|
|
Joined: 1/14/2015
Posts: 40463
|
Originally posted by: So Sad
DH is being treated for memory loss, 58 yrs. old, I have been taking him to a Neurologist for a little over a year after our regular physician let me know he could do nothing else for us. The medications he is currently taking are Namenda, Abilify, and Wellbutrin. The Namenda has helped some with the memory, and the other two have helped with the accusing, rudeness, tantrums ect... The question I have for those of you that are futher down this road then me, lately DH has very little energy, trembles, even when he takes a bite of food his mouth trembles, not just his hands, he walks very slowly, can't dress himself and if he tries, he gets so frustrated he just wants to go back to bed, does not swing his arms when he walks and has very poor balance. I brought this up to his doctor, thinking that maybe he has Parkinsons and dementia, hoping that maybe a Parkinsons med might help him to be more capable of doing things, but the doctor told me this is just part of the AD. I am frustrated seeing him go down so quickly, first it was the memory, then the anger and tantrums and acting like a 2 yr, old and now he is almost not capable of caring for himself, all in a fairly short time. My Grandfather passed away a few months ago, so my daughter and grandson came to stay at my house so I could go to the funeral, I rushed to travel 12 hours, went to the funeral and rushed right back in fear that he might have a meltdown while I was gone. I don't know how some of you do this for 10 plus years, how do you keep you sanity. Sorry venting again. Back to the Parkinsons question, wondering if anyone has any experience with this, is it really just a part of the AD? Thanks in advance,
|
|
|
|
Originally posted by: ElizabethNC
So Sad, please get your husband to another doctor immediately. The symptoms you describe are listed as severe side effects which require prompt medical treatment.
You might want to print out this link to take with you:
http://www.drugs.com/sfx/abilify-side-effects.html
Additionally, I don't understand why the neuro would prescribe both Abilify and Wellbutrin, as each of them poses a significant risk of seizures.
I hope these symptoms can be resolved and that your husband will regain his physical abilities.
Do keep us posted!
|
|
|
|
Originally posted by: Mimi S.
Hi So Sad,
I would have hoped that the neurologist would have taken the time to give you a reasoned answer.
And yes, he may be correct.
A person, of course, could have both.
What is the test for diagnosis for Parkinson's?
Was it administered? And if not, why not?
|
|
|
|
Originally posted by: So Sad
Elizabeth, I have to say most of these symptoms were noticable to me before these medications, and I have asked the neurologist about the dangers of Abilify to dementia patients. The Neurologist prescribed a low dose of Wellbutrin for depression, and the Abilify was because he was having terrible paranoia, accusing me of all kinds of crazy stuff and threatening to kill me, he would go into rages. You mentioned taking him to another doctor, I am curious will they have to start over with all the tests (MRI, CAT, EEG and so forth) or are they able to get the results from this doctor transferred? I am concerned, because my insurance sent me a letter turning down the PET scan this Neuro ordered so I am afraid they aren't going to cover much more. We live in a small town and it is a 2 hour drive each way to the Neurologist now, I had talked to our regular MD about flying DH to a Metro dr and after he talked to our Neurologist he said he did not recommend it, he felt I would be wasting my money and time. I do have to say our regular MD's father has AD, so he does have personal experience and he seems genuinely ineterested in DH. I will be sure to keep posting any new info I get. Thanks
|
|
|
|
Originally posted by: ElizabethNC
I'm sorry if I misunderstood. I'm sort of a stickler about checking drug side effects and interactions, and it did seem that Abilify fit the symptoms you were describing.
If as you say, the symptoms started prior to starting on Abilify, then it probably is not the cause, so getting another doctor's read on this would not be necessary.
I am glad to know that with the meds he's currently on, your husband is no longer aggressive and threatening. And I'm glad to know that you have confidence in this neuro as well as your PCP--that's most important.
Like you, I wish that your husband's symptoms were not "just part of the AD," and rather were something that could be treated.
|
|
|
|
Originally posted by: So Sad
Mimi, By what I have read, Parkinsons is hard to diagnose like Alzheimers, no bloodwork type test, just a decision the physician has to make. The Neurologist, felt that the trembling, poor balance, soft speech, ect... that I brought to his attention are just an affect of the AD. I looked online to see if there are any bad side effects for Levodopa if an AD patient takes it, and I couldn't really find any, so I was kind of hoping the Neuro would just try it to see if it would help. I guess I am just grasping for straws. It is aggravating though, because the Doctors don't watch them try to function, they just see them sitting there on the exam table. I wish the Neuro could go to dinner with us or see DH try to get dressed in the morning.
|
|
|
|
Originally posted by: JAB
Elizabeth is quite correct, Abilify and Wellbutrin do not mix. For a doctor to prescribe both tends to indicate the doctor is not particularly well-qualified to be managing dementia patients. Neurologists specialize, and if they focus on something like migraines, they're not going to be very knowledgeable about dementia.
Even though you noticed some of the symptoms before going on the meds, they could definitely be making his symptoms worse.
Another possibility is that he has Lewy body dementia rather than AD. Lewy body is closely related to Parkinson's, and patients with LBD often display Parkinson's symptoms. They are also often misdiagnosed as having AD. (They are also often very sensitive to antipsychotics, so if this is the case, again, Abilify may be exacerbating his problems.)
Any doctor who recommends against a second opinion is not a doctor worth seeing, in my book. Early onset dementias are extremely difficult to diagnose and many of them can be difficult to manage. You want an expert team involved.
You would want to talk to the clinic(s) before you choose which to consult, but I would think that they could use many of the tests (e.g., the MRI and CT scans) that have already been done if you release the films to them. There are some good places in Texas:
http://www.alzcompend.info/?p=14
especially University of Texas, Southwestern Medical Center, if you're anywhere near them -- they have expertise in early-onset.
In any event, most insurance will not cover PET scans for diagnosing dementia. The technique is controversial and the results of questionable value. The only time they may cover it is if it is specifically used to help distinguish between AD and FTD. Or ... if the doctor is experienced enough to know they won't cover the PET scan for diagnosing dementia, and uses a different justification, e.g., diagnosing ataxia. (That's what my husband's now-ex neuro did, and she isn't all that knowledgeable about dementias.)
Rkg, it's possible your FIL had Lewy body. Parkinson's meds are usually not effective in AD patients who develop parkinsonism (... like my husband, sigh.)
|
|
|
|
Originally posted by: silvertop
I was the target of DH rages before the memory loss became glaringly apparent. I also see him having hand shaking, especially when eating, but he's still walking pretty well.
|
|
|
|
Originally posted by: jfkoc
My H may have Parkinson's ( 4 neuro's do not concur). One has suggested trying N-Acetyl-Cysteine, 500mg 1X. The brand recommended was Ortho Molecular Products.
When you googled youprobably read that depression and cognitive/memory functions are symptoms. Just makes it all the more confusing.
|
|
|
|
Originally posted by: Rkg
Unfortunately the answer to your question can be so many things. My FIL who had AD was diagnosed with Parkinson's about a year before he passed. The meds did help a lot.
It's finding the right DR to investigate what is going on. I get so sick and tired of Dr's passing everything off as AD (just because our LO's have been diagnosed) rather than looking for what truly may be going on. In my Dh case side effects! So I am all about what Elizabeth is saying. That's why they need to look further! Good Luck!
|
|
|
|
Originally posted by: jfkoc
Good news. Which one are you headed to?
|
|
|
|
Originally posted by: So Sad
I wanted to let everyone know that I contacted one of the Medical centers that JAB suggested and they called me back today with an appointment for DH in July. The Neurologist he is scheduled to see specializes in EOAD so I am hopeful that she will give me some pointers on what to do to help him not deteriorate so fast. I am still going to take him to his scheduled appointment this month with his Neurologist, but I am hoping a second opinion will be a good thing. Thank you all for your suggestions.
|
|
|
|
Originally posted by: So Sad
Thank you everyone for your suggestions, I have an appointment on the 18th for DH with his Neurologist, and I will ask for copies of all of his tests. I am not close to any of the bigger cities in Texas, but I can drive 2 hours to an airport and fly a few hours to some of the sites you found for me JAB. The Neurologist I have been taking him to is in a 250k population, I probably need to go to Dallas or Scott White in Temple to get more results.
|
|
|
|
Originally posted by: rollerblady
So sad - My heart goes out to you, facing these problems at such a young age.
When you get copies of the tests, be sure to get the pictures, not just the written reports. They put them on CD's now, so it's not an unreasonable request. Our neuro had slightly different conclusions than the radiologist and was glad he had the actual pictures to analyze.
My DH has tremors, balance problems, and difficulty with ADL's, as they call them, activities of daily living: dressing, toileting, walking, which our neuro feels are all a part of the progression of AD.
|
|
|
|
Originally posted by: Rose_Ro
quote: Originally posted by jfkoc:
My H may have Parkinson's ( 4 neuro's do not concur). One has suggested trying N-Acetyl-Cysteine, 500mg 1X. The brand recommended was Ortho Molecular Products.
When you googled youprobably read that depression and cognitive/memory functions are symptoms. Just makes it all the more confusing.
NAC is an amazing supplement.
It's also in Cerefolin NAC, which helped my mom. It's a precription vitamin, with NAC, folic acid and B vitamin
|
|
|
|
Originally posted by: Rose_Ro
quote: Originally posted by So Sad:
Elizabeth, I have to say most of these symptoms were noticable to me before these medications, and I have asked the neurologist about the dangers of Abilify to dementia patients. The Neurologist prescribed a low dose of Wellbutrin for depression, and the Abilify was because he was having terrible paranoia, accusing me of all kinds of crazy stuff and threatening to kill me, he would go into rages. You mentioned taking him to another doctor, I am curious will they have to start over with all the tests (MRI, CAT, EEG and so forth) or are they able to get the results from this doctor transferred? I am concerned, because my insurance sent me a letter turning down the PET scan this Neuro ordered so I am afraid they aren't going to cover much more. We live in a small town and it is a 2 hour drive each way to the Neurologist now, I had talked to our regular MD about flying DH to a Metro dr and after he talked to our Neurologist he said he did not recommend it, he felt I would be wasting my money and time. I do have to say our regular MD's father has AD, so he does have personal experience and he seems genuinely ineterested in DH. I will be sure to keep posting any new info I get. Thanks
is this doctor a dementia specialist/
|
|
|
|
Originally posted by: Rose_Ro
quote: Originally posted by So Sad:
Mimi, By what I have read, Parkinsons is hard to diagnose like Alzheimers, no bloodwork type test, just a decision the physician has to make. The Neurologist, felt that the trembling, poor balance, soft speech, ect... that I brought to his attention are just an affect of the AD. I looked online to see if there are any bad side effects for Levodopa if an AD patient takes it, and I couldn't really find any, so I was kind of hoping the Neuro would just try it to see if it would help. I guess I am just grasping for straws. It is aggravating though, because the Doctors don't watch them try to function, they just see them sitting there on the exam table. I wish the Neuro could go to dinner with us or see DH try to get dressed in the morning.
is this a dopamine med?
my mom took this once, because of her symptoms, and a neuro prescribed it
turned out the caue of the worst of her symptoms was a UTI...
BUT - she did not react well to the dopamine...first hour great, then WEIRD reactions...
as a doctor said to us, a little dopamine is good, too much is - too much!
|
|
|
|
Originally posted by: Rose_Ro
what are the side effects of wellbutrin, esp when used with other meds?
|
|
|
|
Originally posted by: jfkoc
Thanks...I am anxious to hear all about it.
|
|
|
|
Originally posted by: So Sad
quote: Originally posted by jfkoc:
Good news. Which one are you headed to?
The UT Southwestern Medical Center, to a Alzheimer's specialist and her other specialty is Parkinson's.
|
|
|
|