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"Do the best you can do"
Iris L.
Posted: Saturday, June 30, 2012 7:17 PM
Joined: 12/15/2011
Posts: 16448


This was the advice given my by the psychiatrist I consulted for the first time last week regarding my new antidepressant.  I told him I was very concerned about my cognitive impairments and what advice could he give me?  "Do the best you can do," was his advice.

I was disappointed.  I expected some insight that impaired executive functions would be responsive to the medication I had been prescribed.  I'm already doing the best I can do.

Fortunately, the new antidepressant seems to be helping my cognition.


Iris L.


nomemo
Posted: Saturday, June 30, 2012 10:27 PM
Joined: 3/21/2012
Posts: 439


iris - my doctors usually tell me pretty much the same thing; they say that i'm extremely well, or as well as can be expected, for someone with frontotemporal dementia.  they say, "that's all you can do".  sometimes i say to myself, "yeah, they're right" and other times i say to myself, "that's crap!".
nomemo
Posted: Saturday, June 30, 2012 10:29 PM
Joined: 3/21/2012
Posts: 439


iris - i also meant to add that i'm glad your new meds seem to be helping.
dayn2nite
Posted: Sunday, July 1, 2012 12:23 AM
Joined: 12/18/2011
Posts: 3097


Iris L. wrote:

This was the advice given my by the psychiatrist I consulted for the first time last week regarding my new antidepressant.  I told him I was very concerned about my cognitive impairments and what advice could he give me?  "Do the best you can do," was his advice.

I was disappointed.  I expected some insight that impaired executive functions would be responsive to the medication I had been prescribed.  I'm already doing the best I can do.

Fortunately, the new antidepressant seems to be helping my cognition.
 

 


Iris L.
 

He can't tell you your executive functions will respond to medication because he doesn't know if it will happen. 

 

All he or any other doctor have to offer are the standard medications for dementia and for depression and "do the best you can do". 

 

If you have had in the past or have now any sort of improvement in functioning, you are doing better than half the people who take the medications.  My mother never had a response to anything except a very brief 2-month perking up of her personality on Exelon patch.  It didn't help her functioning at all, however.

 

I wish I could sound more encouraging, but there is a reason you see caregivers talk so often about taking medications off in moderate or severe dementia--because they are extremely expensive and there is no perceived benefit.


Iris L.
Posted: Sunday, July 1, 2012 2:33 AM
Joined: 12/15/2011
Posts: 16448


dayn2nite wrote:
Iris L. wrote:
 

 

He can't tell you your executive functions will respond to medication because he doesn't know if it will happen. 

 

All he or any other doctor have to offer are the standard medications for dementia and for depression and "do the best you can do". 

 

there is a reason you see caregivers talk so often about taking medications off in moderate or severe dementia--because they are extremely expensive and there is no perceived benefit.

 

Dayn2nite, there is a difference in treating early stage patients and mid to late stage patients.  My diagnosis is not yet dementia.  I have been told by a several neurologists that the reason for my cognitive impairment is depression. 

I have done my own research on the internet about cognitive impairment and depression.  How much of my cognitive impairment is due to depression and how much is due to early stage dementia, I don't know.  But the studies I have found do make a distinction. 

I had hope to receive some acknowledgement that the psychiatrist was aware of the psychiatric studies in this area.  I would like to feel comfortable that the doctor I consult is well informed and up-to-date.  I did not have that feeling, based on his simplistic response to me. 

As we have learned, the pathology of dementia begins long before the signs become apparent to outsiders.  Frankly, IMHO, if more patients were treated aggressively in the early stages, there might be fewer going into the mid and late stages, when the use of the medications becomes less effective, until many years later. 

I don't want to be in that category.  I want aggressive treatment NOW, while my brain and synapses can still respond and I have neuroplasticity on my side. 

Doctors don't know if a particular cancer treatment will work, but they do know enough to discuss the treatment options with a patient.  I never heard of a doctor telling a cancer patient to do the best she can.  Why can't dementia patients be the recipients of informed medical care?

Iris L.
 


dayn2nite
Posted: Sunday, July 1, 2012 8:26 AM
Joined: 12/18/2011
Posts: 3097


I had a reply written and of course this software caused it to disappear.

 

In a nutshell, what I had written was that the difference between most cancers and dementia is that there IS hope the patient can be cured.

 

If there's a cancer you can compare with dementia, it's that inoperable brain tumor, the one where when you tell someone about it they immediately say "God, I'm SO sorry" because they know there's nothing that can be done and this is what that person will die from.

 

It's a pessimistic view, but until more effective treatments come along it's the way I feel.


always&4ever
Posted: Sunday, July 1, 2012 11:40 AM
Joined: 6/28/2012
Posts: 151


Iris,

 

I agree that was a rather simplistic answer and seemed as though they could been a bit more understanding and proactive.  If you feel uncomfortable witht he treatment you are getting from this doctor you need to find another and keep searching until you find one who will listen. 

 

My Dad passed a year ago last May of cancer.  If the doctors he went to had listened or truly cared, we might have had more time with him.  My 3 sisters and I were all frustrated with their treatment of him, but he was so layed back and trusting it took months before he decided he should go to Vanderbilt.  By the time we got to Vanderbilt the cancer had spread so much he had only 9 months, maybe a year to live.  I had tried to get Dad to change doctors, but he didn't want to cause waves. 

 

Iris, cause waves.  Seek until you find a doctor who will listen and be proactive and partner with you in your care.  Tell them of your research and the treatments you would like to try.  Don't assume they know everything.  I question the doctors all the time.  They don't usually get mad, if they are a good doctor and want what's best for you.  They will be patient.  If they do get upset with you, they aren't the right doctor for you.  Go online and research the doctors in your area and see if you can find one who is active in dementia research.  That is what I did in finding a neurologist for my husband.  We don't get to see him until October, but I am confident in the treatment we will get as my primary physician told me he is the best and that's why it takes so long to get in to see him.

 

Iris...I am praying for you and believing for you to find a doctor who will listen and have knowledge of the research you share with them.  If you need help in finding someone or doing research, send me a message letting me know what area you need to find a pyschologist in and I will be happy to help you.


Iris L.
Posted: Sunday, July 1, 2012 3:11 PM
Joined: 12/15/2011
Posts: 16448


Thank you, always.  I'm sorry to learn about the loss of your Father.

I won't give up searching for the best care for myself.  Nor will I give up encouraging others to seek the best care for themselves.  I believe there is hope for early stage memory loss patients. 

When I feel discouraged I think of Mimi S.  Have you seen her video?  Mimi is doing better five years after diagnosis!

http://www.youtube.com/watch?v=Q2w9LG3hMlU 

Iris L.


always&4ever
Posted: Sunday, July 1, 2012 3:30 PM
Joined: 6/28/2012
Posts: 151


Iris L. wrote:
Thank you, always.  I'm sorry to learn about the loss of your Father.

I won't give up searching for the best care for myself.  Nor will I give up encouraging others to seek the best care for themselves.  I believe there is hope for early stage memory loss patients. 

When I feel discouraged I think of Mimi S.  Have you seen her video?  Mimi is doing better five years after diagnosis!

http://www.youtube.com/watch?v=Q2w9LG3hMlU 

Iris L.

 

Thank

Thank you Iris.  I will watch the video tomorrow while my DH is gone to his exercise class.  He has been a bit upset over reading about the 10 signs of Alzheimer's the night before last.  He has 6 of the 10.  I don't think it has quite registered with him yet, even though the doctor mentioned MCI and EOAD in our conversation when we went to see her a couple weeks ago with his symptoms of memory loss and dizziness.  I think it is coming to him gradually as we rule out everything else.  All bloodwork was good, X-rays good, Echo good, will know about MRI next week.  Appointment with neurologist is in October.  Couldn't get in sooner, he is very sought after in our area.  Lucky he took us as new patients.

 

It has been a rough time for a while.  Loss of Dad, cousin, uncle, and job all in 4 months.  Plus several other deaths, DH job loss, and other life things over the last 5 years, but God is good and He sees us through it all.

 

I am so blessed now in connecting with you and so many others on this forum.  You are such an encouragement to myself and others.  Keep on fighting the good fight.  We will claim victory.


dayn2nite
Posted: Sunday, July 1, 2012 3:42 PM
Joined: 12/18/2011
Posts: 3097


Iris, if you want anything other than the standard stuff they give, then you are going to have to find it and suggest it to almost any doctor treating dementia.  The most open minds will be found at teaching facilities and even then the minds are not THAT open.  Those physicians will also be most likely to keep up with the tons of studies produced on this or that aspect of dementia, but even then they aren't out there looking for them every day.

 


Iris L.
Posted: Sunday, July 1, 2012 4:11 PM
Joined: 12/15/2011
Posts: 16448


Dayn2nite, you are probably right.  The psychiatrist I saw is with my local medical group.  Tomorrow I have an appt with my neurologist.  I will ask him for a recommendation to a psychiatrist that he prefers.  I will continue to search for the attention and medical support that I need.

The personal problem I have is that I have sought out over twenty five doctors in the past five years.  I'm worn out with talking with new doctors.    It's ironic that just when I am having a breakthrough, I'm reaching the end of my rope.  

Discouragement is so much a part of memory loss and depression, it's hard to stay positive when the doctor is not encouraging. 

Iris L.

Mimi S.
Posted: Sunday, July 1, 2012 4:14 PM
Joined: 11/29/2011
Posts: 7035


always&4ever wrote:
Iris L. wrote:
Thank you, always.  I'm sorry to learn about the loss of your Father.

I won't give up searching for the best care for myself.  Nor will I give up encouraging others to seek the best care for themselves.  I believe there is hope for early stage memory loss patients. 

When I feel discouraged I think of Mimi S.  Have you seen her video?  Mimi is doing better five years after diagnosis!

http://www.youtube.com/watch?v=Q2w9LG3hMlU 

Iris L.

 

Thank

Thank you Iris.  I will watch the video tomorrow while my DH is gone to his exercise class.  FANTASTIC. THIS IS PERHAPS THE MOST IMPORTANT OF THE BEST PRACTICES. IT IS IMPORTANT THAT THE EXERCISE BE VIGOROUS. HIS HEART SHOULD BE PUMPING! 

 

He has been a bit upset over reading about the 10 signs of Alzheimer's the night before last.  He has 6 of the 10. IN SPITE OF HIS REACTION, IT'S GOOD HE'S READING. CAN HE JOIN US ON OUR BOARD?

I don't think it has quite registered with him yet, even though the doctor mentioned MCI and EOAD in our conversation when we went to see her a couple weeks ago with his symptoms of memory loss and dizziness. SOMETIMES IT TAKES AWHILE TO REALLY SINK IN. DID THE DOCTOR SAY EOAD OR EARLY ONSET ALZHEIMER'S DISEASE?


  I think it is coming to him gradually as we rule out everything else.  All bloodwork was good, X-rays good, Echo good, will know about MRI next week.  Appointment with neurologist is in October. MEANWHILE HAVE YOUR LIBRARY GET YOU A COPY OF: THE ALZHEIMER'S ACTION PLAN BY DORAISWAMY AND GWYTHER OF DUKE. IT GIVERS THE GOLD STANDARD OF DIAGNOSIS; VARIOUS TYPES OF DEMENTIA; AND WHAT TO DO IF.

Couldn't get in sooner, he is very sought after in our area.  Lucky he took us as new patients.  DOES HE SPECIALIZE I DEMENTIA. NOT AN UNTYPICAL WAIT.

 

 

It has been a rough time for a while.  Loss of Dad, cousin, uncle, and job all in 4 months.  Plus several other deaths, DH job loss, and other life things over the last 5 years, but God is good and He sees us through it all.

 

I am so blessed now in connecting with you and so many others on this forum.  You are such an encouragement to myself and others.  Keep on fighting the good fight.  We will claim victory.

VICTORY IS PROLONGING ONE'S STAY IN MCI OR EARLY STAGE AFTER DIAGNOSIS FOR LONGER THAN NORMAL, WHATEVER THAT IS.



dayn2nite
Posted: Sunday, July 1, 2012 5:10 PM
Joined: 12/18/2011
Posts: 3097


 

You are getting the most aggressive treatment short of being involved in a clinical study.  If you are taking Aricept, razadyne, Namenda or Exelon in either patch or pill form (or any combination of those), that's all there is.  There is nothing else approved for the treatment of dementia.

 

Your depression will be treated by your antidepressant and I don't think anyone is going to guess as to whether your functioning will improve or what is causing an improvement.  If you do get improvement, you will be maintained on whatever medication you are on and hope for the best.


Iris L.
Posted: Sunday, July 1, 2012 8:17 PM
Joined: 12/15/2011
Posts: 16448


I don't think it's too much to expect to have a doctor who understands and can advise me about my chief complaint, which is memory loss and cognitive impairment.

Iris L.

always&4ever
Posted: Sunday, July 1, 2012 8:58 PM
Joined: 6/28/2012
Posts: 151


 

Thank you Iris. I will watch the video tomorrow while my DH is gone to his exercise class. FANTASTIC. THIS IS PERHAPS THE MOST IMPORTANT OF THE BEST PRACTICES. IT IS IMPORTANT THAT THE EXERCISE BE VIGOROUS. HIS HEART SHOULD BE PUMPING!    He is the teacher.  It is a cardio class.  We both are in training right now for a half marathon.  Our doctor was concerned because his heart rate was so low.  We told her it's because we run (mine is very low too), but she did some tests just to be sure and all was fine.

 

He has been a bit upset over reading about the 10 signs of Alzheimer's the night before last. He has 6 of the 10. IN SPITE OF HIS REACTION, IT'S GOOD HE'S READING. CAN HE JOIN US ON OUR BOARD?   I suggested that already, but he's not ready to get on yet.  He said he wants to wait until the doctor gives him the final diagnosis after all the tests and we see the neurologist.  Our primary is the one who suggested it may be MCI or EOAD.

 

I don't think it has quite registered with him yet, even though the doctor mentioned MCI and EOAD in our conversation when we went to see her a couple weeks ago with his symptoms of memory loss and dizziness. SOMETIMES IT TAKES AWHILE TO REALLY SINK IN. DID THE DOCTOR SAY EOAD OR EARLY ONSET ALZHEIMER'S DISEASE?   Our primary did.  She is really good and has found stuff with us in the past that we didn't even know we had.


 

I think it is coming to him gradually as we rule out everything else. All bloodwork was good, X-rays good, Echo good, will know about MRI next week. Appointment with neurologist is in October. MEANWHILE HAVE YOUR LIBRARY GET YOU A COPY OF: THE ALZHEIMER'S ACTION PLAN BY DORAISWAMY AND GWYTHER OF DUKE. IT GIVERS THE GOLD STANDARD OF DIAGNOSIS; VARIOUS TYPES OF DEMENTIA; AND WHAT TO DO IF.   I will for sure check those books out.  I've been reading a lot of stuff.  I have suspected this for a while and have been reading and watching things for some time.  I had to wait until he was ready.

 

Couldn't get in sooner, he is very sought after in our area. Lucky he took us as new patients. DOES HE SPECIALIZE I DEMENTIA. NOT AN UNTYPICAL WAIT.  He does specialize in dementia and is heavy into research at our local university hospital.

 

 

It has been a rough time for a while. Loss of Dad, cousin, uncle, and job all in 4 months. Plus several other deaths, DH job loss, and other life things over the last 5 years, but God is good and He sees us through it all.

 

I am so blessed now in connecting with you and so many others on this forum. You are such an encouragement to myself and others. Keep on fighting the good fight. We will claim victory.

VICTORY IS PROLONGING ONE'S STAY IN MCI OR EARLY STAGE AFTER DIAGNOSIS FOR LONGER THAN NORMAL, WHATEVER THAT IS.  You are so right.  I am praying victory for you, my dear new friend. 


Iris L.
Posted: Wednesday, August 1, 2012 12:34 AM
Joined: 12/15/2011
Posts: 16448


I had my one month follow visit with this new psychiatrist.  I told him the Abilify keeps me drowsy, I'm not sleeping, and I can't get much done at home.  I'm having trouble remembering to take my medications, to pay my bills, and to grocery shop. 

His response, BECAUSE I CAN GET MYSELF TO HIS OFFICE AND CONVERSE WITH HIM, I DON'T HAVE ANY COGNITIVE PROBLEMS.

I was shocked.  I explained I'm talking about having trouble with higher cognitive functions.  He repeated what he had said before. 

He also said there is no drug that can help with my cognition, despite the fact that the three meds I'm on, Exelon patch, Namenda, and Viibryd, are improving my cognition and function.  Even the CPAP for sleep apnea has had some positive effect on my cognition.

I feel so disappointed in this doctor.  I feel like I was back in 2007 when no one would believe I had any cognitive issues.  Fortunately I found a neurologist who did believe me and do an evaluation.   

I need to find someone who can relate to me.  He doesn't seem to realize that my reason for going to consult with him is solely because of my cognitive impairments. 

I'll discuss with the psychologist later this week and decide what step to take next.

Iris L.

Zen
Posted: Wednesday, August 1, 2012 5:27 AM
Joined: 7/14/2012
Posts: 55


Iris, are you seeing a psychologist, or a psychiatrist?  If it's a psychiatrist, they are not well-trained in psychology and tend to rely on medications.  Psychiatrists are MDs. A psychiatrist is unlikely to be well-trained in the intricacies of atypical or early onset Alzheimers.  From what I have seen, Neuro-psychiatrists seem to rely on tests such as the MMSE that only show Alzheimers in its most advanced stages.  Literature on the MMSE still insists that it is the "gold-standard" for diagnosing even early-onset Alzheimers, yet it is well known (and also noted in peer-reviewed literature) that many people in late stage Alzheimers routinely pass the MMSE - I know my father certainly did.  Though to be honest a lot of psychologists seem to have this same blindspot.

 

It might be best to seek out a Neuro-psychologist rather than a garden variety psychologist (PhD or PsyD) or psychaitrist (MD).

 

Without insurance I have no option as far as doctor-shopping.  I know I have been slipping for some decades by now, and the slippage is accelerating.  I recently realized that my reading speed and comprehension are a fraction of what they used to be. It is no longer only the words that escape me, but I am finding more and more that the meanings are gone as well.  I can no longer hold my own in word games at which I used to excel.

 

I just try to manage as best I can.  It sounded harsh, what your doctor said, but it is sadly true; when there is nothing else to say, sometimes people, even professionals, say the last thing we want to hear, even if it is true.  Or, he may just be a jerk and an idiot. Heaven knows I ran up against plenty of those 25 years ago when I first noticed that something was happening to my ability to think.  I don't suppose doctors have changed all that much in the intervening years, when faced with something they can't get a handle on - which is by and large to blame the patient, one way or another.

 



Iris L.
Posted: Wednesday, August 1, 2012 10:20 AM
Joined: 12/15/2011
Posts: 16448


Zen wrote:

  

 Or, he may just be a jerk and an idiot. Heaven knows I ran up against plenty of those 25 years ago when I first noticed that something was happening to my ability to think.  I don't suppose doctors have changed all that much in the intervening years, when faced with something they can't get a handle on - which is by and large to blame the patient, one way or another.

 


 

Zen, you reminded me of something I used to say on the old board--that most doctors are CLUELESS about early stage demenia and cognitive impairment.  The members here know more about dementia than most of the professionals we will see.

This doctor is a psychiatrist.  He works with depressives, bipolars, anxious people and the like.  I don't think he is a jerk or an idiot, but he is CLUELESS and stuck in his ways.  I can't work with someone like him.

I also consult a psychologist whom I began seeing seven months ago after I fell into a deep depression.  She did help me get to the root of the depression, and does understand that I am concerned about progression of my cognitive impairments.

I was accused by one of my PCPs of "doctor-shopping".  I won't rest until I find doctors who can help me.  It's my right, isn't it?

It just goes to show how difficult it is for people with cognitive disorders to find help.  Why do we have to keep searching for someone to help us?

Fortunately my insurance allows me to go to any doctor without getting a referral from my PCP.  I really would be up the creek if I needed my PCP's approval.  My PCPs generally have not been helpful in this area.

This is why I wanted to be affiliated with the Early Stage support group with the local Alzheimer's Association chapter--so I can find professionals that they work with who already are familiar with early stage people and their issues.  I can search myself for knowledgeable professionals, but I feel it's like reinventing the wheel.

Keep working on getting insurance or finding a program that can help you, Zen. Sometimes programs are searching for participants in their research studies and will treat you for free.

Have you seached clinical trials?

Iris L.

jfkoc
Posted: Wednesday, August 1, 2012 11:06 AM
Joined: 12/4/2011
Posts: 18488


Oh, Iris.  I am always searching. I am alwaya hearing Drs say stuff I know is not true. To just take what they all say has to be foolish especially since they constantly contradict each other.

 

Last week I watched a talk online that may be a big help to my husband (MCI).

www.kumc.edu.parkinson. On the left side is Symposium Videos...check out Dr Pfeiffer.

 

I e-mailed him with a one paragraph history. He was on vacation but replied that he would be happy to see Dick. In addition gave me two other resources that were closer to us.

 

If nothing else it the info is interesting and the topic is one that NO Dr here acknowledges.

 

We are fortunate that we are able to go to where we think there may be help so will do so.

 

Let me know what you think.

 

 


RebeccaJ
Posted: Wednesday, August 1, 2012 11:15 AM
Joined: 4/19/2012
Posts: 83


It must have been difficult to sit there and listen to this dr. I would have been crying at his insensitivity. We have to have faith in what we believe is true for us.

 

I have a list of symptoms that aren't on the tests I took. Luckily, my dr knew what I was going through. It is hard to describe the problems created when processing collides or when too much comes too fast.

 

As a Peer Otreach Volunteer,I was talking to a new client yesterday. She was so relieved that I really understood what she was going through. Only people with dementia understand dementia. I don't wish this on anybody, but I wish my PCP could walk in our shoes for a month.

 

The stress of expecting more of people will get our emotions in trouble, which is not good for cognition. Take it easy on yourself and work on the depression. My heart is with. Hugs


nomemo
Posted: Wednesday, August 1, 2012 11:29 AM
Joined: 3/21/2012
Posts: 439


oh, iris....i know what you mean.  although i have been fortunate in finding a good psychiatrist, when my neurologist told me that he wanted me to see a psychologist or therapist to help me "accept my diagnosis" (i thought i had!) i was very nervous!  who would i find who understood the brain from a physiological view as well as psychological?  and one who understood the different dementias and all they entail?  believe me, i was determined to dig in my heels until i found someone who met the above criteria as well as someone whom i "clicked" with and felt comfortable.  again, i was fortunate because my psychiatrist is chief of a behavioral group and had such a person working there.  the psychologist was very straightforward with me, but compassionate at the same time, knew about the brain and its workings as well as the different dementias and how my diagnosis would effect me.  unfortunately for me, after about 9 months he left this practice to go to another city and work at the va hospital, treating veterans with brain injury....those just returning from iraq or afghanistan as well as those in the hospital for different reasons. 

 

 i became nervous again....who would i find?  i wasn't going to "settle".   but, i found my present therapist; she was an r.n. who worked for many years on a brain injury floor at a prestigous hospital in new york, knows about the brain and its working, and is very familiar with dementias.  she is a licensed, certified therapist and i really, reallyy llike her.  doesn't hurt that she's my neurologist's wife, either!   LOL!

 

as far as my psychiatrist, he's actually a geriatric psychiatrist with a specialty in alzheimer's disease and dementias. again, i lucked out.

 

keep going, iris, until you find someone who is 1) qualified; 2) tells you the truth with compassion; and 3) your COMFORTABLE with!  

 

in the meantime, I believe you!!!  


Zen
Posted: Wednesday, August 1, 2012 11:41 AM
Joined: 7/14/2012
Posts: 55


http://www.kumc.edu/parkinson/symposium-videos.html

 

 You mean these videos?

 

They're about Parkinson's, aren't they?

 


Zen
Posted: Wednesday, August 1, 2012 11:58 AM
Joined: 7/14/2012
Posts: 55


Iris L. wrote:
This doctor is a psychiatrist.  He works with depressives, bipolars, anxious people and the like.  I don't think he is a jerk or an idiot, but he is CLUELESS and stuck in his ways.  I can't work with someone like him. 
 
Which is why I say he is an idiot and a jerk.  It is unethical to refuse to educate yourself about the disease or mental health process for which you are treating a patient.  Literally, it is unethical.  It is part of medical ethics not to practice beyond the bounds of your expertise. 
 
 

I was accused by one of my PCPs of "doctor-shopping".  I won't rest until I find doctors who can help me.  It's my right, isn't it?
 
   
Absolutely.  We're constantly reminded to carefully select plumbers, electricians, etc etc etc - looking for references, education, proper training, the ability to handle whatever special construction problems we are having.  Why should it be any different when we are looking for someone to work on the structure of our bodies? Plumbers=urologist/OB/GYN, electricians=NeuroPsych or NeuroCog, etc etc etc
  
 
 

Keep working on getting insurance or finding a program that can help you, Zen. Sometimes programs are searching for participants in their research studies and will treat you for free.

Have you seached clinical trials?

Iris L.
 

I have.  In the first place I have no diagnosis, so am not allowed to participate on that count.  In the second place, I've never seen a study that would accept anyone under the age of 55.  I'm 53.  By the time I'm 55, hopefully Obama care will finally kick in.  Unless idiots who think they'll be healthy forever screw that up for those of us who aren't.

 

I'm actually being penalized for hanging on and coping for as long as I have.  If I had just given up back when I was still employable, I'd have had long-term disability insurance and medical insurance and all the rest, which I can't get now that I've degraded to the point where I'm barely functioning any more. 

 

 Of course I'd undoubtedly have ended up with a wrong diagnosis and totally inappropriate treatment.  Or maybe not - I spent a couple of years trying to make a doctor somewhere take my symptoms seriously and nobody did, and that was when I had good insurance and a PCP who believed me. 

 

 I actually DID pursue this vigorously and failed to get help back then.


jfkoc
Posted: Wednesday, August 1, 2012 2:59 PM
Joined: 12/4/2011
Posts: 18488


Zen,,,yes the  tropic is Parkinsons.  Interestingly MCI/ dementia and depression happen to be three of the non-motor dysfunctions of that illness. 

 

My husband has all three but no one ever hinted at looking at Parkinsons as even a contributing factor until tremur preseneds, AND some people have Parkinsons and never have motor symptoms.

 

I just wanted to share the medical proess. I did not mean to suggest posters have or should check for Parkinsons.


Zen
Posted: Wednesday, August 1, 2012 3:13 PM
Joined: 7/14/2012
Posts: 55


No worries.  I just wasn't sure I was in the right place with that.

 

I actually did not know you could have Parkinson's without the tremors. It can only be a good thing to let people know that.  30% of people who have Parkinson's never develop tremors - that's a lot of folks who are probably being misdiagnosed.

 

I still can't figure out why other people can get clickable links in their posts but I can't.  HTML doesn't work, BB code doesn't work, and they're obviously not inserted automatically.