I NEED GUIDANCE

This will be a long post.

My husband has gone from a diagnosis of probable Parkinson's, to Parkinsonism, to Lewy Body Dementia. At the first diagnosis of Parkinson's he was given Carbidopa-Levodopa 25/100 and told to titrate it to 3 pills a day within 3 weeks. I know how stupid that was now. That was way too fast; he experienced extreme confusion and one, maybe two very, very minor hallucinations, but he has never been the same since then and I cannot help but think that the med had something to do with the way he is now, just 18 months later. He started becoming confused in June of this year. It was almost like a switch was turned off: one day he seemed okay, as okay as someone with such a diagnosis could be, and the next day he was just totally confused. An ER visit revealed dehydration. After saline solution he got better, and answered all the neurologist's questions. About four weeks later he became confused again. Back to ER. No UTI; No dehydration. 3 to 4 weeks later, confusion once again became unbearable. Back to ER. They admitted him, thinking he had bladder retention issues that would cause kidney problems and thus, confusion. After 2 grueling days in the hospital they discharged him and we immediately went to see the neuro, who prescribed Rivastigmine, saying it was hallucinations. He took the first pill (3 mg) on August 11th. Yesterday, November 13th , at our next appointment the neurologist said she thinks the hallucinations are increasing, and she increased the rivastigmine to 4.5 mg twice a day. Two and a half weeks ago he had an abscessed, infected-to- the- bone tooth and it had to be pulled. Dentist gave him numbing medicine which was lidocaine and something else and Amoxycillin 500 mg 3 times a day for 7 days. At the same time he was also taking doxycycline for bronchitis diagnosed after he was coughing up blood. Neurologist says any time there are antibiotics it could take several months for any confusion to clear or for him to become the way he was prior to the use of the med. Anyway, I'm just so frustrated, not to mention how he feels cause that's what matters. He stays in a confused state; he has no conversation with me that makes sense. He tells stories about things that don't make sense; he can't find the right words. I don't know if we are with the right neurologist; I don't know if this medication is correct. Rivastigmine is going to be very very expensive on a new Medicare drug plan next year that we're going to. He only takes Sertraline 100mg at night and Amitiza 24 mg twice a day and some supplements. All this confusion began in June of this year. It was like one day he just turned off ; he cannot communicate. He cannot get out the words he wants to say; he's very frustrated; he's tearful; and so apathetic. He's tried to control this disease with exercise and it did not help as much as time has gone on. He has done Voice therapy, physical therapy and still works with an exercise physiologist. I just asked for Language therapy and to begin PT again. He is also in vision therapy. I am an emotional wreck and exhausted. I feel so awful for him. I just need help, but not sure what to do next. I am 24/7 with him. If you have gotten to the bottom of this post I appreciate your time and hope that you can lend any advice or suggestions at all. Many thanks!

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The following response may be considered cold and pragmatic but it is from a distant third person looking at your situation who is old and is politically incorrect.

First rule of a care giver, without exception, look after yourself first. If you do not take care of your rest, recreation, meals, etc and instead demand too much of your self your own health will become a factor and all is lost.

It must be very difficult for a specializing neurologist to admit that in this case ,they do not have the answer or the experience and I would not expect them to suggest a second opinion from other doctors but the fact that the medication prescribed was too fast indicates a problem . Somewhere with in a 250 mile trip from where you are, there is probably a clinic, hospital or experienced doctor who is treating this exact situation. You need to find them, and your doctor should help you. I have experienced that younger doctors ( perhaps especially female ) will try too hard to look after the situation themselves and not admit that they need or get help. There may be a support group ( Alzs, PD, Caregivers ) that you can contact , where you can discuss doctors and experiences . You are not alone, do not try to do this alone. Get some help in every way you can, contact your local hospital for out patient assistance to come to your home etc.

Remember you are not alone and it is important that the prime caregiver (you) be in good condition in every way.

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I am so sorry you and your husband are going through this. I have heard about a condition called aphasia, my friend Karen’s mother developed this condition as her Parkinson progressed, it obviously was very frustrating for her mother as her words came out all wrong. I do hope things improve for you both.

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This is a long answer.

So sorry to hear of your problems and like the GymBag stated, also take care of yourself.

The problem with treating DLB or PD is answering the question 'which substances will prevent misfolding of alpha synuclein/lewy bodies (AS/LB)?' There are many chemicals which have been shown to decrease AS/LB 'in vitro' - the test tube, but the more important question is, which substances will decrease AS/LB 'in vivo' - in a person??? I am posting (a non-exhaustive) list of substances which have been shown to decrease AS/LB 'in vitro'. The problem is which one or combination of supplements to use?

DLB and PD are both alpha-synucleinopathies':

The alpha-synucleinopathies: Parkinson's disease, dementia with Lewy bodies, and multiple system atrophy.

ncbi.nlm.nih.gov/pubmed/111...

Minerals which have been shown to decrease alpha synuclein mis-folding.

Magnesium:

Magnesium inhibits spontaneous and iron-induced aggregation of alpha-synuclein.

ncbi.nlm.nih.gov/pubmed/118...

The form of magnesium used in this study was magnesium chloride (MC). MC comes in a liquid form which can be sprayed on the skin (1 spray contains about 12-15 mg of Mg) and is absorbed transdermally then enters the blood stream to be spread throughout the body.

Magnesium threonate is a synthetic (highly absorbed) form of Mg which has been shown to decrease improve dementia symptoms in an open-label clinical trial:

OPEN LABEL TRIAL OF MAGNESIUM L-THREONATE IN PATIENTS WITH DEMENTIA

"Increased red blood cell magnesium levels were associated with improvements in overall cognition and executive functioning in some but not all patients."

academic.oup.com/innovateag...

Selenomethionine (the organic form of selenium):

Selenomethionine prevents degeneration induced by overexpression of wild-type human alpha-synuclein during differentiation of neuroblastoma cells.

ncbi.nlm.nih.gov/pubmed/163...

Selenium is to be used with caution for those with diabetes. 200 mcg/day of selenium is a safe dose and the upper limit is 400 mcg/day.

annals.org/aim/fullarticle/...

Vitamins associated with cognitive impairment:

B12/cobalamin

Low Vitamin B12 Tied to Brain Atrophy, Cognitive Impairment

medscape.com/viewarticle/75...

Also, recent studies have implicated endoplasmic reticulum (ER) stress and PD:

Endoplasmic Reticulum Stress and Parkinson’s Disease: The Role of HRD1 in Averting Apoptosis in Neurodegenerative Disease

hindawi.com/journals/omcl/2...

A B12 deficiency can cause ER stress:

Decreased vitamin B12 availability induces ER stress through impaired SIRT1-deacetylation of HSF1

nature.com/articles/cddis20...

I am a big fan of methylcobalamin/B12 because more B12 is required for anyone taking any form of levodopa. Levodopa raises homocysteine levels which is associated with cognitive impairment and heart disease. I have taken 5 mg sublingual for at least 5 years and have had zero negative effects.

Methylcobalamin: A Potential Vitamin of Pain Killer

hindawi.com/journals/np/201...

Thiamine has gained popularity on this forum because recent studies have shown that it can improve PD symptoms. Thiamine also, like B12, has 'in vitro' evidence showing that it too can lower endoplasmic reticulum stress:

Thiamine Deficiency Induces Endoplasmic Reticulum Stress in Neurons

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

Thiamine on HU: healthunlocked.com/parkinso...

Amino acids:

Nacetyl-cysteine has been posted much on HU and it too has 'in vivo/mice' activity against AS/LB.

Oral N-Acetyl-Cysteine Attenuates Loss of Dopaminergic Terminals in α-Synuclein Overexpressing Mice

journals.plos.org/plosone/a...

And NAC is one of the few substances which has been shown to help PwP:

sciencedaily.com/releases/2...

The combination of amino acids, acetyl l carnosine and alpha lipoic acid.

Combined R-alpha-lipoic acid and acetyl-L-carnitine exerts efficient preventative effects in a cellular model of Parkinson's disease.

"We demonstrated that 4-week pretreatment with LA and/or ALC effectively protected SK-N-MC human neuroblastoma cells against rotenone-induced mitochondrial dysfunction, oxidative damage and accumulation of alpha-synuclein and ubiquitin."

ncbi.nlm.nih.gov/pubmed/204...

This combination is best taken on an empty stomach between meals. Because acetyl l carnitine has a stimulative effect it should not be taken at night. Also, the best form of alpha lipoic acid is R-alpha lipoic acid. Many brands combine R-alpha lipoic acid (natural) with S-alpha lipoic acid (synthetic) and R is the more potent of the two.

The sugar mannitol.

A blood-brain barrier (BBB) disrupter is also a potent α-synuclein (α-syn) aggregation inhibitor: a novel dual mechanism of mannitol for the treatment of Parkinson disease (PD).

ncbi.nlm.nih.gov/pubmed/236...

Herbs

The favorite herb I have taken is Scultellaria baicalensis (Skullcap) because its main component, baicalin, is converted into baicalein by intestinal bacteria then spread throughout the body.

Baicalin is a 'prodrug' - "A prodrug is a medication or compound that, after administration, is metabolized (i.e., converted within the body) into a pharmacologically active drug." Wikipedia.

Baicalin, a prodrug able to reach the CNS, is a prolyl oligopeptidase inhibitor.

ncbi.nlm.nih.gov/pubmed/186...

A Russian study:

Flavones from root of Scutellaria baicalensis Georgi: drugs of the future in neurodegeneration?

"The main flavones isolated from Scullcap root growing in Central Europe were baicalin (baicalein-7-0-glucuronide; 10 % up to 14 % of dry root mass), baicalein (5,6,7-trihydroxyflavone; up to 5 %), wogonin (5,7-dihydroxy-8-methoxyflavone; 0,7 %), wogonoside (wogonin-7-0-glucuronide; 4,0 %), oroxylin A (5,7-dihydroxy-6-methoxyflavone), and Scullcap flavones I and II (Bochora´kova´ et al. 2003). '

"Their neuroprotective

potential has been shown in both oxidative stress-induced and amyloid-b- and a-synuclein-induced neuronal death models."

researchgate.net/profile/Se...

One of the listed components of S. baicalensis is oroxylin A and it has dopamine re-uptake activity:

Oroxylin A improves attention deficit hyperactivity disorder-like behaviors in the spontaneously hypertensive rat and inhibits reuptake of dopamine in vitro.

europepmc.org/abstract/MED/...

The best time to take Skullcap is prior to bed time. Skullcap is a mild sedative:

"Baicalin is an active compound originating from the root of Scutellaria baicalensis Georgi, which has been used for anti-inflammation, anti-bacteria, anti-hypertension, anti-allergy and sedation since ancient China, though the neuronal mechanisms involved in the sedative effect is still unclear."

ncbi.nlm.nih.gov/pubmed/214...

But baicalin should not be used with either vitamin C or NAC:

"Thus, in general, their application together

with reducing agents (N-acetylcysteine, ascorbic acid, etc.) should be avoided."

researchgate.net/profile/Se...

So take NAC/Vitamin C early in the day and S. baicalensis/baicalin prior to bed time.

I use baicalin/Skullap for osteoarthritis and there is a product for OA:

limbrel.com/about/limbrel.php

There are cases of liver problems with limbrel so taking NAC is a perfect compliment:

ncbi.nlm.nih.gov/pubmed/227...

N-Acetylcysteine Improves Liver Function in Patients with Non-Alcoholic Fatty Liver Disease

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

Other herbal components...

Curcumin is a component of tumeric and has been extensively tested on numerous diseases. It has been shown to be effective even in Wilson's disease tests but it has a bio-availability issue. Meaning, it is not well absorbed in the gut and, unlike baicalein, it has difficulty crossing the blood brain barrier. So if you order curcumin/tumeric make sure it is in a liposomal form or coupled with piperine. Piperine enhances bioavailability of other drugs and herb components alike. Piperine is derived from black and long peppers.

Piperine induces autophagy by enhancing protein phosphotase 2A activity in a rotenone-induced Parkinson's disease model

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

Curcumin reduces alpha-synuclein induced cytotoxicity in Parkinson's disease cell model.

ncbi.nlm.nih.gov/pubmed/204...

There are other herbs and associated components which have been shown to reduce peripheral neuropathy but, in my opinion, what I have listed are the best options.

Yes this is a long answer....best wishes.

Rich

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I would go with silvestrov's recommendations - IMO they are more likely to show improved results than the latest, most expensive Medicare treatment. Of his extensive list that I have tried I particularly recommend Mannitol, Curcumin with Pepper ( take it with a fatty meal) and Thiamine. NAC is also worth a try.

You may be questioning why these common and cheaper herbs/supplements are not prescribed more often. The simple answer is that there is no profit in doing so and it is likely that a doctor recommending these would face sanctions including being struck off. In fact I have found that big Pharma often try to lobby to get governments ban these home remedies on safety grounds (after having isolated the active ingredient for use in their products) e.g. I read Mucuna Puriens potentially being banned in Australia.

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Alexask,

Thank u for responding with the tips and ur experience! I hate thinking about how big Pharma works. My mom always told me everyone gets what's coming to them in the end.

Take care

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Thank you for this information!

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Rich, thank you thank you for posting really appreciate it Mary

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Rich,

You are such a treasure. The time and thought that went into this reply to me is appreciated more than I can say. I hope someone will remind me how to print from here. God bless you

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It is my pleasure to forward information on this site. Here are some other tidbits of info. I featured baicalin/Skullcap and baicalin, like curcumin, has COX2 inhibitory action - it is a pain killer.

The antiinflammatory and analgesic effects of baicalin in carrageenan-evoked thermal hyperalgesia.

greenmedinfo.com/article/ba...

In the article the authors note baicalin is as effective at killing pain as ibuprofen.

I have used several brands of baicalin but this is the best:

liftmode.com/baicalin-powde...

I take it prior to bed and it does help to relax you for bed. If anxiety is a major issue baicalin effects benzodiazapine sensors and when it is mixed with L-theanine, an amino acid from black/green tea, it is doubly relaxing:

ncbi.nlm.nih.gov/m/pubmed/2...

ncbi.nlm.nih.gov/m/pubmed/1...

Best wishes and have a good weekend.

Rich

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Thx once more!

Yes, anxiety is an issue. I will look into this, as currently he is taking 100mg Sertraline nightly and he has a script for Alprazolam (1/4 or 1/2 of a 0.5 mg tablet) that he rarely uses. Scary stuff.

Have a good Thanksgiving!

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It sounds like life is very difficult and it must be hard for you to see your husband go through all this. He is lucky to have you.

I really recommend he try NAC, magnesium and B12, especially the NAC. I really believe it helps with mental clarity. It is cheap and has very few side effects other than dry mouth which seems to pass in time. As it promotes glutathione production, a powerful antioxidant, it should help with many symptoms.

I expect he is already taking alot of things and adding more seems overwhelming, but worth a try.

Good luck.

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I appreciate your input! Yes, some days I just don't even ask him to take some of his supplements just because there's too many or he's just feeling like what's the use. Today was a tearful day for both of us. I know ya'll say not to show certain feelings around the PWP. I'm failing miserably at that.

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Your husband's symptoms sound like mine, only his sound much worse. Try the vitamins and supplements the folks on here recommend. So far I have tried Niacin and Mannitol and I've been taking them daily and doing much better lately. I still work full time, so any confusion and memory loss on my end makes my life really difficult. No doctor is likely to recommend vitamins and supplements that aren't prescription. I was put on a variety of prescription meds, which all made me worse overall, until finally I stopped taking them all. I'm not suggesting your husband stop taking any meds, I'm just suggesting that some of these vitamins and supplements may slow down his decline and help him, as they did for other people on here, myself included.

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NancyJHP,

Thank you. Yes, I agree about the doctors only wanting to give prescription drugs and not talk about supplements. We have seen a naturopath a couple of times and it's a totally different ball game with him. Have you read anything about cholesterol medicine possibly contributing to the development of Parkinson's?

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God bless you my love, you and your husband

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You, too!

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Do not give up, do make some time to take care of yourself even if it feels like it's at your husband's expense. He needs you well.

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Yes, Rebtar, I am finally believing that. People have been telling me that for quite some time now I hope it's not too late

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Boyce3600, I’m so sorry about your husband’s troubles. None of us here are competent to assesss the merits of his medication regime. I do know that LBD is a tough situation for the person and the caregiver, and that even a minor procedure such as a dental extraction can be a major setback for anyone with PD. Take refuge in your love for each other, read everything you can about LBD, rely on your faith, and most of all,seek help. I worked as a geriatric social worker for many years and I strongly recommend that you consider formal services, either private pay or through your local Area Agency on Aging. Your health and well being are essential to your husband’s ability to remain at home, and you must get adequate sleep and time to yourself for the sake of your own physical and emotional health. Also, seek out support groups for caregivers of people with this condition. Other folks may have helpful suggestions and referrals.

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My plan is to try to get someone to come for a couple or 3 hours 1 or 2 days a week just as soon as all the paperwork for change of insurance is complete. We are losing our company insurance Jan 1 and I have been consumed with making right choices. I believe I have developed carpel tunnel and maybe some nerve damage in couple of other fingers from all the extra things I have taken on here at the house and from preventing.. or trying to prevent him from falls, in addition to helping him in and out of chairs and onto and up from toilet, etc.

Thank u for the advice

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Yes, you absolutely must get a break, even more importantly for emotional respite than for physical relief. See if the doctor can write a prescription for in an Home occupational therapy evaluation. Although Medicare will not pay for bathroom modifications, a raised toilet seat in a frame that can double as a commode and grab bars in the shower area can spare your back and are not too expensive. A recliner that lifts the person up with a touch of a button is more costly, but nice to have. If you are on more than one floor, consider a stair lift. Many people qualify for assistance with these modifications as well as for home health aides through the area agency on aging in your county. Unfortunately, Medicare does not pay for long term, so called custodial care. The AAA’s are a good referral source even if your husband ‘s income and assets are too high for government assistance through Medicaid. The AAA can also provide guidance on choosing a Medicare supplement or Advantage plan as well as Part D (drug plan). These decisions can be difficult since the system is so complicated and it’s hard to predict future needs.

My SO, who is handy, installed grab bars recently although I don’t need them yet but it’s reassuring to know that they are there if I’m alone and feel dizzy or lose my balance.

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My aunt had LBD that was initially treated as PD (almost 20 years ago when even neurologists had not heard of LBD). The PD meds made her worse. A good support site for LBD is The Lewy Body Society at lewybody.org.

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Thank u. May I ask how long she lived with it

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I'm trying to remember. Maybe 6 or 8 years from onset, but she was in her late 70s and they were very wealthy so she had 24/7 at home nursing which kept her alive probably longer than most others.

I had another friend diagnosed at 77 who lived about 2.5 years from onset, but his partner was not a good caregiver.

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