I need help

[Ramona Mullan]

This is my first visit to the site so i hope i don't post everything in the wrong place but if i do please forgive my ignorance. My mum was diagnosed with PD in August 2007 and since then her condition has worsened rapidly. She has tried 4 different types of medication to date but as yet none have had any positive effect. She has just recently commenced sinemet and is currently on 125mg 3 times a day to be increased gradually. The problem is since starting this particular one she has become much more unsteady on her feet with her foot sticking to floor more than usual and her speech has suddenly become abit slurred. She is now at a point where she feels like quitting all the medication as her initial symptons were quite mild. I am trying to stay positive for her but I am despairing at the minute. I really thought things would have settled down for her before now. Is it normal for it to take so long to find a treatment that works? Are we being impatient? Should my mum stop her meds?? :confused:

[heather]

Hi Welcome Ramona
Don't worry where you post someone will find you
I'm Heather,and care for my hubby Jim, who has a illness that mimics PD, and medication doesn't work
Each person With PD is so different, and what works for one doesn't always work for others, and takes a lot of time and patients. Please try and stay positive, and most of all stress free, as stress is the main fuel that PD survives on. ask mum not to give upon medication,
If you go to the top of this page and click on "Parkinsons Disease Forum "
It will take you to the main page, you will see lot's of headings
Click on the Medication and treatment, and above that General questions on Parkinson and you will find lot's in there on medication and how people with PD cope with Medication, as i said i am a carer, and not experienced to advice you on medication , but There are so many on hear who are, and want to help , and will get back to you
Take care, look forward to talking soon

[Diane]

Hi, Ramona. I am a carer, too. My husband was diagnosed with PD in 1999. I read all I could find, but it wasn't until I found this forum that I finally felt I could get real answers, not just vague notions of what might be going on. It is true that PD is different for everyone. My husband's first med was sinemet, and he did not get any more meds for several years, then dr. added Mirapex, which works with the Sinemet and makes the effect better and last longer. Now, the dr. has added more doses of both, so the meds don't wear off so much. He also added something called Parcopa, which I call the "instant pill". It works quickly, so he can move while waiting for the sinemet and mirapex to kick in. I hope your Mom can stick with it and get the combination right for her, so she can get some quality of life back.

Welcome to the forum. You might have to look in lots of places on here, but there is so much good information here. It is worth the time it takes to find what you want.

Diane

[ltd-addition]

Hello pet , I feel like Captain Manwaring off Dad's Army when i say "Don't Panic Don't panic"

I'm a young spring Gazelle living in the North East of UK, I've got Parker's and its classed as young onset since I was diagnosed under 40yrs old.

Medication can take up to 6 months to settle & If your Mam isn't happy whilst being monitored by her consultant then the medication can be added too or changed. It's mind over matter & since there isn't a lot known about the brain it is trial & error.

Some medications need time out on there own! like they react badly when traces of other drugs are still in the system

However I suspect that Your Mam may have an infection which will knock her parker's off balance, no matter what medication she is taking. Taking antibiotics can & generally have the same effect as the infection but you must consider that antibiotics are generally taken for a week to complete the course.
I know you may meet resistance if no signs of infection are found but just consider "what does she have to lose" a further week of misery whilst taking the antibiotics and a opportunity to feel human again ?

Try it and see
You are all in my prayers to remain calm through this difficult time. Keep us informed of any progress

[Drew Saunders]

Hi from England
When I was first disagnosed my GP put me on a high dosage of sinemet. Having subsequently seen my neurologist consultant my dosage was reduced to less that half. I was more able to cope - I am going back some years now - and now take other medication which enhances my toleration of my symtoms. Just for the record I take 9 sinemet 62.5 per day at 2 hour intervals and 1mg Azelect once per day plus diazapm up to 3 times per day as required. Every day is different and therefore due to trial and error I have found a happy medium to get me through the day. The problem with PD is that everyone is different threfore it is a matter of experminitation to get it right. Don't give up - you will get there - just give it time,
Regards
Drew

[Drew Saunders]

This is my first visit to the site so i hope i don't post everything in the wrong place but if i do please forgive my ignorance. My mum was diagnosed with PD in August 2007 and since then her condition has worsened rapidly. She has tried 4 different types of medication to date but as yet none have had any positive effect. She has just recently commenced sinemet and is currently on 125mg 3 times a day to be increased gradually. The problem is since starting this particular one she has become much more unsteady on her feet with her foot sticking to floor more than usual and her speech has suddenly become abit slurred. She is now at a point where she feels like quitting all the medication as her initial symptons were quite mild. I am trying to stay positive for her but I am despairing at the minute. I really thought things would have settled down for her before now. Is it normal for it to take so long to find a treatment that works? Are we being impatient? Should my mum stop her meds?? :confused:

Hi Romona, I have just re-read above and it got me thinking. Please bear in mind that I am not an expert just someone who has PD but it seems to me that you Mum has been put on quite a large dosage very early. May I suggest that you try half the dosage six times a day. If the affects are adverse you can always go back to what has been prescribed. The problem is that consultants/doctors are to a degree guessing what is required because of everyone being different. I may be repeating myself here but I take sinemet 62.5 (lowest dosage) x 9 per day. Because I was starting to tremor before my next pill was due I was given Azelect 1mg to try and it works for ME. When I told the consultant he said that 50% of his patients got on well with that but of course 50% didn't. Back to trial and error. I also take diazepam 2mg when required. Diazepam has two main advantages. 1. Calms down panic/anxiety attacks and 2. is a muscle relaxent. You could suggest this to your doctor but be careful - some medical people do not like patients/carers suggesting things to them. Some doctors are reluctant to give out diazepam because they say it is habit forming, well for the record so is sinemet! I am NOT suggesting that I know more than the doctors - I'm not that big headed or stupid but knowledge is power to try and control this nasty disease.
Good luck and hope you are both having the best day that you can
Drew