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 Should We Change Neurologists? Advice Please 
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Joined: Sun Oct 10, 2010 1:08 am
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Post Should We Change Neurologists? Advice Please
My husband was diagnosed with LBD in October 2010. He is a retired physician and recognized his own Parkinsonism. We went to see a neurologist in SF who spent about 45 minutes with him, did some movement, smell and cognitive testing and told him he thought he had Lewy. He has vivid dreams at night and sometimes flails, but that is the only LBD symptom...no delusions, or hallucinations ever. He sees the neurologist every 3 months for about 15 minutes.

The past 6 months, he has noticeably deteriorated physically. He has every single Parkinson's symptom. His tremors are worsening, his shuffling accentuated, etc. he has trouble buttoning his shirts and getting dressed---very slow. It takes him 30 min to dress. Yet, his mind is sharp. He does have trouble with me notation sometimes and reports that it's harder to concentrate. I've noticed he's not reading all of the newspapers we get every day, where he would spend half the morning reading them before. Some days, he says he feels "shaky" and weak. He does go to the gym 3x a weak, and actually, he is strong. He also, in the past 3 months, has trouble pushing up out of a chair, and cutting his own food up.

He went to see his internist last month, who had not seen him for 6 months, and she told him she was stunned at how much he has declined physically since she saw him last. She wanted him to see his neurologist, who was on vacation. We couldn't get in to see the doctor for a month. We went to see him yesterday. He walked in and immediately informed us he was on call for two hospitals and while he recognized we had waited so long for this appt., he wouldn't be able to spend much time with us. My husband asked him if he was sure he has LBD and he was quite confident. He has offered my husband Sinemet in previous visits, but he has been reluctant to start taking anything, other tthan his once daily Clonazepam, which helps with mild anxiety.

I'm hoping someone can help me make sense of this. We were so disappointed and felt brushed off by the neurologist. He handed my husband an RX with no explanation as to how it would help him, what symptoms it would alleviate, what site effects to look for, etc. because he was in such a big rush. Secondly, We've done a fair amount of reading, and I'm just not convinced he has LBD. Finally, between the busy internist who rarely sees him, and the neurologist, I'm feeling as if we are falling thru the cracks. No one has told us about any services available nearby, suggested PT or safety information, etc. It would be wonderful to be handed a list of local resources.

I would love any comments/thoughts and suggestions. Should we get another opinion? He has not started the Sinemet, but I'll make that another post.

Thank you all!


Sat Jul 21, 2012 9:18 pm
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Post Re: Should We Change Neurologists? Advice Please
I wouldn't give up on this Doctor just yet unless you really aren't happy with him, I would send him an e-mail explain again that your husband is a former fellow Physician and you understand that the day you came was perhaps not the best but you still want a follow up without interuptions if at all possible and I am thinking from his reply you will have your answer if he has interest in your husband and if he shows none then by all means move on because who wants a doctor who doesn't care !

Good Luck !

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Irene Selak


Sat Jul 21, 2012 10:39 pm
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Post Re: Should We Change Neurologists? Advice Please
patty

sounds like you have so many questions, as we all do thru out, but especially in the beginning and it doesnt sound like they are being answered..

i think i would give the guy another chance, as irene suggested.. but at the same time, id get a second opinion or third!!... it sounds as tho your primary is pretty sharp, could she give you a recommendation.. or does your hubby have colleagues that could offer a suggestion to a different doc...

im not familiar with parkinsons as it stands alone, except for what i have read on here, but maybe a parkinson specialist might be considered also

wishing you luck and please stay in touch...
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun Jul 22, 2012 9:38 am
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Post Re: Should We Change Neurologists? Advice Please
Patty. I wouldn't give up just yet, on the other hand if he does have Lewys you will be seeing him alot and you and your husband need to be comfortable and happy with the Dr. My husband began with the PD symptoms when he was 63 (15 years ago), very minor, stiffness, and didn't swing arm, small handwriting (but it had always been small), no facial expression, and was started on Sinemet. As the years passed the symptoms increased, his only tremor was his little finger, more shuffling, difficulty getting out of chairs, going up and down stairs, and difficulty and lack of enjoyment in reading, drooling, runny nose, visual/spatial orientation....we attributed it to Parkinsons. Medication was now Stalevo and Sinemet 4 times a day. We attributed it to PD. Then 3 years ago, suddenly came the hallucinations, then the dilusions, then more loss of executive function-and the diagnosis of Parkinsons Dementia of Lewy Body Variant. We thought since it had been such a long time, we had missed the threat of Parkinsons Dementia, but it grabs you. The Lewy symptoms (which probably we had been attributing to Parkinsons for several years) is going much quicker than his PD did. He is now 78, and in addition to the PD medications he takes Seroquel in the evening to help with REM sleep. The Exelon or Namenda never helped him, but we may have zoomed through the earlier cognitive decline before we tried it, and he is now beyond "early" stage. As you can tell by reading all of our comments, it is so different for every patient, you have to be the advocate and learn about this, but we are all in this together and we all learn so much from each other. The bottom line is that this "trip" we are all on, as I said you will be spending time and relying on the Dr. so you have to trust that he/she is exploring all options and as aware of Lewy as much as medically possible. Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Sun Jul 22, 2012 1:17 pm
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Post Re: Should We Change Neurologists? Advice Please
I would look for another neurologist, preferably one who works with Parkinsons or a dementia specialist. I had a similar experience in that when we went for my mom's follow up appointment after seeing the neuro psychologist, the neurologist said bascially "yep, she has Lewy Body Dementia", and that was it . No information at all, just sent us back to her pcp. Needless to say, we won't be going back to that neurologist. So far, my mom has a very compassionate, well informed, dedicated pcp and that is working out for us. If at some point in the future, I think she needs to be seen by a specialist, we are going to go to Oregon Health Sciences ( our med school in Oregon), and see a dementia specialist in their neurology department.
Good luck, Ellen

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Ellen 59, caregiver for mom Marion 82, dx LBD Feb 2011


Mon Jul 23, 2012 11:24 am
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Post Re: Should We Change Neurologists? Advice Please
My mother was diagnosed by the neurologists in a large teaching hospital--and I didn't get the feeling that any of them were terribly knowledgeable about dementias--and her diagnosis was confirmed by a neurologist in private practice who works a lot with dementias including (LBD)--wouldn't call him a specialist but certainly he was very knowledgeable.

Anyway, in both cases, the physicians just reported their conclusions to me with little explanation. I had to quiz and probe about what LBD was, how it would progress, what I should expect, what could be done for my mother (meds), etc., etc. And then I did a ton of reading on my own so I could understand it as best I could.

I think this is probably pretty common, and as CGs we need to be ready, willing and able to ask plenty of questions and advocate for our LOs. Maybe it's just the way modern medicine works, but I don't see a lot of handholding and education coming from physicians these days. Sorry to sound cynical.

Julianne


Mon Jul 23, 2012 12:27 pm
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Post Re: Should We Change Neurologists? Advice Please
Julianne,
In part I agree and I think much has to do with insurance, I often feel that way with my newer Doctor as my own Doctor just up and quit one day and I was moved over to another in the group and honestly I often refer to my self as the HMO patient, they just get a certain amount for the visit and that's the amount of care you get out of them, I have a lung and heart disease and I have been there on a visit where he hasn't even listened to my chest !

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Irene Selak


Mon Jul 23, 2012 1:58 pm
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Post Re: Should We Change Neurologists? Advice Please
Irene,

No doubt that's true, so all the more reason why we need to be prepared to advocate, for ourselves and our LOs.

Julianne


Mon Jul 23, 2012 4:08 pm
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Post Re: Should We Change Neurologists? Advice Please
Julieanne,
Agreed ! I think it will get worse over time. I believe advocating is perhaps the most important thing a caregiver can do for their loved one, we certainly can't stop the disease, perhaps delay it but we can be good advocates !

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Irene Selak


Mon Jul 23, 2012 4:24 pm
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Post Re: Should We Change Neurologists? Advice Please
Well, I fell so lucky to have you all. I value every bit of advice. Thank you for your thoughts and wisdom.


Mon Jul 23, 2012 9:24 pm
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Post Re: Should We Change Neurologists? Advice Please
Patty, I guess I am going to stick out in the crowd here, but my advice is going to be different.

The fact that you even asked the question tells me that you have that quiet inner voice telling you that this neuro is not the best option for you as caregiver and your husband as patient. I hope you will listen to that inner voice and go ASAP and get another opinion from another neurologist. Do not stop looking until you have that inner peace that tells you that you have BOTH found the right specialist to address your questions and concerns and to take the time to explain what he/she is recommending.

Especially in the case of physicians as patients, you need a bright and assertive neurologist who will take the time to treat you right and that your husband will trust and respect. This will provide for him the care he needs to improve his symptoms as soon as possible. Early intervention can be very beneficial and important.

Also, my husband does not experience hallucinations much at all, but he still clearly has LBD. A few things you mentioned also sound like cognitive issues are beginning to show in your husband.

Here is an excerpt from my book, "Treasures in the Darkness: Extending the Early Stage of LBD..." that gives tips on how to deal with doctors:


Working with Medical Professionals

• If you have any reservations about diagnosis, treatment philosophy, or communication with any doctor, always seek a second opinion.
• Do not stop looking for the right doctor until you find a match for you as well as your loved one. You need care, too.
• Make sure it is easy to contact and get a response from doctors in a timely manner. I use e-mail with one and phone with the other.
• Choose your battles. Contact the doctor for important issues only, and try to solve the lesser issues yourself until your next appointment.
• On the other hand, call before a problem becomes a crisis.
• Make a written list of questions or issues you need to discuss for your appointment times.
• Make a copy of your question list for you and for the doctor.
• Use your copy to take notes as the doctor responds to your questions so you will remember it all later.
• Date your notes and file them in a folder that you can easily find later.
• Take someone with you to doctor appointments to help you remember what to ask and what is said and to take notes.
• Always have the LBDA.org card with you to alert ER folks of the LBD diagnosis and medicines that can do great harm.
• Take a copy of the Beware List with you to medical appointments as you and the doctor weigh benefits versus side effects.
• Contact your local palliative care providers, who have the goal of improving quality of life by relieving symptoms of disease. They may help you coordinate your medical team approach to LBD and give you emotional support and guidance.
• Give a list to each health care provider of all the other providers caring for your loved one.
• Take a copy of the “What is LBD?” page from the LBDA Web site (www.lbda.org) to any new doctor.
• Prepare a bag for medical emergencies. Include medicine chart, change of clothes, wipes, Depends, something to read, and snacks.
• Once again, avoid the emergency room if you can.

I hope you get better care very soon, Patty.

Take care,
Pat

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Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sat Aug 11, 2012 10:38 pm
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Post Re: Should We Change Neurologists? Advice Please
Pat,
I don't think anyone was saying not to look for another Neurologist, I think I might have said I wouldn't jump into another dr just yet. Getting another doctor takes time and starting over again with another can be hard. I think Patty was disappointed that the doctor is just handing out scripts without hearing about side effects and so on, well my doctor never hands me a script and says Oh by the by there could be a side effect, not to be flipant about it but how many doctors would do that, then the other issue was the doctor seems reluctant to give a script for anything other that what he is already taking, well has anyone asked why not? Then the 3rd issue was no one is directing them to services well again I don't think most doctors do unless they are asked , they certainly aren't going to do this on there own .

Pat I think it is great that you are recommending sending along a copy of a page from your book but again this is not a fix all for each LBD 'er. I think we just have to give doctors a chance to work with the person before we make that leap, Just my .02 worth !

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Irene Selak


Sun Aug 12, 2012 9:49 pm
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Post Re: Should We Change Neurologists? Advice Please
Hi, Irene.

Of course, every LBD situation is unique. My point is for Patty to listen to that inner voice and respond to it, especially since her hubby is a doc himself. He will need a special neurologist with the skill to get him to really listen to him and trust him so that he will be more likely to be compliant with a good plan.

I believe many of us as caregivers ignore that inner voice for too long and settle for less than we should from the medical folks.

Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun Aug 12, 2012 11:25 pm
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