PD Dementia

[Burlingtongal]

I was at my Neuro’s office yesterday regarding some cognitive issues. She ordered a b12 test and an mri. She also put me on Exelon. Does anyone have any experience with this drug and dementia in general. It’s scary.

[Blackfeather]

You may want to consider trying lion's mane mushroom. It is mostly used to improve overall brain function. Check out Paul Stamets on YouTube. He is probably the world's leading researcher when it comes to medicinal mushrooms.

[Burlingtongal in reply to Blackfeather]

Blackfeather, thanks. I will check out the you tube. I have not heard of medical mushrooms.

[PDConscience]

Hi Burlington, I have no experience with Exelon but do commend your doctor's testing for B-12. From a recently published study:

"In moderately advanced Parkinson's disease (PD), low serum vitamin B12 levels are common and are associated with neuropathy and cognitive impairment."

"Low B12 at baseline predicted greater worsening of mobility whereas elevated homocysteine predicted greater cognitive decline."

Source: ncbi.nlm.nih.gov/pubmed/295...

*Elevated homocysteine levels are linked to cognitive decline and supplementing with B vitamins (particularly B6, B12, and folate), together with minimizing your red meat/dairy intake, is the best way to optimize your homocysteine levels. [I use regular B12, along with a B complex supp]

[Burlingtongal in reply to PDConscience]

Hi PDConscience, thanks so much for this valuable info. I’m hoping that B12 is the problem. I don’t want to go on anymore drugs. I’m waiting for the results to come back. Thanks again!

[Burlingtongal in reply to Burlingtongal]

Just received b12 test results and they are normal.

[silvestrov in reply to Burlingtongal]

That is good to hear though it may be misleading, meaning you may have a 'functional' B12 deficiency. Unless they test homocysteine and methylmalonic acid levels, the test results should be considered incomplete.

Methylmalonic Acid and Homocysteine as Indicators of Vitamin B-12 Deficiency in Cancer

"Normal or high serum vitamin B-12 levels can sometimes be seen in a B-12 deficient state, and can therefore be misleading. High levels of Methymalonic Acid (MMA) and Homocysteine (HC) have been identified as better indicators of B-12 deficiency than the actual serum B-12 level itself."

ncbi.nlm.nih.gov/pmc/articl...

I am of the opinion that everyone who is taking (any form of) L-dopa they should supplement their regimen with B12/methylcobalamin to prevent rising homocysteine, MMA level(s) and decrease the risk of peripheral neuropathy.

[PDConscience in reply to Burlingtongal]

Tests for B12 levels are notoriously famous for their unreliability. B12 levels need to be considered in conjunction with other indicators eg. homocysteine levels. Unless your homocysteine is <10 µmol/L, supplementation with aforementioned B12/B complex should be seriously considered...

[Blackfeather]

Medicinal mushrooms, not "medical" mushrooms. Also vitamin d3 level is very important for neurological function. PeP are notoriously deficient in vitamin d3, the active form of vitamin d.

[Burlingtongal in reply to Blackfeather]

I just received my test results from dr. My b12 level is normal. I was hoping it would be that easy. Dementia is my worst fear. As far as d3, I had that checked about 6 months ago and it was low so l’m taking a supplement. I will look into medicinal mushrooms. Thanks again for you thoughts and recommendations.

[Kpaschel1]

I’m on Exelon for dementia and can’t imagine my life now without it. Helps with my motivation, socialization, apathy and clears my head of confusion to work on more detailed work such as finances or written communications. I hope you can experience the same positive results. Good luck

[Burlingtongal in reply to Kpaschel1]

Kpaschel1, thank you so much for your response. You've given me hope. My life seems so out of control now, I never used to be this disorganized and confused. I have the medication but haven't started it yet. I hope I have the same good results you describe.

[Burlingtongal in reply to Kpaschel1]

Hello paschel1, I've been on Exelon for 3 months now and wanted to let you know that it has made a dramatic difference in my life. I have to say I was reluctant to take it, but so glad I did. I'm much more focused and clear and I get so much more done in a day. Thanks for encouraging me to take it.

[Kpaschel1 in reply to Burlingtongal]

Burlingtongal, that’s fantastic that the Exelon is working for you. As much as I’m not thrilled about taking a lot of medication, Exelon is definitely one I could not do without. I wouldn’t have much of a life without it. So glad it has helped you. Keep in touch

[Kpaschel1]

Burlingtongal, Have you had Neuropsych testing done? The test was very helpful to determine my cognitive strengths and deficiencies. I hope you try the Exelon sooner than later. I had gotten more accomplished in the past four months that I’ve been on the drug then I had over the past three years. It doesn’t solve all of my problems and still have some off days but didn’t expect it to be a miracle drug. I have faced the fact that my brain will never function the way it used to. But I’m grateful for what exelon has given back to me. Keep in touch as I would love to hear your progress over the next few months.

[Burlingtongal in reply to Kpaschel1]

Kpaschel1, No I did not have the testing. Actually, I thought that is what they were going to do at my last appt. But after I told her my symptoms and she asked me a lot of questions, she told me about the different types of dementia (Parkinson's, vascular, lewy body, etc. ) and suggested I try Exelon. What you are saying is how I feel, days go by and I have all these plans of what I'm going to do that never get done. I get very angry with myself. I guess I haven't come to terms with the idea that how I functioned in an earlier life is gone. Thanks again for your input. I'm anxious to try it now. I will keep you updated.

[sharron2]

My husband was tested and evaluated by a psychiatrist that specializes in people with neurological diseases. You might want a referral for an evaluation to be done by a specialist with intimate knowledge of neurological diseases.

We felt we got a very thorough review and assessment of my husbands deficits, especially as they related to his Parkinson's.

[rjpinette in reply to sharron2]

My husband was tested and evaluated by a psychiatrist that specializes in people with neuro problems also - his test showed that he has PD related dementia not Alzheimer's. So hopefully that's a good thing I think. He's very clear some days and other days he says weird stuff but I deal with it.

[MWLE]

Exelon and other acetylcholinesterase inhibitors work b y slowing the breakdown of acetylcholine in the brain. If you don't have enough in the first place, this will not help much.

I would recommend supplementing with Alpha GPC. It is a choline containing supplement.

It helped my father's dementia more than the drug similar to Exelon that he is taking.

[Hidden]

have you taken exelon? is exelon for dementia? my fathers doctor also prescribed exelon for him..

[Greenday]

Citicoline is what has been used in many human studies as an adjuvant therapy in Parkinson's for the delay of cognitive decline and the control of certain symptoms.

* Effect of citicoline adjuvant therapy on mild cognitive impairment in Parkinson’s disease

ijcem.com/files/ijcem001792...

* Citicoline in the treatment of Parkinson's disease

researchgate.net/publicatio...

Citicoline has a proved record of safety and efficacy in multiple human studies

* Citicoline: Pharmacological and clinical review, 2010 update

researchgate.net/publicatio...

Other effective agents may include the cholinesterase inhibitor Huperzine

* Huperzine A: Is it an Effective Disease-Modifying Drug for Alzheimer’s Disease?

ncbi.nlm.nih.gov/pmc/articl...

* Comparative studies of huperzine A, donepezil, and rivastigmine on brain acetylcholine, dopamine, norepinephrine, and 5-hydroxytryptamine levels in freely-moving rats.

ncbi.nlm.nih.gov/pubmed/169...

Also possibly Sulbutiamine as an adjuvant therapy with a cholinesterase inhibitor :

* Effects of the association of sulbutiamine with an acetylcholinesterase inhibitor in early stage and moderate Alzheimer disease

ncbi.nlm.nih.gov/pubmed/176...

[Hidden]

Dr Bruce Fife states that using coconut oil in your food can reverse these type of symptoms. Check out his video on you tube.

youtube.com/watch?v=_P5J9HK...(Not working as expected?)

[Stazina]

Burlington , NJ or VT? My husband was not diagnosed with Dementia, however the meds he was put on caused him to have some visual hallucinations and cognitive deficits. Once these meds were discontinued these symptoms went away. I'm so sorry you're feeling scared.

[BUZZ1397]

Be patient and wait result of your MRI because dementia symptoms can be caused by Other problems. may not be PD related.