Has anyone worn a PD monitor?


#1

I have been having problems with "wearing off" and getting lots of pain and head pressure also more trembly. My nurse does not want to give me more Madopar i take 600mg a day plus 10mg Requip XL in the evening.  She tried me on Azilect and i felt very poorly and is reluctant to try me on anything else at the moment. I have an appointment to see the Consultant in May and as they are so busy it cannot be brought forward. Yesterday i spoke to the nurse who has suggested that i take my usual meds but spread them out over the day, instead of 4 hourly, to try 3 hourly. Also she is going to ask the consultant if she will refer me to our Neurology Hospital with view to having a monitor fitted for a week, which will record what is going on in my body and hopefully they will then have more idea as to what meds to give me. She does not think that all of my symptoms are due to the PD, though it seems odd to me that i only feel this bad when the meds are wearing off! Has anyone on here been referred for a monitor? and if so did it help?

Thanks so much

Dolly


#2

 

Hi Dolly,you mentioned this in an earlier post to me, I've never heard of one of these monitors, would be interesting to know what they are like and how they actually work and if they are any help. Let me know when you have that one fitted for a week see how you respond. Hope they get to the bottom of things for your sake, take care -  Sheila x


#3

Hi Dollymaz.Sorry, can't   answer nowt about a monitor. What does it monitor??

However..............

OH is, and has been for a long time, on 125mg Madopar 6 times a day, (750mg), every two and a half hours, whiilst before he was on 250mg of  Madopar, 3 times a day. The wearing off became troublesome so the neurologist suggested the same   dose at more frequent intervals. It worked for us for a long time but we may need to adjust yet again now;  only to be expected after 18 years.

He is also in the process of reducing Requip XL to nothing.  Presently on 8mg /day as opposed to 12mg/day this time last year. Better than the 24 mg of Requip that he was put in within 18 months of   diagnosis by a nuerologist who knew no better; neither did we at that time 18 years ago!

Spreading your daily dose at more frequent intervals, whilst NOT increasing the  daily dose, seems like a good idea until you can see your consultant. I would give it a try and then one more piece of evidence, good or bad effects, when you see them.


#4

Hi Dolly,

I thought the monitor was still being trialled and not yet available for the general public?

600mg of levodopa/ per 24 hrs  is not excessive, depends, of course, on  several factors. No-one should increase the amount they take unnecessarily . They will regret it later.  Spreading it out (change your timings) is always a good thing to do before increasing dose. Another change could be adding Entacapone to your drugs. I take levodopa  about every 2 - 2,5 hours.during day. My total levodopa intake is about 800 mg/day plus 200 mg CR levodopa during night. There is no recognised limit, some people tolerate higher doses than others. The appearance of dyskinesias  is usually an clear indication you are over your limit.

What I do not understand is, that the nurse cannot contact the neurologist and ask what the next step is, namely: increase in existing regime or adding another drug? Waiting for your May appointment ; that could be 3 months of unnecessary suffering..I have had changes to medication suggested by consultant to the neurology nurse, without him seeing me .


#5

Hi Dollymaz,

What a splendid idea about a PD monitor. They say great minds think alike, I was thinking of a Dopamine level monitor. Such a device would I'm sure be a blessing as getting Madopar (Cobeneldopa) level right is problematic to say the least. I'm on Madopar 187.5 or 125 every two and half to three hours. Sometimes symptoms tell me I've taken too much others, not enough.

Wouldn't it be great to have something that tells you when dopamine levels need a boost or need reducing. Getting the level right is a problem. Please researchers tell me this possible? Cobeneldopa is the only PD medicine I can get on with, none of the agonists (except the inbuilt one) suit me.

I've been making every effort to control my Facial Distonia, the Rotigotine patches made my symptoms far worse, particularly akynesia so I've dropped them

One of our forum contributors mentioned sudden relief from the symptoms. Just occasionally I get this and it's like being in heaven. Unfortunately it usually only lasts a couple of hours but why does it occur? If we knew why and could harness it, it could be life changing.

Regards to all,

Jules77.

 

 


#6

Hi all,

Unfortunately devices which can monitor dopamine levels do not currently exist and we are not aware of any research looking into developing one. However several devices and smart phone applications are being developed to help with the regular monitoring of symptoms. It is hoped that these digital monitors could notice subtle signs of when medication may be wearing off. This could help doctors to design medication regimes and allow people with Parkinson’s to better understand their condition and help plan daily life.

One example of this is the Parkinson’s Kinetigraph- this is a device worn on the wrist which doctors can use to better understand a patient’s movements over a longer period of time. You can find out more information on this here: www.globalkineticscorporation.com/

There is also a new research study underway to understand if health tracking via a smart phone app can help to improve the lives of people with and without Parkinson’s. You can find more information about this and how to get involved here: www.100forparkinsons.com/

Best Wishes,

The Research Team
 


#7

While we're waiting for the perfect test tool, we can monitor simple things like how many times in 30 seconds we can type q followed by p. I have written an app to do this.

http://www.parkinsonsmeasurement.org/toolBox/sideToSideTap.htm

If you do the test every 10 minutes throughout the period of a dose and graph the results, you can clearly see the impact of the drug and see the time where wearing off starts.

Our drug regimen, different drugs, different doses, different times between doses, leads to a complex graph of drug plasma levels over time. You can see from a graph of aggregated pharmacokinetic data where problems are are likely to occur: 

http://www.parkinsonsmeasurement.org/toolBox/pharmacokinetics.htm

John


#8

Hi All...I have received a letter today from my cosultant who has been in touch with a Parkinson nurse specialist at our Neurology hospital to run the PKG for me. She is not sure whether some of my symptoms are in fact due to "wearing off' and so she does not want to increase my meds if this is the case. I am happy to try this PKG and hopefully find out what is going on and adjust meds accordingly.

I will post again when i get the results.

meanwhile keeeeeeep smiling 

love Dolly x


#9

I think a short-term diary would help a lot and be more versatile than a gadget.  As part of my DBS assessment, I was asked to complete a diary over four days at half-hour intervals.  I could write when medication was taken, when food was eaten, when I felt like crap and other symptoms,  It could be extended to include the finger-tap test - oh, how I hate that test! - and heel tap test, Did I perform the test better or worse than the last time?

I think you would need some serious Star Trek technology to do the job properly with a gadget.

Peter. 


#10

I will let you know Peter.....i do also keep a diary but after being offered this and reading all the information i feel very lucky to be given the opportunity to try out what is relatively new in this country. www.globalkineticscorporation.com explains more.

You might be surprised.

Dolly

 


#11

Just to let you know that i have just received an appointment to see a Parkinson specialist at our Neurological hospital on April the 11th to have the PD monitor fitted (the website which gives all the info is in my message above) I am still just managing on my usual doses of meds which are now spread out through the day but this monitor will record my movement and wearing off and so it will give them a clearer understanding as to what is going on in my body every minute of the day. I will keep you informed as to the outcome......i feel very lucky to be given this opportunity.

 Dolly


#12

coolHello Dolly

                     I remember wearing a monitor the week before Ddopa instillation  but I cant remember what it was for I was having terrible dreams and palpatations I think it was to make sure I was fit for  Ddopa op, but reading your description of the pains you are having is identical to my own , I have described before methinks  of  how my brain has over time behaved  in a series of step downs, they were not  noticible very  much for the  first 2 or 3  years but they are now  I  will  go  along  for  a year  18  months in which time  I  will accept a  series of setbacks , increased pain  horror dreams and so  on and  I  deal with those , another period of  time will  pass  then another  step  down these  downward events  occur overnight  Dolly and  there is no upward step also the  period of  time between step downs is  now 6 months or so  and a very unpleasant increase in  pain instability memory nd failure {serious} obssessive behaviour and many  other nasties of equal seriousity and worryfullness,,sorry   I  just cant resist silly, I am in clinic next week and will talk about these step  downs and will inform of any relevant news.

                                                Kindest Regards             OTAN


#13

 

Hi Dolly - Hope everything records ok, will be good to know the results!

Good luck - Sheila


#14


Hi Sheffy and all....Well the PKG date logger monitor is on and will be for 6 days before i post it back. The Parkinson specialist told me that there are only 6 hospitals in Great Britain that fit these devices and she explained that they are very successful in recording movement whilst going about my every day activities. It is worn like a wristwatch, lightweight but slightly chunky,a bit like a divers watch!!!! She set the times that i take my Levadopa (Madopar) which is 5 times a day and it vibrates when the meds are due. The pills are taken and then i put my finger gently over a button that registers i have taken them. It shows the Doctor how my movement patterns change throughout the day and from day to day. It is worn 24 hours a day but must not get wet so must  be removed for bathing and showering (though Mr Dolly has been given the pleasure of washing up for the next week.....at least)!! It is only used to record Levadopa meds eg Madopar, Sinemet, Kinson  Stalevo etc. Any other meds prescribed by your doctor are taken as normal.She showed me some graphs and they are very detailed, paying particular attention to the times the meds are taken showing when they are working their best and also wearing off. Every movement is recorded in detail !! The results will be sent to my PD nurse at our local hospital and also to Melbourne Australia where the PKG was invented. It will then be  decided if meds need to be changed or adjusted. This is open to all ages and her youngest patient is 35, she has fitted lots of them and with great success. I will let you know when i get the results and what they say. 

Sheffy how is your new little Grandaughter? im sure you must be enjoying all the cuddles with her, and i guess lots of fun too. Hope you are doing well and enjoying the wonderful sunshine over  the last few days...roll on summer yay!!!!! catch up soon

luv Dolly x

 


#15

Hi OTAN...FED!!!! my mate....how are you doing now? what happened when you went to the clinic re the step downs? what did they say and did they  help you? I am so sorry that you suffer so much pain and anxiety, it just isn't fair, how do you manage to keep your sense of humour whilst suffering like you do? you are obviously made of strong steely determination. Good on yer , me ol rocker....like i've said before...you can't keep a good man down. Keeeeeeeeeeeeeep smiling my pal and Mr D and i send our bestest wishes to you.

Luv Dolly x


#16

 

Hi Dolly, was just thinking today about sending you a private message to see if you and hubby were ok because we hadn't heard from you, hope you are keeping well. That PKG monitor sounds like a great gadget hope it works in sorting your meds out.  I was prescribed a cheaper brand of my Ropinirole (cutting costs) and within two weeks I was feeling terrible, felt as if I had taken two steps back in my progress with parkinsons, I soon got the GP to put me back on my original brand, and the difference is so unbelieveable!! I am now back to 'normal' (if there is a normal with parkinsons) Hey, let me know if you become famous in Ozzy land!

My grand-daughter is gorgeous, she is six weeks old today and she has beautiful smiles already for me and tries to 'talk' to me, she holds her head up strongly too, I am absolutely fascinated by her.

Take care - Sheila xx


#17


G'd day Sheila......sorry Sheffy...i got carried away with the Aussie bit. Well the monitor was posted back to the hospital today and i must say it wasn't a problem wearing it at all, in fact i cleaned out our  fish tank with one hand so as not to get it wet (though i guess i could have just taken it off for a while) haha!! andi painted a couple of small tables and managed to only splatter it a little bit! so all in all pretty good. I got used to it vibrating every time my meds were due, though it did have the appearance that i had been a naughty gal and had been tagged! though they are worn on the ankle i believe ?!! I see the Nuerologist in May and will get the results.

Pleased to hear that you are feeling pretty good now after being put back on your normal Ropinerole, yep it does make a difference doesn't it? i remember being told when i was first dxs that i must always have the Requip XL and not a cheaper brand. I hate the idea of meds being altered but i know that when they get the results of the monitor that it is quite likely from what the Consultant said. I had to laugh when she mentioned that it records every movement i make!!!I told Mr D that he had better behave himself (well at least the 6 days anyway)! he will be thinking all his birthdays have come at once now its been posted back haha!

Lovely to hear that your little Grandgal is doing so well and that you are having lots of fun with her, she sounds really bonny bless her.

Keeeeeeeeeeeeep smiling always matey

luv Dolly x

 

 


#18

 

Hi Dolly -  just come back from Scotland after a short break, that monitor reminds me of when I had a BP monitor attached, that also recorded every movement you made, when I returned it to the GP she asked what had happened at 11.00pm that evening, because my blood pressure had jumped significantly, I replied "not what you think!" I told her the phone had rang and I jumped out of bed thinking it was my mother, who lives on her own, incase there was a problem - annoyingly it was a wrong number!!

Stay focused my friend - Sheila xx


#19

Hi Sheffy and all.....I can imagine what your GP was thinking Sheffy!!!! we certainly had some laughs when i was wearing mine.  Hope you had a great time in Scotland, i have never been though Mr Dolly was born in Edinburgh and left there when he was a baby, he has been back and says the scenery especially in the Highlands is breathtaking. What area did you visit?


THE PKG MONITOR RESULT

I saw my Consultant today for the result of the monitor, and she was very pleased with the result and says i am managing the PD well. She showed me the print out of the graph showing the 6 days that i was wearing it, and it showed a steady rate, no serious wearing off as i had imagined was happening. I had been feeling pretty rough since Feb on and off and felt sure it was down to the Parkinsons. I have thought for a long time that i suffer with Hypoglycemia and every so often i suddenly feel weak, faint, sweaty, hungry and spacey, i had a blood test 2 weeks ago and my Gp has asked me to go back to discuss the results. the consultant also asked me id i have ever had migrains....well for 30 years i suffered terrible ones every 2 weeks and she said that often Migrainous people have a tendency to react badly to noise,light, smells and certain foods. My weakness is as you know Sheffy is sugar! in any shape or form, chocs, cake, biscuits etc. So of course my own common sense should have told me that it wasn't doing me any good. She said that the pain and stiffness i get especially in the mornings is due to the Parky but not all the symptoms i  have been experiencing are. I guess we do tend to put everything we feel under one heading ....BLAME IT ON THE PARKINSONS as the song goes, but it seems that is not always the case. So to help me in the mornings she has given me a little extra Madopar in a dispersible tablet and then carry on with my usual meds taking them every 3 hours throughout the day. I am to try that for a month and to cut down considerably on my sugar intake and see how things go.

I am off to Shropshire this week for our Grandboys 21st Birthday and i am seeing  my GP to discuss the blood test results as soon as i get back, but meanwhile.......ECLAIRS, TRIFLES, CAKES, BISCUITS, CHOCS, SWEETS.........tata!! ......maybe i will lose a bit of weight tooooooo.....well it is now 10.45pm and i am so fancying something nice !!! so i had better go to bed and try and forget about it.

So night night 

luv Dolly x


#20

 

Hi Dolly - glad you are back on the forum, and reasonably well. I think you are right in saying everything gets blamed on the parkinsons! My sister in law suffers with migraines quiet bad and she has to avoid lots of food stuff especially chocolate - so beware, don't want to end up with diabetes as well. Hope your blood results turn out well.

Your hubby's right about the highlands of Scotland, some beautiful scenery to behold, we've been on a few coach tours now all over that area, worth a visit.

Take care Sheila xx