Happy St. Pat's Day all! (All Irish on my mom's side:). Question for any/all on Sinemet

[goldcap]

My PSP guy takes his Sinemet in the morning & afternoon. I realized that is when he is most agitated and out of control. And unfortunately, usually, it is in the car. Has anyone else noticed a correlation between taking it and violent behavior or agitation?

[Heady]

Hi Goldcap,

My husband is on Sinemet three times a day. I haven't noticed a pattern, but I will watch now. Not that S is normally aggressive, (apathy is our problem) but he does have his moments! Like you it's mainly in the car! Probably that's when they both feel most out of control, not that I saying either of our driving is bad, but it's never going to be up to their standards, is it!!!!!!

It's the bad language I have to put up with. After the last time, when we got home, I sat him down and asked if his voice sudden went, like I know it can, would he like his last words to me what I had just been called! That has produced a marked improvement, not perfect, but certainly more tolerable!

Keep smiling!

Heady

[goldcap in reply to Heady]

Heady, I love how you handled the nasty language. D, sounds like he has Turrets the way he curses over and over almost uncontrollably. I have said to him repeatedly that the yelling is bad enough but if he could change the words he uses it would be easier on me to accept the outbursts as part of his disease. This did not help. I told him what you said to your husband and he laughed his head off! It must have hit home because we had a very peaceful ride to Speech therapy today and he did not lose it even when I could not find the car in the lot. He just sat on a bench waiting patiently for me to return. I have actually become a better driver since I have been carting him around, but I guess you are right it will never be up to his standards and it must feel like they haven't any control. He usually gets upset when other drivers cut me off (and other such things) I haven't any control over. Last time he went off on me I put music on and he started singing softly along all the home. It was one of those rare, I'll always remember this moments, that don't often occur in an average day with PSP ( and certainly not in the car:). Thanks for the good advice! XO

[nomansland]

yes goldcap,my wife was only on it for a few days and was in another world,RD

[goldcap in reply to nomansland]

n, glad you had the sense to discontinue it. Sometimes we get persuaded to "give it a little longer to work", and it is hard not to listen because they are supposed to be the experts. I am learning to trust my intuition, and pay attention. After all we are the ones that are with them! I am glad you are there for your wife and are paying attention. Keep up the good work gc

[quickgel]

Hi Goldcap, My wife was not on any medication but became agitated in the car. I believed her additional distress was due to motion sickness. We lived in an area where the roads are very bendy and it didn't matter how carefully I drove I got 'told off' and unfavourably compared with any driver she had ever sat beside. I tried travel sickness pills but I don't think they helped much, the dizziness and double vision was too deep seated for the pills to reach. I can understand that to feel violently sick on top of all the other problems must be rotten so it became a matter of toughing it out with as much love as I could muster on the day!!! I had no experience of Sinemet and from what I'm learning perhaps it was better that way!!! Then again I might have been the worst driver she had ever come across and had just got around to telling me. Best of luck and kind regards Jerry.

[Brighteyesxxx in reply to quickgel]

I am a person who suffers with travel sickness, so I bought wrist bands and tried them. As they worked for me I bought them for my mum who has PSP. Among other problems... I should add not only do they work but they also worked for my daughter while she was expecting her baby... They also worked for my friends baby. As every time the baby went out in a car she got so upset and sick. Now thank goodness no problems for any of these people love Valerie xxx

[quickgel in reply to Brighteyesxxx]

Thank you, the information is to late to help my wife but may be very helpful to others. Kind regards, Jerry.

[goldcap in reply to Brighteyesxxx]

I used bands when I was pregnant also! And on a cruise when I became seasick so I am familiar with them. I am going to put them on him just for the heck of it neck time we are mobile. Take care Valerie xo Jg

[goldcap in reply to quickgel]

Jerry, I never that about it that way as we too live in an area with very "bendy" roads. Also I traded in my comfy SUV for a compact before he stopped driving. I figured my carpooling days were over and went for practical and good gas milage. Also I tend to chatter nonstop as I have him captive in the car and I am sure it gets on his nerves. When I am well rested I stay calmer and i tell myself there will come a time when I will miss our little excursions out of the house. Take care, Jayne G.

[quickgel in reply to goldcap]

Hello Jayne, I hope the wrist bands help your husband and I'm sure he would miss your chatter if you stopped. Caring is a tiring and stressful business and if chattering is your means of release then chatter away I'd say, your husband will benefit from having a calmer carer as a result. I hope you can enjoy many more excursions before the difficulties of so doing outweigh the benefits. Kindest regards to you both, Jerry.

[easterncedar]

Sinemet had no apparent effect on my sweetheart at all, good or bad. Now, not being able to drive...

[jillannf6 in reply to easterncedar]

i agree EC it is har d giving up driving bjut i had to as i had a v bad car accident b4 diagnosed - car a write fof me ok ! so i realised i should not be dirivng and working out the alternative costs of taxis etc would eb cheaper

than keeping the car !=

lol jILll

[goldcap in reply to jillannf6]

jii, I know it is very difficult to give up your independence but good for you for being responsible-both financially and to other people on the road. Keep fighting the fight!

lol JG

[jillannf6 in reply to goldcap]

THANKS FOR YOUR REPLY GOLDCAP

I KNOW HO W DIFFICULT IE TS 4 MEN TO GIVE UP THEIR CARS-( MY DAD WAS STILL DRIVING UNTIL 90 YEARS SOLD AND I S NOW 92!)

HE WOULD NEV ER USE A TAXI AND RELIES ON SOMEONE TO GIVE HIM A LIFT

BUT

NO W WE HAVE A MOBILITY CAR AS I GET THE DLA (M IN THE UK)

SO IT IS NOT TOO BAD..

OL jiLL

[Sugardart]

I had to drive 30 miles to get her to doctor appointments. On the last few trips she would grab the door handle and open the door - not open much but just enough to scare me. I remember on two trips I ended up using her cap to tie one end to her sleeve and one end to me so that she was not able to reach for the door handle. If I had been pulled over by the police I can't imagine what they would have thought. And I would talk with her trying to explain how dangerous it was. And...within seconds she would be reaching for the handle again. My husband had brain stem stroke a year prior to these trips with mom to the doctor. He had significant difficulty in the car stating that there was far too much activity with his peripheral vision. The occupational therapist he worked with suggested glasses rigged up similar to horse blinders where there were fewer visual images of things rushing by. Although mom was on sinemet it was my husband who helped me realize that it was a visual issue and not temperament.

[Brighteyesxxx in reply to Sugardart]

When first diagnosed my mum had all her abilities , therefore she sat in the same backseat in my car she had always sat. As time moved on I felt she was safer in the front beside me where I could react quicker to mums needs and the safety of driving... Yes she did reach for the handle to open the door. However, I did not see this as something mum was trying to do ,from her not knowing what she was doing. Instead I felt it was her showing me that she was bored... If you think about the situation . I was driving. Storing nothing except taking each moment as it was presented to me. That being the safety of the road, but more important the safety of my beautiful passenger , my mum... It was then I decided to correct this worry... With no help from any so called qualified people I had a flash as to solve all these worries at once... At first I put pillows at mums sides so that she would not see the handles. eg out of sight out of mind... This worked for so long, then mum started to slide down to the right, As I am a right side seated driver this became a new hurdle on this PSP journey... Yes I called it a hurdle because it was just another obstacle for me and mum to get over... Well I sourced an idea I had to support mums seating position. Yes success I got ONE person who seemed to listen to me... I got a safety support that went across mums chest and around her seat so now she would slip nowhere... This was east to put on and god forbid if we had been in situation where mum had to be taken from the car quick , then this to would have been quick and safe and easy for any person assisting ... Well next hurdle, having long since passed the time when mum loved her picnic in the car, Which I might add was one of my first clues as to the fact that my mum was not well... Mum was now on purred diet and that put a stop to goodies on the go. ..

However mum always love dolls teddies , cute things and colours to look at. Yes I mean small things that sparked a good memory for mum , these items were on mums lap and within reach and so also in her eye level of concentration .. So the answer is Mum has been on Sinemet for a long time 8 years... I do not see that this is good or not so good for mum. But as I am not the person that put mum on this. I am not going to demand her to be taken off it... The hardest part of the car was getting mum in . As she had lost the ability to walk and even though she is sadly in a nursing home , there was never any help to bring my to the car and assist her getting in... So I used to give mum a cuddle and while doing this I would turn and sit her down on the sit, then put her feet in... Ok my own health has suffered , but hey my mum is worth much more... We cannot go in a car anymore so it has to be a wheelchair taxi... Do you know how GOOD it is to EXCAPE from the nursing home... 8 years ago I was told to book. Funeral for mum. In this time yes I have nearly lost mum but because I have intervened with my opinion and because of what I have seen that I consider to be incorrect... Guess what I still have my mum. Please god she will be 87 yes on the 21 April... Me however I am still fighting for my mum and anyone else who might gain from my voice... I don't find PSP the problem on this journey or mums other complaints, of which there are many... I do fine qualified people who stand in the way of myself or others who have got a degree in common sense, given to us by the very loved ones we are now having to watch sadly loose the abilities that they once learned from birth , very very upsetting ... Sorry this is so long but I have 8 yrs from diagnosis a photo store of mums life but also our memories , Love to all Valerie xxx

[goldcap in reply to Sugardart]

Sd, my god you poor women, you have had a lot on your plate the past few years. I commend you you for being so innovative with her. Don't think I could be that clever or tenacious. He has attempted to open the car door several times but it was after I said if he did not stop yelling and grabbing the steering wheel I was going to pull over and make him get out. (See what I mean about not coming up with something original He likes to wear dark wrap around sunglasses in the car and I thought it was just that his eyes have become more light sensitive. He has become very upset when he does not have the glasses and after having to go back several times for them I now keep them in the car. Thanks for sharing, it all makes more sense now. Jg.

[jimandsharynp]

Hi, Don't know about agitation and Sinemet but consider the long range effects. I've heard that long time usage of Sinemet can cause Dyskinesia (involuntary muscle movements). The kind of movements that Michael J Fox has if he doesn't take his meds. It is my understanding that once you have Dyskinesia induced from Sinemet it is not reversible (I'm going to verify that). My advice is if Sinemet is not helping get off it, but then I'm not a doctor. Check this out on the internet and with your doctor/neurologist. Here is a link to read.

en.wikipedia.org/wiki/Levod...

Jimbo

[jimandsharynp]

Sinemet requires that patients gradually increase dosage then if stopping it they do it gradually. Did your husband start at a low level then gradually increase?

Jimbo

[goldcap in reply to jimandsharynp]

JS you are right about the gradual increase/decrease. When he was misdiagnosed with Parkinson's, the doctor kept increasing the dosage to no avail. That was one of the clues is was not Parkinson's and Dr. #2 said MSA. Dr. #3 referred him to a Neurological Opthamologist who confirmed PSP. I really do not know why Dr. #4 (the movement disorder specialist) has put him back on it. It has not improved his balance issues and I feel (like I previously mentioned) it is exacerbating his tendency towards violent outbursts and agitation. I am going to address it the next office visit but ( to err on the side of caution) in the interim, I am not going to take him off of it and I promise, certainly not cold turkey! Interesting that you mentioned involuntary movements. He has a tendency when he start a movement (stirring his coffee) that he cannot control or stop it. I wonder if anyone else had experienced this?

[marytea13]

Hi

Gold cap Top of the morning to u! my response to Sinemet was to feel awful until I'd vomit - my neurologist put me on it in the hope it would help my walking - it did not help so they took me off it - I am better without it - maybe it is causing some up set - is there any evidence that it is doing some good? Cheers marytea