Mild Cognitive Impairment and a progressive neurodegenerative disorder. What to do?

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My husband was diagnosed with Multiple System Atrophy and Mild Cognitive Impairment six years ago. MSA effects the autonomic system and progresses from can to walker to wheelchair to bed. Presently, he should be using a walker full-timebut won't and I think in several months he will be in a wheelchair. He is in pain from the MSA and ha begun to have hallucinations. I think his Mild Cognitive Impairment has become worse and it is just a fancy word for dementia. He is on several drugs including Effexor for depression. I need advice about handing his mood swings - the ones where he says very nasty, hurtful things and sometimes grabs things from me that he shouldn't have. When he sees the neurologist (about every two months) I feel disrespectful talking about him as if he isn't there. I also can't get the neuro to reevaluate him for drug interaction and possible dementia. The dr keeps saying that some of this could be from the drugs but won't do move than that. What to do?

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I would suggest a second opinion. Since the doctor acknowledges that drugs could be an issue, I don't understand why he won't try other approaches. I am aware that when you have several issues to treat things get complicated, However, it doesn't sound to me like this doctor is very good at communication or experimentation, and both are important elements of working with people like your husband (and you, the caregiver).

No doctor should be insulted by the fact that a patient wants a second opinion, but you don't have to mention it to him. If you need a referral, ask your husband's primary physician, just stating that you'd like a second opinion because of the complicated nature of the illnesses.

It wouldn't surprise me if the drugs used to treat the MSA are making the MCI worse. Not all MCI leads to dementia, though it often does. Drugs that affect the brain can push a person in that direction. It's possible that there is no other choice but it doesn't hurt to see if another doctor is aware of an alternative option.

My heart goes out to you, as the caregiver, with all that you are going through. Please update us on how you are doing.

Carol
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You absolutely have to have conversations with the doctor without your husband present even if you have to pay for a consult to do it. If the doctor won't talk with you then it's time for a new doctor.

It also sounds like hubby needs updated cognitive testing - it's very possible that the MCI has developed into a dementia (esp hearing about his hallucinations mood swings) - has his memory also deteriorated? MCI isn't a fancy word for dementia - it just means the person diagnosed doesn't have dementia at the time of testing.

How was he originally diagnosed with MCI? Neuropsych testing is generally recommended first for a baseline and then every 1-2 years for changes. Why wouldn't the doctor investigate whether the changes are medication related or resulting from a dementia? Perhaps his neurologist might be the best MD for his MSA but I tend to think when it comes to cognitive changes & dementia, you are best served by a memory disorder clinic team. Good luck!
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Oh dear, I feel for you. My Dad was on Effexor steady for years after a stroke, but gradually started mood/anger then suddenly talk of ending his life. So frightening. I appealed to the doctor, and he added a small dose of Zoloft to the Effexor. Dad became his sweet self within the week. After a surgery an attending Dr. took him off the Zoloft (he said didn't think "any possible" need to be on both). Boy was he wrong. His words still echo. The next night they ended up restraining my dad to his bed. Awful! Back on the Zoloft, his gentle, kind self. And much more alert, engaged, rationale, as if it cleared a cloud. I'm not advocating any Rx, just that things can change over time with an example of how a little adjustment may make a BIG difference. Also, faced originally with an "expert" neuro who brushed it all off, I found a new one with a more caring approach (and more knowledgable about current research). Sure the first neuro was an expert, just not the one we needed. Seems hallucinations (visual or auditory) should be treated seriously as they can indicate Rx change in order as you mention and other conditions including types of dementia. Good for you respecting the discussion and his participation. People often hear/understand way more than they can express. Best wishes.
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My husband got depressed after losing a job and after on an antidepressant for a long time he became irritable and aggressive to the point of pulling off his belt and getting ready to use it on my daughter over nothing. ("Nothing" = playing and being loud, totally within normal limits, at home...)

I said NO, and I paked a couple bags and gathered up the kids and hit the road with them, stayed with friends, called our pastor to help talk Henry into getting back to the doc and did not return home until a medication change was made (from SSRI to TCA) which got him settled down and OK again. At first he asked me how long I was "going to play keep-away" with the kids and I made it absolutely clear that it would be as long as we needed to prevent abuse and keep everyone safe. I honestly do not remember whether it was Effexor or something else, but it certainly did seem to work backwards after an initial improvement. He eventually did some counseling and tapered off all meds and has been pretty much OK. He never did agree that their should be consistent expectations for behavior that did not depend on his mood at any given moment, he said he thought that things needed to be flexible. Our parenting suffered from that and these are not happy memories, as that meant that with him the kids had to constantly test the limits to find out where they were that day. That's what it took to get his attention and make him change what he was doing; he has always tended to go back to what he was doing before, but this never went to the point of physical abuse again.
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My MIL has MSA. It is a very rare disorder. I'm surprised that you don't mention anything about the other medications he is on...like carbidopa levodopa.

MSA does NOT show up on brain scans. Unfortunately the only diagnosis can be made post mortem.

Not every neurologist is qualified to manage patients with MSA. It took us years to find one and he and his team are always adjusting MIL's meds. I suggest you get your husband a second opinion at a teaching hospital that has a Parkinson's or Movement Disorders practice.

There is the MSA Coalition and they have an annual conference. Check out multiplesystematrophy.org

I cannot emphasize enough that physical activity is very important for your husband. Keeping him moving, getting him into a PT program, will SLOW down the progression of the disease.

Your husband may not have cognitive impairment at all because MSA and cognitive impairment do not automatically go together. Again - you need to get a second opinion.

If he is depressed that is understandable. However, antidepressants are only going to numb him and not help him deal with his illness. Denial is not going to make things better. My MIL fights every single day and I am so proud of her for not giving up. MIL hoped she would be a candidate for a clinical trial for brain pacemakers but was determined to be too frail and rejected. But your husband may be able to avail himself of new therapies.

That said, MSA does get worse and one day your husband will become bed bound so you should ask him now what his wishes are - DNR, feeding tube, etc. But one day can be 5+ years away!

I'm very sorry that your husband has this illness. If you want to talk more about this offline please send me a message. I'll share with you what I've learned the first and most important lesson is to not give up.
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I'm glad to know that you don't want to talk to the Dr. in front of your husband as if your husband isn't there. You're mindful and respectful of your husband's feelings.

If the Dr. thinks your husband's behavior may be from the medications have you asked the Dr. why he won't adjust the meds? I think this is a question you could ask in front of your husband if worded right.

Have you tried putting in a call to the Dr. with a question? Or making an appointment specifically to address your husband's behavior? Is there someone you could bring to the Dr. with you so you could step out into the hall with the Dr. to speak to him while someone stays in the room with your husband?

Beware of the Effexor. It has physically uncomfortable withdrawl symptoms.
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"Beware of the Effexor. It has physically uncomfortable withdrawl symptoms."

I was on Effexor for a few months and know all about withdrawing from it. In my case, I resorted to opening the capsules and emptying a few grains from them every day, until I was emptying half the capsule. Eventually it worked and now I'm on Celexa. I know that some doctors don't prescribe Effexor anymore, for that reason, and also the possibility of getting serotonin syndrome (which I had). A bad drug for many people.

MSA sounds like a dreadful illness. Hugs to you.
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With caring for my parents, long distance, I have had good luck with a couple different ways of communicating my concerns with their physicians. One is to send a fax that covers all your concerns that you do not want to discuss in front of your husband. Be sure the cover page states clearly who the appoint is for and the date and time of the app't, and send with a couple days time ahead for doctor to get and review. When I do that and attend the app't, the doctor brings up the concerns on his own, with his own questions and if the patient does not or is not able to say yes, they experience this or that, then you can step in and say, " Oh yes, remember that happened to you on ......date or time...." or something similar to keep the discussion going. Another thing I do, is that caregivers now go to app'ts with my Mom....and once the doctor comes in the room, they call me on their cell and my cell...and put their phone on speaker. That way, I can hear the entire app't and speak up and add things on my own. It helps with my Mom and her Alzheimers, because, then when she doesn't remember, or doesn't want to do something doctor recommended, there were two of us, besides her who can agree as to what was discussed at the app't. Generally, when we do this during an app't, the doctor then gets on the phone with me, off speakers, and asks if I have other items the doctor needs to know about and I can again bring up anything that was on the fax but not covered yet in the app't. This might help another person. I realize that it's not going to help you as you are going to the app'ts yourself with your husband. Living 5 hrs away from my parents and being a retired RN who sometimes has medical type questions that no one else would know to ask....like about side effects that are showing up, or other possible treatment ideas that I would know about, or research that I have read about.....sending the fax seems to work well for me and the doctor. Some doctors now, also have emails and you can ask if there is a way for you write privately to the doctor about your concerns via email. Or check their biz cards to see if an email address is listed on it. I use that method too for one of my Mom's doctors.
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I'm no doctor or nurse but I have found that when my husband is on any drugs that are for helping the mind his hallucinations and cognitive ability is greatly diminished. I have tried (with the doctors permission of course) giving the drugs in half doses at a time.
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Some people show improvement when they switch from the standard American diet to the ketogenic diet (a low-carb, high-fat diet). With the ketogenic diet, the brain feeds on ketones (energy produced from fat), as well as protein that the body converts to carbohydrate. There are some good online information sources on the "keto" diet. This is just one of them:

psychologytoday/blog/evolutionary-psychiatry/201104/your-brain-ketones

Yooutube also has many good sources of information on the ketogenic diet, as well as "keto" recipes.

If your husband is unwilling to change his diet, consider adding coconut oil and natural butter (preferably grass-fed, like Kerry Gold) to his food. You can add coconut oil like you would butter--in oatmeal, on vegetables, etc. You can also get coconut oil in capsule form. It's more expensive but worth the cost if that's the only way he'll take it.
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