90% paralysed from the waist down when OFF the influence of L-Dopa. Does anyone share these symptoms ?

[9Rafiki9]

While getting up in the morning, with virtually no L-Dopa “coverage” I’m practically incapable of walking the 3 meters that separates the bed from the bathroom. The legs will simply not obey. Also during the day, if I fail to take my next dose in time, within minutes my forward motion is almost impossible, even using walking sticks. The solution is to wait 45 to 60 mins for the L-Dopa (Stalevo 125mg 6 X/day) to kick-in and here I go, walking perfectly well. On a good day I walk 4km in 40mins.

Physically fit 65 yrs old male, diagnosed with non-tremor PD 5 years ago - and getting seriously worried!

[Cons10s]

Meditation has really been a game changer for me with regards to movement. It takes time but the results come. Recommend you check out Dr. Joe Dispenza.

[9Rafiki9 in reply to Cons10s]

Thanks for the recommendation, I do use joe's material, but I don't practice meditation as often as I should, I guess.

[hanifag in reply to Cons10s]

Send site

[9Rafiki9 in reply to hanifag]

drjoedispenza.com/collections

[parkie13]

Till I started B1 I could not move in bed. Real problem was trying to pull my pants up, that kind of an upward motion was almost impossible. I also take my C/L cr more often.

[9Rafiki9 in reply to parkie13]

Thanks, I have tried the B1 therapy but so far without benefits. Might have an other go.

[park_bear in reply to 9Rafiki9]

It takes 3 to 4 months for most benefits to manifest.

[9Rafiki9 in reply to park_bear]

Yes I'm aware, I'll start again next week ... and be more patient !

[OREOLU]

Hi, I read an article somewhere online which says something about consuming too much protein the previous night and not getting enough sleep during same night, then in morning you are left with very little dopamine being produced by the brain, also the fact that you did not take your stalevo in the middle of the night. Are you thinking about DBS? Because in order to prevent what you called paralysis, that might mean a readjustment of meds, so you call your doctor.

[9Rafiki9 in reply to OREOLU]

You're right about the protein interfering with the L-Dopa, which means I am already controlling my protein intake. Thanks for your suggestion.

[Ccihelka]

Yes. I use a walker to get to the bathroom until my l-dopa kicks in in the morning. Rytary, my l-dopa, takes two hours to kick in then. 63-years old female, diagnosed about 6 yrs ago

[9Rafiki9 in reply to Ccihelka]

I'm sorry to hear that your L-dopa takes as much as 2 hours to kick-in, have you tried using faster reaction drugs like dissolvable Medopar ? Yes the walker helps but only up to a point. Take care and thanks for your input.

[Buckholt]

Are you not talking about “wearing off”? I think this is a normal response after using levodopa for a few years, where you develop marked peaks and troughs in movement. Before I started medication I thought I was 7 out of 10 all the time, now I’m 9 when on and 5 when off.

[9Rafiki9 in reply to Buckholt]

Yes you're right, we are talking about wearing off , but the reason of my post/question, was to find out if there many of our friends who go from 9/10 to 1/10 in a few mins in connection with walking.

[johntPM]

9Rafiki9,

You know that levodopa gives you considerable relief from the symptoms of PD. So it seems worth seeing how to adjust your levodopa regimen to get the most out of it. PD is a progressive disease, so you will need to increase the daily dose as time goes by. (Eventually the total daily dose will reach a plateau.) So, I would discuss with your doctor an increase in your medication. Three points to consider:

- if you take too much levodopa you can get dyskinesia, if this happens, things get tricky, you will need to assess whether problems walking or the dyskinesia is more debilitating;

- 100 mg Stalevo is worth approximately 133 mg Sinemet;

- Stalevo has a half-life of approximately 2 hours. So taking some at night may still give limited relief in the morning. Alternatively, an agonist such as ropinirole CR may work. It has a half life of about 6 hours. (But there is a higher chance of compulsive behaviour).

John

[9Rafiki9 in reply to johntPM]

Many thanks for your explanation John : Luckily I'm still not bothered by dyskinesia.

Re Stalevo which I have started 6months ago, I'm still wondering if I was not better off using the good old Sinemet at comparable doses, seemed to deliver longer half-life. But the doc, says Stalevo is the best L-Dopa delivery combination (as long as your insurance agreed to pay the extra cost)But you gave me a very idea, since I have been prescribed Ropinerol ( 2 X 4md/day) which I take in the morning, I will suggest my doc to take the CR version at night instead of the morning. Thanks again, keep well,

Gerard (Brasilia)

[MarionP]

Do you have access to the continuous release forms or the extended release forms? Is it worth it to take those when you are up in the early a.m. or before you normally get up to start you off or to overlap into your first dose of continuous release?

[park_bear in reply to MarionP]

Stalevo is already longer lasting than Sinimet CR, see chart at this link:

parkinsons-therapeutics.org...

It looks like the only formulation that is longer lasting would be Rytary.

[MarionP in reply to park_bear]

Higher dose then?

Just wait longer for the morning dose to kick in rather than stressing over it or trying to move sooner than the body will allow?

I take more time to make mine start responding the older I get, and have found that adjusting my expectations a bit and being patient, it helps some. Actually helps rather a decent amount. But as to a medication solution, so far, no change in medication has changed that curve in me. But I've never used Rytary (as things get worse, that may change) so I don't say I know from my own personal case, and I've nothing else to draw on today.

[9Rafiki9 in reply to park_bear]

Thanks for the link/comparison info, I will read the full version. Is it not amazing that my (our) neurologists rarely seem to supply you with such crucial data which explains the reasoning behind his choice of meds !

[bornsmiling]

Here's a professional dancer with PD who has some interesting ideas about improvement of walking.

pdonthemove.com/node/82

[9Rafiki9 in reply to bornsmiling]

Brilliant, thanks so much for your contribution, I will start using a ball tomorrow morning ... Best, Gerard

[gginto]

I take Curcumin, a good quality Omega 3 Fish oil, Coconut oil, wheatgrass..and other good supplements. I also bike 40 mins/day , stretch, and do some weight training daily- no exceptions. Also QiGong is supposed to be amazing against pd... I'm definitely going to do it.. and yes meditation...I'm not going to rely solely on LevoDopa! I believe to control/manage pd, u got to do many things for the body, and mind.. keep moving..and put good gasoline in the tank... Hope this helps.

[9Rafiki9 in reply to gginto]

You're absolutely right you need to keep moving ... am also taking about the same supplements, tried QiGong last year and will try and start again soon. Happy Xmas