My dad is diagnosed with either Parkinson's with dementia or multiple system atrophy (shy dragers). We are wondering if anyone stopped taking the Levo/Carbidopa or middodrene or pyridostigmine or Fludrocortisone or omneprozole? We have noticed a real down turn in my dads dementia. He can't even drive now and was doin much better just three months ago. Is this just regular progress of disease? My mom wonders if the meds are making him worse. She especially does not like the levodopa/carbo because it gives him a bad body odor. Any advise? Anyone got off meds? What happened? Thanks so much. Love to you all.

That is a lot of drugs and I don't even know what many of them are. First, know that if you suddenly stop taking levodopa, it can be fatal (look up neuroleptic syndrome, there are some posts about it here). You must titrate down slowly and under a doc's supervision to be safe.

Many drugs can cause hallucinations, etc., I would google them to see what side effects are listed. Also, this is huge: talk to a knowledgeable pharmacist about the mixture of drugs your dad is taking. Perhaps by themselves, they are OK, but when you start mixing things together, boy oh boy can crazy side effects emerge that are not listed on any website.

I'd also go to the PD caregivers forum (just type in "parkinson's caregiver forum") and no doubt there is one for shy drager as well. You might be surprised to read what others have said about the drugs your dad is taking.

Anytime something changes rather quickly, I suspect a drug issue. You will know if you taper off the drugs, one at a time, and see what his reaction is and how he does.

Good luck, it sounds very scary. Just learn as much as you can and use it for your dad's best interests.

good advice from lurkingforacure. Please have this conversation with your dad's physician. Looks as though your dad has much difficulty with orthostatic hypotension--very low blood pressure upon rising from lying or sometimes sitting position. 3 of the drugs he is taking is to address the low blood pressure. I am sympathetic to you and your mom wanting to decrease and or stop the drugs not needed. Talk to his doctor first.

Thank you for your replys. Yes my dad has very low blood pressure. He has had so much dizziness that he was always bending down to the ground and holding on to something. Kind of like he was so dizzy he was going to fall off the face of the earth. Now, with this combo of meds he is not dizzy anymore. This is the first time in years that he says he is not dizzy all the time. To me that was the main concern to get the dizziness under control. That was such a miserable symptom. My mom complained because they could not go anywhere because of the dizziness. Now, he can go some places but is so out of it he can't talk to people and keep up with what is going on at all. He is so dependent on my mom he has become her infant and he freaks when she is not with him. She is loosing it because she needs a break from him sometimes. How do we deal with this? Any ideas would be helpful. Thanks.

I have 2 friends that stopped taking sinemet VERY SLOWLY over a period of months using liquid sinemet....it can be done. Both are using fava beans and extracts, and mucuna bean capsules and fermented papaya.....check into dietary supplements and foods also. Book very helpful.....Natural Therapies for Parkiinson's Disease by Dr.Laurie K. Mischley . Read and take to your Dr as a good reference for discussion. God Bless You. Aunt Bean

If I may be so bold...I feel for your whole family as illness impacts everyone. However, your mom sounds near her breaking point. If she breaks, then what happens? I suggest maybe some other close family members help to give her at least one day a week "off" so she does not lose it. Remember the oxygen in the airplane advice; your mom would be first to get oxygen then your dad. He is only going to do well if she is good mental shape to keep up with all the responsibility. I know people are busy but surely someone could give her a break on the weekend.

LFAC gave great advice; seek out caregiver info on the net and check into local hospital to see what sort of caregiver support groups are nearby. She may want a more interpersonal connection.

Local SDS/MSA Support Groups (USA)

http://www.shy-drager.org/local-support-groups#sthash.Bh3b0lTI.dpbs


Laura

Yes my mom is about to break. I have the rest of the family now helping. They are bringing dinners and doing a lot more. I am here with my dad because I have chronic pain, tbi and other problems. I can stay with him and do while I insist my mom go out. The problem is he walks around saying where is mom, when is she coming back, why am I getting left here. He accuses her of having an affair and just has serious wrong thinking. How can you tell him that she needs a break from him? Heartbreaking. I tell you.

I wondered if that may happen. It is heartbreaking; especially since you can never feel 100% confident with diagnoses since so many symptoms over lap and can take some months or years before a neurologist can figure it out.

Just once I would like to ask neurologists who put older patients on insane drug cocktails if this is the treatment they would expect for their mom or dad...

Laura

Are both antihypotensive drugs. Shy-Dragers disease often presents with acute hypotension. If dad was to go off of sinemet cold turkey, I would think this would be a very bad thing. Shy-Dragers is also often dopamine unresponsive. The pyridostigmine is an acetylcholine esterase inhibitor, which are about the only class of drugs considered useful in dementia control, especially given to Alzheimer's patients, as there are no drugs proven useful in stopping the symptoms of Alzheimer's. Maybe dad is going down because the l- dopa isn't doing anything for him, but is making his hypotension worse. The others advise to taper down is correct, but I would get a skilled neuro's opinion on this. My fear is that a quick withdrawal from dopa would see a hypertensive event inevitable, with potential consequences.
As far as your dad being " delusional and obstinate" these are, unfortunately problems that only he can be convinced are part of his current disease state and you can only hope that he can accept this an put his faith in your words to him that he is not seeing things clearly. This kind of ideation is very common among " the terminally medicated", and can destroy life long relationships.