Are there good days and bad?

[tlovins]

The first day after receiving Sinemet (not sure how to spell that), Dad seemed to perk up a little and come out of the "death stare." It was short lived though. The next day his interaction decreased and his words became mumbly again. Again the day after he seemed a little better again. The last two days not so good. I guess maybe this is the "roller coaster" I have heard so many of you refer to. They said they will increase dosage after two weeks but so far it doesn't seem to have helped at all with initial dosage strength. I guess I'm really wondering if, medicine aside, if he were not taking any, would he have good days and bad days.

[honjen43]

Hi tlovins. If the docs don't give the meds, or patients don't take them, then their efficacy cannot be assessed!

That said, my husband, having CBD/Parkinsons Plus, took Sinemet and as he increased the dose it made him increasingly nauseus. After about 10 days of this, we returned to Dr. He changed to Madopar and this seemed better for him. However, it still did not make a great deal of difference to his gait or behaviour.

Because they seem to work for Parkinsons there seems to be a suggestion, or perception, that they should help Parkinsons +. We, and several others, here have felt they did not provide any better quality of life.

The neurologist who helped my love removed Madopar from the drug regimen and asked us if we were prepared to try 'herbal or natural' treatments. He then handed me half a jar of organic coconut oil and said to give 2 desertspoons twice a day. My love did not object or refuse as he commonly did with such suggestions, and enjoyed it with icecream! I tried some too,expecting it to be oily and unpleasant - but it was not. However it did have an extreme laxative effect!!!

If you try it, start with 2 teaspoons and gradually up to dose above! Also, coconut oil becomes liquid at around 20°C (as I found to my cost when I stuck some in my carryon luggage coming home from Pacific islands!) So if in a warm climate keep it in the frig!

It is known to help the brain, and our neurologist took the higher dose every day. He seemed a very bright person and obviously believed in it!

I tried to persuade my love to take CoEnzyme Q10 as I have found it helps me think - seems to oil the cogs! He would not take it or anything else such as fish oil which I also take.

I don't have a diagnosed brain disease. I just find my memory and brain function seem to be poor (similar to my post-70s peers) and find I can think and function better if I take 1 capsule CoQ10 daily and 3 fish oil as well. No side effects, except Dr will require me to stop taking them if I need an operation, as fish oil affects blood clotting minimally I believe.

We did not explore the social side of Parkinsons groups. I got in touch and the nurse suggested exercise was the best medicine. My love joined my gym, and went occasionally when I needled him! He did not think he needed the exercise and at this stage did not relate to Parkinsons traits. We did go to one class, 2 weeks before he got jelly legs, and that was Dance for Parkinsons. He enjoyed it and think we would have continued. Wish he had made up his mind to meet them earlier!

So sorry your Dad is obviously feeling low and overcome by this disease. See if you cal find a Parkinsons group locally and get him to a function. Also look for Seniors groups. There are likely to be all sorts there, fit and unfit, lively and unlively! You may find 1 or 2 people he may be able to relate to. If he likes music, take him to something as it can be very therapeutic and calming, remind him of his youth.

Meds or not, you will find it best to take each day as it comes, and 1 day at a time! Try and include a bit of laughter and a hug, and do you best to minimise the frustration and anger! Try and get out together, or organise a bit of respite. It is good for you both, and best got into routine early. We did not manage that.

Hope you find some of this helpful.

Hugs

Jen xxx

PS. My love experienced very high BP when he began taking Sinemet and/or Madopar. Not sure if was due to meds, or some trigger in his brain that 'forgot' to regulate it. At same time, Dr noted a very big drop in BP when he stood up, so may be something to watch out for, as it may be one of those stages we all try to recognise! With or without the meds!

[aliciamq]

The death stare - that's perfect. sinemet wears off quickly. My husband says he notices after an hour and a half . He was also taking amantadine. Neuro took him over a weeks time. It seemed to make him worse - He put himself back on it!!

[tlovins in reply to aliciamq]

After I typed that “death stare” I worried it might sound insensitive to others dealing with this. It has been the hardest thing for me to see. The first time I saw it I watched to see if his chest was rising and falling and it wasn’t. I motioned to my sis-in-law and she yelled his name in panic and he slowly turned his head and sucked in a big gasp of air. Shook me to the core

[Cp612]

Helllo, in our experience Sinemet was of no use to my husband and after 3 months or so he was moved to Amantadine (he has PSP). The switch was 2 years ago yet his decline is noticeable but if he came off the Amantadine maybe he would be worse, the medical profession simply do not know. My husband is not in any pain at all and when asked always says he is fine, amazing really considering the state he is in overall - perhaps that is the cruelty of the disease and yet a good thing at the same time as he does not realise? Whichever way it is a hideously awful illness. All the best to you.

[easterncedar]

Our neurologist said the benefits, if any, of Sinemet or amantadine would only appear after weeks of use, although bad side effects would be quickly evident. My sweetheart took Coq10 at high doses for a couple of years. Nothing ultimately helped.

[tlovins in reply to easterncedar]

That is helpful to know thank you. No one has mentioned amantadine yet. They are re-evaluating next week with the sinement.

[Katiebow]

Ben didn't respond at all to Sinemet and no noticeable difference with Amantadine either, I was worried he came off Amantadine that things would be worse but made no noticeable difference. Ben also took her high strength Q10 for a year but I read that extremely high doses needed of the top quality Q10 and that would be unaffordable, so that was no longer an option. Again I noticed no difference when he stopped takingQ10.

Hope that helps

Love Kate xx

[Kevin_1]

Hi tlovins

I can see you have some good replies above. However I would like to give you some guides to medications. I expect you already know this, but its fairly important stuff and someone else may find it useful.

First off different medications have different periods to reach efficacy. So, for example with some you won't see any improvement for a week or more after starting them.

Others, like some sedatives can be efficacious within thirty minutes.

Next, each medication has a half life. That is the period of time it takes for the amount of med. in the bloodstream to halve. This is the basis for setting the frequency of the dose.

Side effects. Often side effects diminish over a period. So for example the side effects of citalopram, if there are any, diminish over about ten days.

Dependency: Our bodies adjust to medication and stopping some suddenly can throw our metabolism into disarray until it readjusts. So, taking citalopram, again, the medication needs to be 'titrated down' e.g. the dose reduced, over a period, ten to twenty days in this case, to allow the body to gently readjust.

All of this information is readily available if you search for it on-line. However generally it is better to work with the prescriber who may have alternatives to try too.

Lastly no-one sees the effects or side effects of medications better than the immediate carer. We have stopped many unnecessary meds. which were not helping, or which caused too much drowsiness or which had helped, but were no longer needed. Again citalopram was one of these. We suggested a 'holiday' from it to the G.P. who advised us how to titrate it down and what to watch for (mental and muscle agitation) and when Liz was completely off it we found she was just a good as she was on it. By doing this we avoided accumulating more and more medications in her bloodstream than were necesary.

I hope this isn't TMI. Carers are in pole position to monitor medication and it does make a difference.

And, yes, there are good days and bad days. Sometimes a bad nights sleep can lead on to a flatter day. At other times it is a sudden down turn leading to new needs. We found that after every downturn there was a slight improvement over the following week.

I do hope this is of some help.

Forgive me if it is all old hat.

Wishing you both the best

Kevin

[tlovins in reply to Kevin_1]

Thank you Kevin. Definitely not tmi. At this point I’m trying to learn as much as possible. Thank you for your insight.