Unable to move.

[stanny7]

In the morning I am practically unable to move until my meds kick in... is this a common thing? I also have Off periods through the day.

Like I cant get off the bed without assistance, can't get out a chair.

[stanny7]

Like when my meds are on I can stand up from the bed nps without my hands... When off I can't move and my partner has to help me up.

[honeycombe3]

Hi stanny7,

This is one of the most common features of PD. It is always helpful when a question is being addressed if the poster could give some basic info such as age, gender , length of time diagnosed(dxd), drugs taken, country in which they live etc

I am a 69 year old female, dxd 13 years. Like many PwPs I have experienced the 'off' time before the meds kick in at the start of the day. Some common strategies for managing this include giving your system a boost by taking Madopar which is soluble & gets into the blood quickly; waking earlier & taking Sinemet &/or Ropinirole (Requip) so that it has time to start working or doing an exercise program to get the body working, raising the feelgood Dopamine.

[stanny7 in reply to honeycombe3]

Hi thanks for the reply I am still very young aged 37 dxed 2 year ago I live in the UK ... I take Stalevo 100 x 4 a day, SInemet CR 100 at bedtime and Madopar Dispersable 62.5 up to twice a day when needed.

I have been ok with progression up until 3 months ago where I have noticed slow down and lack of movement what feels like I am weak.

It started with Dystonia in my right hand.

[Andreajohnson in reply to stanny7]

Hi Stanny 7 I'm in uk too diagnosed 49 now 56 I get this I often think god if there was a fire in the middle of the night god help me. I take my meds which sometimes don't kickstart me then I go to ride my horses best feeling in the worlds when I'm riding I'm normal again. Exercise as much as you can it really helps xxxx

[honeycombe3 in reply to stanny7]

stanny7,

I see you have weakness. This is also one of the symptoms which I have & have had. My consultant, who is a gerontologist, is not always bang up to date with advances in treatments but he comes up with ideas which have worked for people like me in the past. One of these was to try Disipal (Orphenadrine) which worked well for me for over 3 years until some side effects caused me to stop.

I now inject Apomorphine subcutaneously (ApoGo) which is another agonist like Requip. I am about to try the same drug using a pump so I won't look like a pin cushion.

Just one more piece of advice: if you want state of the art treatments, the chance to meet with those experts at the cutting edge & a warm glow from helping yourself & others then see if there are any trials in your area & express an interest.

[Jlloy5 in reply to stanny7]

I'm 44, live in the U.S., Dx @35, and I was having the exact same problem, worse in the morning and continued throughout the day or until I took Sinemet. My Nero put me on the Neupro patch, and it has made a big difference. Prior to the patch, I couldn't even roll over in bed much less get comfortable. Couldn't wash my hair, and had a lot of difficulty pulling up my pants and getting dressed. I can do all of these tasks without assistance now. I have reduced my sinemet to half the day, mainly because I experience a great deal of dyskinesia with it.

[stanny7 in reply to Jlloy5]

Thanks for your reply Jlloy5.

It does seem very similar to me when I am on I can do most things with ease, but when it comes to off time,mornings I can't even wipe my own bum!

I am also struggling to sleep because it feels although I can't move my body in bed it's a strange feeling.

Problem is I don't see my Neuro till May next year as I was progressing slowly then this has happened... My local GP has wrote a letter to them asking to be seen sooner.

Not sure where to turn because everyday is a struggle.

[Jlloy5 in reply to stanny7]

I understand the struggle for real. See if your neurologist has a nurse practitioner. I actually like the nurse better than my dr. Hang in there, things will get better. Before Neupro I could only drive when the sinemet was working well. The Neupro is a 24 hour patch. There is no on/off and what you eat doesn't affect anything. I can now wipe my bum with or without sinemet.

[NancyJHP]

I'm the same. I don't take any medication though. My domestic partner gets me out of bed and I'm like death warmed over and stiff as a corpse. By the time I get to work I'm much better, but once I sit for a while, I stiffen up again.

[Serenity_finaly-1]

I call it thawing. Feel free to use that term maybe we can get it to stick.

[Bridielena]

Same here. My days start about 3.00 am when I wake and simply have to leave the bed as have lower back pain and shoulder pain which add to the PD symptoms of feeling trapped. There’s no going back to bed for me. A very real struggle then to get moving . I latch onto my walking frame and just ‘will’ myself into getting to my next bolt hole....my Birman Kitten thinks it’s play time and jumps up onto the seat for a ride.....she brings a smile to my face but play is out. Fall into chair with a huge sigh of relief. I wait until 5/6 am before starting Meds but am thinking, only decided today, that I will take them as soon as I wake up. I.e. 3.00 am.

How will this journey end.? I have been on Exenatide for a week now.....second injection tomorrow....first few days were wonderful in that my ‘on’ time was greatly increased however symptoms have deteriorated to. the usual struggle.....I’m expecting positive symptoms again from tomorrow and aware the outcome I want is a long way off but I will make it.