I am feeling overwhelmed with the meds my husband is on and they don't seem to help. We cut his sine met back to four times daily. The added mirapex to help, started him on the full dose three times daily and it just knocked him for a loop. I finally got them and they started with a low dose and we are working up to the full dose. He is on the generic for aricept for memory now for almost 3 years. What concerns me is that I've been reading (which is probably a mistake) that aricept is for dementia associated with Alzheimer's, he is on th highest mg,but he has never been diagnosed with Alzheimer's. I read that you should not take this unless you have been diagnosed with dementia/Alzheimer's. We were told that he had PK with dementia.
I don't want him to take anything that could harm him and I tell you, when the doctor said three years ago,"we are going to preserve what you have", I want to scream. If anything it's worse. When I mention this to the neurologist, he says don't worry because we are also dealing with age! I know that, but he cannot grasp things like directions, conversations, he just has a hard time and feels confused. This med is doing nothing and I read that you can stop it cold, but I don't know what to do. I feel that doctors are a waste of time!!
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tobebo
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You certainly have my sympathy! This seems to be a path we all have to do a lot of work on and investigation to find out what works best. I think it's always wise to start new meds at the lowest possible dose and build up. I hope you won't have him quit anything too quickly but rather slowly so he doesn't have an adverse reaction. I don't know your situation or options but I wonder if another doctor possibly could be of some help. Good luck and hang in there!!
Hi Tobebo. I don't want to make your situation worse, because I don'r know anything more about your husband's condition than you have told me.
Let me stress that none of the medicatons for Pd or Alzheimers or dementia do anything to slow down or stop the progression of any of these conditions. Therefore, whether he is taking them or NOT the condition he currently has is still getting worse. I know that will not please you but it is THE TRUTH.
These medicaions are supposed to hide one or two of the symptoms, until he has to take so many of them that they don't work any longer.
If the medications are NOT helping any of the symptoms then STOP TAKING them. He may not be able to stop cold turkey, but who wlll tell you the truth about that. What I suggest is if none of the medications is helping him, then SLOWLY wean him off them. You may be best advised to cut down one at a time for a short while and see what happens. Then either continue until that medication is finished and then start with another. You may decide to do one madication for a month, reducing a half pill or a whole pill for one wee at a time and when he is down to 50% then stay at that dose and start another medication for a month. In that way you will see if anything gets worse. Don't be put off when something gets worse, just stay with that reduction for the week and if that worsening does not improve then go back to the previous level and start reducing one of the other meds. I hope I have not made this sound improssible to understand.
I am sorry you are going through this and empathize. My Al has been on high doses of senemet and now Rytary that caused dysfunctional thinking in that he seemed too focused on the goal to break down the steps one follows to reach the goal. In a sense, impulsive. At a lower dose, his mind can reason through steps that his body can then follow. Your description sounds different but I thought I would mention our experience if it helps you in some way.
Hi John, I'm sorry it has taken me a year to get back to you. First let me say that everything you have said is everything we talk about. I stoped his dementia med once, slowly, got scared because he seemed to be more confused and put him back on it. I'm going to try not to get afraid and start trying to cut back.none of the mess help at all. Probably the only one that does is his depression med?
We are starting today with Manitol that everyone is talking about to see what happens. Always searching for something natural that might give him relief.
I appreciate your honesty more then you know. Hope all is well with you and again, I apologize for the year!!😊
There are no drugs specially for PD dementia tobebo, so aricept is used. As you know no drugs reverse or stop the condition progressing they are purely to help us manage to live as best we can. i wonder if your neuros are being honest with you about your husbands worsening condition. Sometimes change can be quite rapid especially if there is dementia. I do hope you are getting the support you need from others. Itis very difficult. Careers are heros..
You may read advice here to stop taking meds. Certainly we don't want to be over medicated but neither do we want to feel trapped in our bodies through being very under medicated.
Thank you, I do know that Aricept is used, it is the first med they put Tom on. Since then they have tried to put him on others to work with it only to have me take him off because of the awful side effects. As for the Mirapex that he is on right now, like I said they started him on the highest dose right off the bat and it knocked him for a loop. After 2 weeks of trying to get hold of them, we started low and worked up. I still am not upping him as quick as they say. As of today, we are on l mirapex 2 times a day.
I know that there are no drugs that will really help, only bandage the issue, but I am at a point that I would rather him be on nothing rather then to see him deal with the side effects. Like I said before, he still has problems with stiffness, balance, you name it. But I don't want to be to hasty, so what I am doing is cutting back slowly and we are working together to see if there are any changes negative or positive.
I sure do appreciate your advice and it has really helped.
I was surprised they put him on Mirapex. It is hard to tolerate and requires very careful titration, they are crazy to give him the full dose at once. Thankgoodness he has you! I agree, the less the better.
Very sorry for your and your husband's difficulties
Approximately 50% of PD patients who have dementia have the additional diagnosis of Alzheimer's disease:
Parkinson's disease dementia: convergence of α-synuclein, tau and amyloid-β pathologies.
"In addition, up to 50% of patients with PDD also develop sufficient numbers of amyloid-β plaques and tau-containing neurofibrillary tangles for a secondary diagnosis of Alzheimer's disease....."
The process for making a drug is slow and expensive. There are some therapeutic compounds which have been shown to slow Alzheimer's (and are good for PD) which have not gone through the drug testing protocols so they will not be prescribed for AD or PD. And since there is not profit motive in testing an amino acid, it will never be tested. Who is going to test the combination of acetyl l carnitine and alpha lipoic acid for 500 million dollars and then sell it for 30$ for a months supply?
Aricept aka donepezil.... and the following study showed that adding acetyl l carnitine as therapy with donepezil worked together in treating AD.
Effects of Acetyl-L-Carnitine In Alzheimer's Disease Patients Unresponsive to Acetylcholinesterase Inhibitors
"The response rate, which was 38% after AChE-I treatment, increased to 50% after the addition of ALC, indicating that the combination of these two drugs may be a useful therapeutic option in AD patients."
The above study is about insulin resistance, diabetes and Alzheimer's disease. Many mainstream scientists and researchers have proposed to change the name of Alzheimer's disease to 'Type 3 Diabetes'.
Another question is, is acetyl l carnitine and alpha lipoic acid good for PD? Yes.
Combined R-alpha-lipoic acid and acetyl-L-carnitine exerts efficient preventative effects in a cellular model of Parkinson's disease.
"Most notably, we found that when combined, LA and ALC worked at 100-1000-fold lower concentrations than they did individually."
The implications for this is very important. When ALA and ALCAR are combined they work at much lower doses so by combining the 2 you get a mega dose of each.
It should be noted that the University of Maryland Medical Center noted that when ALA is taken at high dose it may cause the depletion of thiamine.
I am not done with this response and will add to it soon. I have important business to attend to and must go.
I replied on your page. Thank you for the information. I love coconut oil and I cook with it. I want to start my husband on the regemine that you do every day. I won't repeat myself. I look forward to your opinion after reading my reply from your page!🤗
Tobedo, each person has an individual response to meds - what may be great for one person with PD may not work at all for another. Personally Sinemet *Controlled release* does it for me, versus the immediate release which worked very poorly. You and your husband must monitor his response to his meds, continue those that help and discontinue those that don't.
Dopamine agonists, like Mirapex, were a personal disaster for me. But, in any case, dopamine agonists("DAs") like Mirapex MUST NEVER BE STARTED AT FULL DOSE because full dose varies among individuals. This type of medication must be started at the *minimum* dose and *SLOWLY*, titrated up to each individual's effective dosage. Whoever told you to start MIrapex at full dose does NOT know what they are doing.
Also, any person starting a DA *must* be monitored for orthostatic hypotension("OH"). OH is a fancy term for low blood pressure, and possible fainting, upon standing. Have a home blood pressure cuff. Take his blood pressure when reclining, and then standing. There should be less than 20 points difference between the two measurements.
Good Morning Tobebo, I can certainly appreciate where u r coming from😔. My husband is 77, was diagnosed with Parkinson's three years ago but has actually had it it for five years. He has tried many Parkinson's medications with zero results except for all the bad side effects from them😡. He is off all meds and has been for over a year. It is hard enough to deal with PK , then go to your neuroligist who only gives you another prescription that is costly and does not help at all , so very frustrating. We live in a state that allows medical marajuna to be legal. At first my husband did not even consider using it because he was not educated to the benefits of it.. Mostly all people hear is bad things about it. I started researching the medical benefits and how it was truly helping some people.. We got in touch with a medical Marijuna Dr. who issued my husband a certification card to be able to go to a dispensary in our state for his medicine. We tried different strains before we found what worked best for him and now he is able to get a good nights sleep. He only uses it at bedtime. We found that High CBD OIL used in vape pen is perfect for him. Please don't misunderstand me, my husband still deals with Parkinson's daily with his balance, his feet freezing in place at times, but the tremors r soooo bad.😢. He doesn't drive anymore. Parkinson's robs u of any quality of life so if he can get some relief by using Medical Marijuna I say go for it🤗.
I hope this will help u & your husband by reading our story. I wish u both the best..
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