and disability resource center is submitting my appeal on the 19th.  My first reaction to the denial, was to tell social security to forget it.   I want to focus on getting better, or at least not getting worse.  Seems like the stress of all the doctor appt's and paperwork wears me out.

 

In the end, I am not even sure that MCI is covered under disability.  I know it should be, cuz it turns your life upside down, and it's hard enuff to get thru the day without working. 

 

 

 

 


mram6958
Posted: Monday, September 3, 2012 6:57 PM
Joined: 6/20/2012
Posts: 4


My hubby wants to take me on a trip to Las Vegas to renew our vows (20th anniv). I am 55 yrs old with early onset alzheimer''s, and I am on SSDI and disability retirement from work now. We want to go by Amtrak train, but ticket agent says I am not really disabled enough to need a traveking companion to get the disability discounts for us. I feel he is wrong, i wander off, forget to bathe and eat and get lost a lot. I sometimes need help with dressing myself, but not too bad on that yet. Is this ticket agent breaking the ADA laws? I think so! What''s your opinion?…
Iris L.
Posted: Monday, September 3, 2012 7:33 PM
Joined: 12/15/2011
Posts: 18509


Welcome, mram.  I suggest you call the 24 hour Helpline number at 1-800-272-3900 and discuss the Amtrak situation with a Care Consultant.

Iris L.

 


dayn2nite
Posted: Monday, September 3, 2012 7:35 PM
Joined: 12/18/2011
Posts: 3097


Vitale, please aggressively pursue the thyroid issue--even though the "growths" on your thyroid may just be benign goiter(s), they CAN affect the thyroid function, which in turn affects your cognition.

 

Mram6958, Amtrak's web site says if you need any personal care whatsoever (and you indicate you do), Amtrak personnel cannot provide it and you need a companion, who gets a 15% fare discount.  The ticket agent was wrong. 

 

When you are booking the ticket, make sure your husband does it so he can thoroughly explain the reasons you need a companion.  If they still refuse to book with a discount for him, ask to speak to a supervisor.


Iris L.
Posted: Monday, September 3, 2012 8:33 PM
Joined: 12/15/2011
Posts: 18509


Vitale, are you thinking of the nerve conduction velocity tests? 

Has the neurologist suggested what might be the cause of your mobility problems?  It's good to have all the testing completed before making a diagnosis.

If your diagnosis were Early Onset Alzheimer's Disease you would be eligible for Compassionate Allowance, which fast-tracks your disability application for SSDI. 

There are attorneys that help clients with SSDI appeals.  That might be something for you to consider after you have all your testing completed.

Iris L.


vitale
Posted: Monday, September 3, 2012 9:02 PM
Joined: 9/3/2012
Posts: 5


as far as memory...  it's mild congitive impairment

 

i have loss of volume of the cortex,  .  (he explained that meant my brain had shrunk) alot more than they would of expected at my age

 

and mra showed luekorasis ?  he explained was white spots on the brain

 

seems as though it's a shuffle from one doctor to the next, one nuerologist for memory and now the next neurologist is figuring out why i am off balance alot.  It feels like the ground is moving a bit when i stand still.  If I close my eyes, I immediatelye start losing my balance, and i can't put one foot in front of the other, like an old fashion drunk test.

 

Did you all ever feel like, going to all these doctor's appointments is not productive ?  It's like I get a new "thing" but without the cure to go with them.  I guess it keeps the hospitals and doctors offices in business, but sometimes it doesn't feel like it's doing so much for me.  If anything, it adds alot of extra stress.

 

Maybe I am just going thru an exhausted period.   Do you feel like your talking funny, when you talk ?  I can feel myself talking slow and stuttering some, and rambling.  Just can't seem to turn it off to stop embarrassing myself.  I guess I am at that stage where I am noticing how strangers talk to me differently than they used to.  They talk slower, they write things down for me.  Even though it's appreciated at the same time, it's an adjustment for me

 

 


Zen
Posted: Monday, September 3, 2012 9:20 PM
Joined: 7/14/2012
Posts: 55


vitale wrote:

 

Diagnosed with Mild Incognitive Impairment with a visual memory score in the lower 10 percentile.  Still going thru more tests for why I lose my balance, shuffle when I walk, walk slow.

............................................

I also have coronary artery disease, peripheral vascual disease, anayuerism in my head, mild copd, and throw in an anxiety disorder and ptsd, growths on thryoid that need bioposy, and a  healed  dissection b, and few other sprinkled in..

 

Well that all makes absolutely no sense - you have an ANEURYSM and they think you can lift 50 lbs???? 
  
 Do NOT give up on your disability application!  They're trying to wait you out - the whole point of the mountains of red tape is a delaying action while they wait for you to give up or die! 
   
 Also, at our age, there are different rules for disability - if you have a whole lot of different health problems, the whole lot must be considered - even if you don't qualify based on any one diagnosis. 
   
 Did you know that a diagnosis of Alzheimers automatically qualifies you for a "compassionate" decision?  From the way you describe your level of functioning it certainly sounds like you would qualify.   
   
 Talk to your doctor - sometimes doctors give the least sever diagnosis because they think it won't upset the patient as much.  But if you meet the criteria for Alzheimers (it would be early onset in your case) then you get automatic approval for disability. 
   
 The doctor may also be waiting to find out what the growths on your thyroid are, as those may affect your functioning if your thyroid is impaired.  Talk to him about whether or not an Alzheimers diagnosis is warranted yet though, or rather have your designated helper do it.   
   
 If you don't have someone going to doctor's appointments with you already, you need to try to find someone.  If your memory and ability to communicate are impaired you will need the help.  
  
 If the doctor says he doesn't feel a diagnosis of Alzheimers is in your immediate future, start looking into finding a lawyer to handle the social security appeal process for you - get someone to help you identify a good one.  Just like any legal proceedings, there are a lot of sharks out there, but there are some good ones too.  A local senior center may be able to help with recommendations, or maybe the hotline here can make some recommendations in your area. 
  
 I resisted having a disability lawyer and consequently I'm on my 3rd appeal - the first one to go before a judge.  It takes forever, but I resisted having the lawyer because when I was still working in mental health in another state, it was common for the disability lawyers to take a case and then drag it out for 3 years or more to maximize there profits, since they got 1/3rd of your back pay.  So they made more money the longer they made YOU wait. 
  
 But the government finally passed laws to put an end to that.  There's a limit on how much the disability lawyers can get from you now, in my state it's $5,000 no matter how long the case drags out - and they only get that out of your back pay IF you win your case, so there's no cost to you up front. 
  
 It sucks that we have to have lawyers to get the benefits we are qualified for, but at least once you find one, that's one less burden on you.  I do have a lawyer now so I don't worry any more about deadlines or whether or not I remembered to do something for them or whether or not I put the wrong date down somewhere.  The lawyer handles all that now. 
  
 A good disability lawyer can help you with getting the proper statements worded in the proper way from the doctor as well.  With all that you have going on, there are plenty of things that should strengthen your case.   
 
 With COPD, heart condition, vascular disease, AND an aneurysm, the idea that you should be lifting 50 lbs, or even 10, doesn't sound very supportable.  But the doctor has to say that in the right way and a lawyer can help you get that statement, even if you have to get it from another doctor who is used to dealing with SS.   
   

w


Zen
Posted: Monday, September 3, 2012 9:31 PM
Joined: 7/14/2012
Posts: 55


Ok I tried to make that shorter and it's STILL ridiculously long.

 

I've cut it into two posts, here's the second part

 

I'm the exact same age as you - 53 - and the things you are describing are things I'm going through as well. The slow walk and balance issues, and I fumble a lot when I try to do things that require fine motor control.  I used to be a silversmith - no way could I handle small parts like that now, or do all the finicky work with tiny bits of solder and all that.

 

I also have memory problems and I sound like I'm drunk when I talk - because I slur and can't find words.  I still sound ok if you didn't know me from before when I write, so I stopped answering my phone or calling people and really only communicate over the Internet these days.   

It's easier and less embarrassing, at least until I can't write properly any more either.  I already have to rely on the spellchecker and a thesaurus and I've never in my entire life had to do either one.  Also, when I write, the pauses to figure out the next word aren't visible, and nobody knows how often I have to edit when I used the wrong word.   

Lately they're not a little wrong either, they're REAL wrong.  I had to correct several a little while ago but I've already totally forgotten what they were!

The distraction is awful as well.  And I do the same thing you do, if I exert myself to the max, I pay for it for the next couple of days with total exhaustion.

 

For whatever little comfort there is to be found in it, you're not alone.  I'll stop now as I think I've run on quite a bit - that's part of this too, I can't be concise, even going back to edit and try to make it shorter.  If I do that, it ends up longer, so I don't do that anymore, I just stop. Stopping now!
Zen
Posted: Monday, September 3, 2012 9:42 PM
Joined: 7/14/2012
Posts: 55


With the visible brain damage you say your doctor is seeing in your scans, it would seem that there is definitely proof that you have one of the types of dementia that would qualify you for compassionate (immediate) disability.  You really need to get someone to help you discuss that with your doctor.

 

SS says:  These conditions involve cancers, neurological, and immune system disorders

 

 From http://www.socialsecurity.gov/compassionateallowances/

 

Visible brain shrinkage is definitely a neurological system disorder.

 

Here's the list of things that qualify for a compassionate decision:

 

https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022080

 

Print that off and take it to your doctor.  You don't have to figure out what it says, just ask him if you're being tested with any of those diagnoses in mind.  If you are, it will strengthen your case a LOT.

 

The information about compassionate and quick decisions is here:

 

https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022000!opendocument

 

I provide this so you can pass it on to anyone who's trying to help you.  If you go and try to read any of that stuff it'll make your brain fall out of your head.  I swear it's some of the most confusing stuff I've ever had the misfortune to have to read.  They use multiple abbreviations in almost every sentence.  I didn't understand one word in three.  I might have understood one word in three BEFORE the Alzheimers ate my brain, but not now!

 

I really think you ought to get a lawyer to help you soon.  From what you've described, it sure sounds like you are a textbook case of someone who qualifies for a quick decision, or compassionate - I'm still not sure what the difference is after subjecting my eyeballs to that stuff.



mram6958
Posted: Monday, September 3, 2012 9:57 PM
Joined: 6/20/2012
Posts: 4


Thanks, I'll do that in the morning. I appreciate the phone number and advice.
mram6958
Posted: Monday, September 3, 2012 10:12 PM
Joined: 6/20/2012
Posts: 4


The Amtrak ticket agent said his decision was based on the fact of my age and that he's never heard of someone my age having AD. I tried to explain that my disability may not have phyiscal signs like a wheelchair, missing a foot, etc…. but I AM fighting the acceptance fight that seems to be coming from everywhere. Most people just think I went crazy, or I'm 'faking it'. How does one fake a MRI, an EEG, blood, throid and diabetes , and other nuerological tests? The doctors ran every test on me to be sure it wasn't vitamin deficiency, diabetes, etc. I've improved slightly with Namenda and the Exelon patch, but how does that make me less disabled or affected?I try to raise awareness to others, but they mostly scoff at the idea. I'm going to talk to their supervisor in the morning. Still, I'm not gonna give up!
mram6958
Posted: Monday, September 3, 2012 10:15 PM
Joined: 6/20/2012
Posts: 4


I got fast tracked for SSDI. My decision came in 1 1/2 months after I applied. The case worker at my local Social Security office said it was the fastest decision he's EVER seen! It actually took my work LONGER to make their decision if I was eligible for a medical retirement, 6 months!
vitale
Posted: Monday, September 3, 2012 10:49 PM
Joined: 9/3/2012
Posts: 5


I guess I thought I had been thru the anger, and the denial, and the acceptance and was working on the coping skills and getting myself ready.

 

There was a stage I totally didn't see coming.

 

I call it the Reality Stage.

 

Part of me, thought I was working at getting better.  

 

I went to an alzheimers slide show meeting.   I had mentioned I was working on coping skills to eliminate some of the frustrations in my day to to day life.  Like getting into habit of hooking keys on purse, so I don't look for them. 

 

Using shampoo, and putting on floor of tub, so I remember I washed my hair.

 

She said, that only works til it doesn't.  That at a future point, I will forget my coping skills.

 

Took about a week to realize... I am kidding myself... I am not gonna get better.  They clearly told me brain damage doesn't come back.

 

Reality check...  Best I can hope for is not getting worse... or hopefully slow it down.

 

Very depressing reality check

 

 


dayn2nite
Posted: Monday, September 3, 2012 10:56 PM
Joined: 12/18/2011
Posts: 3097


mram6958 wrote:
The Amtrak ticket agent said his decision was based on the fact of my age and that he's never heard of someone my age having AD. I tried to explain that my disability may not have phyiscal signs like a wheelchair, missing a foot, etc…. but I AM fighting the acceptance fight that seems to be coming from everywhere. Most people just think I went crazy, or I'm 'faking it'. How does one fake a MRI, an EEG, blood, throid and diabetes , and other nuerological tests? The doctors ran every test on me to be sure it wasn't vitamin deficiency, diabetes, etc. I've improved slightly with Namenda and the Exelon patch, but how does that make me less disabled or affected?I try to raise awareness to others, but they mostly scoff at the idea. I'm going to talk to their supervisor in the morning. Still, I'm not gonna give up!

 

For the future, might be a good idea to get a letter from your doctor stating you are disabled and need assistance with activities of daily living.  Then you can inform when necessary that you have documentation.

 

I mean how stupid is Amtrak, the discount they're giving is only 15% in the first place to be going through all this.

 

If the supervisor also turns out to be less than helpful, ask for that person's supervisor and/or send an email through their web site regarding their unwillingness to follow their own rules.


Myriam
Posted: Monday, September 3, 2012 11:09 PM
Joined: 12/6/2011
Posts: 3326


mram6958 wrote:
The Amtrak ticket agent said his decision was based on the fact of my age and that he's never heard of someone my age having AD. 
 
 
Have you gotten a safe return bracelet, yet? I got one right after I was diagnosed. On the back of the bracelet it says "Memory Impaired" along with my first name and an 800 phone number. 

 
I haven't had occasion to use it, yet, but if I'm ever challenged by someone, like a ticket agent, I will show them the bracelet.  The bracelet gives me some comfort, too, knowing that if I'm ever really lost or unable to communicate, someone can call the number on the back of the bracelet to let them know what has happened to me. Medic Alert has all of my information, including the contact information for my family members.  

 
Go here to get one, if you want: 

 

thirdtime
Posted: Tuesday, September 4, 2012 1:36 AM
Joined: 9/4/2012
Posts: 1


In the first part of your post, you sound like myself and like other people that I know who have M.S. (Multiple Sclerosis.)

 

Hello fellow message board members. I found this message board today because I finally had to admit to myself what's going on.

 

I was diagnosed with Multiple Sclerosis 27 years ago. I had a discussion last year with my Neurologist abou the fact that I'm noticing cognitive deficiencies that reminded me of Alzheimers. I said "reminded me of" because I was living with my mother during the time after her retirement from working at age 64 and for me the M.S. effect on me (cognitive) made me decide that it was time to come out of the work force at around the same time. So--after several years of our life of living together, I began to notice her cognitve problems. Again, it reminded me of when her mother was living with our family from when I was 5 years old until I was in my late teens. Back then we-my sister, brother and I-said Grandma was going 'senile' and we viewed it as an inevitable part of aging. But you know how they say hindsight is 20/20? Well, in a hindsight evaluation of the experiences with her, she was a classic case of Altzheimers. They just hadn't invented that word then. She died in 1983.

 

So, after watching my grandmother descend into Alzheimers, then my mother, I believe that I am familiar with the way Altzheimers manifests itself in my family. So I've had to try to be objective in evaluating my symptoms while guarding against being in denial.

 

In that same discussion with my doctor last year, I told him that I didn't know if my cognitive changes were a result of approaching Alzheimers, or a result of having M.S. for so long. But our conclusion at the end of our visit was, it didn't really matter what we call it--it's still dementia.

 

So here I am.

 

 

 


Iris L.
Posted: Tuesday, September 4, 2012 11:00 AM
Joined: 12/15/2011
Posts: 18509


Welcome thirdtime.  I have a diagnosis of cognitive impairment nos which is a neurologic complication of systemic lupus.  This type of complication is a known factor of the auto-immune neurologic diseases, such as multiple sclerosis.  In fact, I sometimes attend an M.S. support group because their cognitive problems are similar to mine.

The determination of whether your cognitve impairments are due to a dementing disease or to multiple sclerosis would be necessary from a neurologist skilled in evaluating people with dementias.  Are you currently seeing such a neurologist? 

I recently purchased a book called "Facing the Cognitive Challenges of Multiple Sclerosis" by Jeffrey N. Gingold.  2011  ISBN: 978-936303-20-5.

From the back cover:  "Jeffrey N. Gilgold is the internationally acclaimed author of the Award-winning book, Facing the Cognitive challenges of Multiple Sclerosis and an outspoken volunteer advocate on MS and cognitive disability.  He has been a guest on The Montel Williams Show, NPR affiliates, numberous webcasts and national talk radio shows.  In his second book, Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis, Jeffrey provides strategies from people who have MS and medical providers, sharing their tactical advice on how to manage the "invisible MS."

Iris L.

Geegee
Posted: Tuesday, September 4, 2012 11:07 AM
Joined: 11/29/2011
Posts: 514


Thirdtime,

Vitale,      &

mram6958,

   Welcome, to our message boards.  My goodness, I turn my head over the weekend and there you are!  We are so happy to have each of you but I'm sorry for the problems you are experiencing.  Please make sure all of you read the above welcomes and advice.  Each member has given you some of the basic info we give all of our treasured Newbies! 

Of special importance is to make a note to place by your telephone that shows the 24/7 Helpline that is available for you and/or your help/care givers. 

 1-800-239-3900 Ask to speak with a Care Consultant for advice, guidance, or questions.  They are well qualified and trained regarding issues we face.

I  was diagnosed 2-1/2  years ago at 63.  Of course, my problems were evident to me years before. 

Vitale, I appreciate what you wrote about your experience with the stage of REALITY.  What we have to prepare for is that our current reality will change to a new reality, and on and on. 

The only plan I have to cope with that at this time, is to try to find the good things in each day.  Some days I have to look harder than others.  I want to find the Sunshine in each day.

Each of you can start a new discussion on the board to introduce yourself or discuss a topic you need support on.  We are here for each other! 

Go  to the top of this page and start and select "Discussion Board" and then one of the 2 Alzheimer's forums listed.  Then, select "start a new discussion" and follow the prompts to title and then post your topic.

Im here as a Peer Volunteer to help you in anyway I can.  Our other valuable members are very knowledgeable and qualified to give varied advice.  We are a team and a family. 

Welcome!

Geegee

Find the Sunshine in your day!

 


Iris L.
Posted: Tuesday, September 4, 2012 11:07 AM
Joined: 12/15/2011
Posts: 18509


Vitale, if you already have brain shrinkage more than normal for your age, to what does your neurologist attribute this to? 

MCI is a diagnosis to be made when there are no positive signs on MRI or other other imaging studies.  Why is your diagnosis not Early or Younger Onset Alzheimer's Disease?  Ask the neurologist directly. 

You have factors that could make your diagnosis a mixed dementia.

You may have to seek a second opinion with a dementia specialist.  A Care Consultant can help you locate one. 

Your medical diagnosis and reports have to be consistent for EOAD in order for you to get Compassionate Allowannce and to be awarded SSDI benefits.

Iris L.

vitale
Posted: Tuesday, September 11, 2012 12:21 PM
Joined: 9/3/2012
Posts: 5


Still going thru all the testing..

Last week was mostly cardiology stuff

this week is mostly more neurology.

 

they are trying to figure out if the reason I can't walk very good is due to the  peripheral vascular disease (plague build up in legs) or cuz of nerve damage, or a brain thing.

 

I did all the blood work, sleeping tests, and stuff last week.

 

If the tests come back as expected, I start alzheimers meds on friday.

 

I am really fighting the urge to just lock the door and stay inside.

 

I went to social security and she said obviously someone made an error and checked the wrong box, it's obvious i can lift any weight.  So I have an appt on 19th with county person that is helping me to file the appeal.

 

I can't wait to have all the tests that social security needs done finished, because i would love to not see another doctor for a few months.  The diagnosis doesn't really matter as much to me, as being able to slow down the frustrations and stress in my life, so i function better

 

 


Myriam
Posted: Tuesday, September 11, 2012 2:07 PM
Joined: 12/6/2011
Posts: 3326


Great job holding up to all the testing, poking and prodding. It will be a relief to know what is going on, then it will be time to focus on being joyful and doing the things you've wanted to do, but couldn't find the time.


As sung on Monty Python's Life of Bryon "Always Look on the Bright Side of Life:


http://www.youtube.com/watch?v=SJUhlRoBL8M


Iris L.
Posted: Tuesday, September 11, 2012 3:32 PM
Joined: 12/15/2011
Posts: 18509


Hang in there, vitale!  I know the feeling of being sick of trying to explain to doctors how you feel, and not getting many answers. 

I'm glad you are getting some help with your SSDI appeal.  If your doctor gives you a diagnosis of EOAD you will fall under the Compassionate Allowance category and get your benefits sooner.

Iris L.

hut4pups
Posted: Wednesday, September 12, 2012 2:25 PM
Joined: 9/10/2012
Posts: 1


I too am tired of going to the doctor's over and over. I hear myself talking slow and disjointed because the correct words won't come out of my mind much less my mouth. I describe things and then someone tells me what it is. I don't like feeling stupid. I just llike talking to people I know becuse they understand. So hang in there. I can't change it, so I am trying to go with the flow. Good luck, we are all in this together.
groundhog2
Posted: Wednesday, November 14, 2012 5:16 PM
Joined: 11/14/2012
Posts: 22


Wow we are the same age! and me I lose everything,slur my speech,stumble will forget what I am talking about and have to ask the person what I said and what we were talking about and really it makes me angry on top of dementia....find out Friday what the spot on my lung is and also had gastric bypass 20 yrs ago and nothing but trouble..just had my esophagus dilated last week think it is closing up again! see my doctor Sunday evening and really hope I don't need surgery.so frustrated just so much to deal with at once and to make matters worse my husband got fired from his 6 yr job for taking too much time off because I had appointments or was sick! Thankfully he had another job in 2 weeks but now have to be careful so he is not late or misses work I can't drive due to confusion..so it is tough.I just try to make him think I'll be fine so he don't worry and keeps his mind on his job,I am truly sorry for what you are going through if I can help in any way by all means let me know.this is the one place we can talk about our issues and not have it called drama! so glad I found this site I was going nuts with no one to really talk to about my feelings to..my Dad passed Aug 31 2012 from complication of dementia he was bedridden for 2 yrs and my mom was his caregiver so hard losing him! I live in TN and they live in FL  so when my mom called and said critical care hospice said he had 3 days to a week we packed and took off well got south of Atlanta and got a text he passed all my family was there but me so never got to say goodbye anyways I cherish my good day which are becoming few. I sure will pray for you.some advice find every source  of help you can get.I am doing this now....I would be happy to help you find resources if you would like.Just remember here people know what we are going through and I think sharing experiences can really be helpful

take care of you! ,,hugs.


groundhog2
Posted: Friday, November 16, 2012 9:50 PM
Joined: 11/14/2012
Posts: 22


vitale,,

you may want to get checked out sounds alot like Parkinson Disease symptoms....my Dad had it with those symptoms hope my advice helps


groundhog2
Posted: Friday, November 16, 2012 9:57 PM
Joined: 11/14/2012
Posts: 22


Third time ,

,

I was diagnosed with MS in 95 and has been in remission with few flare ups.

I wanted to ask my neurologist if MS can cause dementia.also getting checked for Parkinson Disease.Just very confused was Diagnosed By PA that did a one page memory test do I need more tests?who does the testing?


groundhog2
Posted: Friday, November 16, 2012 10:04 PM
Joined: 11/14/2012
Posts: 22


I tried to apply for SSI and my husbands income is too high but with looking into a caregiver due to memory loss and confusion and wandering..and it is very costly..even with his income we really can't afford it don't qualify for medicaid either I feel it is unfair..medical bills adding up even though I have ins. copays add up!! don't know where or how to get help any advice would e appreciated