I did post this earlier so apologies if this is my second post. I was diagnosed in January 2019 and I am 47. Was told by a neurologist after a 20 minute consultation and was the least expected diagnosis as I thought it was either a shoulder injury or essential tremor. I have a wife and a youngish family (11&13). I am currently on ropininerol 12mg and co-beneldopa 25mg each day. My symptoms are stiffness in left hand and trenour in left hand. Fairly mild if I’m honest compared to videos and information I have looked at.
Any advice for the following three issues would be greatly appreciated;
Sleep - Two weeks after my diagnosis I started having very poor sleep. I get and average of 2-3 hours per night and it is interrupted sleep not straight through. I wake up anytime after midnight and although I have tried many methods can’t get back to sleep. I am a teacher and although it is affecting my job which I love it has had an impact over the past 7 months. One of these is driving. I have about a 45-50 minute drive to work each day and both going and returning I feel very very sleepy. So much so that I often pull over and have a sleep for 10-60 minutes. I have had counselling which hasn’t worked. Been umpteen times to my GP who doesn’t seem to know what to do. Since being on holiday it has improved slightly as I am able to sleep in the day. Anyone else experienced this or something similar please let me know how I can I can beat this.
Swallowing - when I am in bed I often get a build up of mucus as I seem to have a permanent cough ( I have seen my gp several times had scans that have come back clean) they say it’s viral and will eventually go away. Anyway the problem is I often wake up choking on this build up. So much so that I sometimes vomit but most of the time just have trouble swallowing or stopping the urge to swallow.
music - I play in two bands as a lead guitarist and play regularly. I have noticed a slowdown and a lack of ability to stretch recently as if I am wearing a thick glove. Is there anything else I should be doing for this. I’m guessing it’s inevitable that I will eventually have to stop my beloved playing which in all this is one of the things that most scares me.
Can increases in doses of my medication help with this in anyone’s experience?
Sorry for the long post but any help at all would be hugely appreciated.
Welcome to the forum. You can find lots of information and advice on Sleep on our website, here: https://www.parkinsons.org.uk/information-and-support/sleep-and-parkinsons
We also have useful information on eating and swallowing: https://www.parkinsons.org.uk/information-and-support/eating-swallowing-and-saliva-control
You might also like to try contacting our Helpline, who can offer advice and support on a wide range of issues affecting Parkinson’s patients. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.
Hope this helps.
For swallowing, you might try Nexium which is used for reflux. I didn’t think I had much reflux but Nexium has helped my buildup in the throat over night.
I don’t play any musical instruments but I was having a lot of trouble with the computer keyboard. Getting the correct dose of medication helped a lot. Medication has also helped with the sluggishness which you seem to be describing.
The one thing that can help is exercises. There are some designed for hand movement but any of the PD Warrior style exercise should help.
Thanks Jim. I have heard of PD Warrior.My physio recommended it not long after I was diagnosed but I was still in a bit of shock and the class happened in a different area from where I lived. Excuses really. I used to be very fit. Number of years a go but I’ve found it harder and harder in recent years to get back into something. I don’t really enjoy gym style repetitive excessive and am more of a team sports player especially football. For the music thing the actual act of playing for a length of time seems to help so it’s usually when I’ve not played i get stiffer.
Hello,I was on Co-beneldopar from Nov 2018 till Feb this year,I had the same sleeplessness as your getting,and the neurologist took me off of all my PD meds in February,and I’m still having problems because of the stupid Co-beneldopar,but I 've had a DATT scan and it came back saying I do not have PD ,but I’m on the lower end of being normal,so I just might get PD in a year or two,hope your sleeping gets better,mine did once I came off of the Co- beneldopar,bye.
Thanks for posting. Not sure what a DDAT scan is I’ll look into it. I have got some great advice and this is no less. At this point I’ll try and do almost anything to get something like normal sleep again. I’m on my holsbat the minute and I plan to speak to my PD nurse when I get back in Tuesday.
The irony is that I was put on the beneldopar because of my sleep problems!
Maybe my arthritic finger getting the wrong letter so I typed a DD,that’s what bent fingers do bye.
Hello,Wag here again,I get the mucus thing,one doctor told me to get a Nielmed System,look on the web at neilmed.com,and it tells you all about it,bye.p,s it works.
Not on it any more,been misdiagnosed,and discharged from the pd clinic.
Just for information, as it might help other with sleep issues:
After a long period of changing medications, going to a sleep clinic and trying virtually everything I could think of I’ve just had my first full week of sleep. I have had an average of 7-7.5 hours per night which is a drastic change as my average was 2-3 hours for the past year!
I have increased Madopar from slow release Madopar 125mg per day to 3x 62.5 mg per day but importantly have reduced Ropinirol from 12mg daily to 4mg. For two weeks I reduced to 6mg (as you have to gradually reduce) but this didn’t seem to have an effect. It was only last week going down a further 2gm to 4mg tablets did I see a change. Next saturday I am supposed to be reducing further down to 2mg per day but I am thinking of ringing up my nurse as I have a secondary issue (stiffness in left hand is basically stopping me playing guitar) which is also affecting me greatly.
I know everyone is different but I thought if it helps just one person through the sleepless hell I’ve been through the past year I would be very happy to post. Well one down one to go!
Still getting sleep 10 days on. Another issue I had playing my guitar has started to drastically improve since I have been upping the dose of Madopar. It just took a while for the medication to fully work in my system.