Hi I am a 37 yr old and was dxed with YOPD 2 years ago... I am on 1 x 1mg rasalagine a day and 4 x Stalevo 100mg per day 1 every 4 hrs,in the past 2 weeks I am struggling to walk around the house with me needing my partner having to assist me to the toilet etc.
Up until 2 weeks ago I could walk although I had a limp.
I definitely would struggle outside as my steps are laboured and small also my balance is off.
My right foot/leg goes so rigid I can't move it.
When my meds finally kick in after 30mins to an hour I have about 80% movement but then they wear off and I can't do anything till the next kicks in normally 2 hrs off which is driving me crazy because I am practically unable to function.
I know it sounds weird but I find that sometimes to get my right foot to work I have to lie in bed on my stomach concentrate and twirl my foot when I've had my meds, weird huh?
I know parkinson's is individual to everyone, but has anyone been in a similar boat? Where it's affected there walking?Can PD effect your ability to walk that quickly?
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stanny7
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Yes stanny7, I’ve had that same problem with my right leg/foot too. When my meds kick in, I , also, have about 80% movement, but when the meds wear off and I don’t have another pill handy, after an hour or so, my right leg gets very stiff, and my right foot drags. Just the other day that happened to me, after shopping. I started walking out to the car, in the parking lot, and my muscles were getting really stiff. It was embarrassing, because I had a terrible time bending and lifting my right leg to get into the car. I had to try about 5 times before I could do it. I also have to lie in bed or my recliner and exercise/twirl my foot to lessen the stiffness-get it to work well, too. Yes, PD has affected my ability to walk many times. I have a cane that helps. Also, I use a shopping cart at stores, and, occasionally, use a mobile chair-depending upon how stiff etc. I am. I certainly can relate well to the problems you have walking. You should have seen me at Universal Studios several years ago, before diagnosis and medicine. I had a terrible time walking and navigating that theme park!
You will find that if you concentrate on moving your legs and arms you will be able to walk properly. In the past you have been able to tell yourself to walk and it happens, without you having to think what your legs and arms are are doing.
Carry out a little test to illustrate this point. Stand upright with your feet, shoulder width apart. Then, with somebody holding one of your arms, put all your weight onto your left foot so that you are able to lift your right foot up in front of you, without falling over, with the knee held straight. See how far you are able to stick that right leg out in front of you. You will find that you are able to stick it out quite far.
Then, put all your weight on the right foot and lift your left leg up in front of you, with the knee held straight, and see how far you are able to stick that left leg out. No doubt it will be the same as the right leg.
If you were able to stick both legs out to at least 30 degrees, which is normal, you will ask yourself why don't you do that when you are walking. The answer is that when you do it subconsciously, it is not working properly and when you do it consciously, it works perfectly.
So all you have to do now is to consciously think about putting all your weight on one leg and think of moving that leg forward and landing on the heel of that foot, then doing the same with the other leg.
After getting used to doing that, with somebody holding your arm, for at least a week, you can then concentrate on holding the weight of your body on the ball of the grounded foot, so that when the other heel hits the ground, your body weight is being supported on that back foot.
Soon you will be walking, consciously, all the time, without having to concentrate too hard.
Look at my profile and make contact with me to find out more about ways of dealing with your Pd.
Thanks John for your videos and info. They are very interesting and refresh my mind of what you showed/told.
Hi community, John is a very kind man who always gives time to us to share his experience and show us how to improve.
I feel he has the same intention like all of us to want everybody to improve and fight PD. He doesn't make money from this. I've been to his talk and just cost a very small donation.
The donations received during my recent trip to the USA, Switzerland, Italy and Israel did not even cover the airfare getting to Europe, let alone all the accommodation and the rest of the travel costs. I did not even ask for donations this last time, as it may have prevented some Pd patients from coming to the talks.
Just meeting so many incredibly interesting people and helping lots of Pd patients to walk properly has made the past 3 years of talks the highlight of my life. However, I am no longer in the position to carry on doing these talks, and at the age of 83, I no longer feel able to even travel anymore.
I will continue, for as long as possible, to respond to all the emails I get and to take part in the HU forum. My aim is to make, as many people as possible, aware of the FACT that there is a lot we can ALL do to deal with many of the symptoms of Pd.
The fact that the medical profession, generally, do not agree with what I do, does not detract from the fact that so many Pd patients are now walking better and FEELING BETTER is witness to the truth of what I have been saying for the past 15 years.
I hope that somebody else will one day carry on, where I have left off. I know that what I have been telling people over the past 15 years is not popular with the drug industry and many other people with vested interests. But I am not interested in them, although I don't blame them for trying to stop me from achieving my goal. I have not done all this for profit. Nor do I continue to work for any other reason than to have the pleasure of sharing my good fortune with as many other people as possible.
I am not giving up yet, but it is getting more difficult to continue the fight!
As an occupational therapist that has spent the last 20 years assisting people in healing and recovery, the absolute most important element that brings about significant change is making the choice to heal and the EFFORT put in. No other way around it. Mindset really does affect your progress. I remind the parents of the children I work with that their children may have a disability, but that does NOT need to mean they are handicapped. I have seen amazing things happen when sheer determination has been actively present. I am 100% behind your support of people helping themselves, changing their mindset from handicapped/diseased to empowerment, and moving their body mindfully. There is no easy cure, but there are options to empower yourself. Thank you for supporting a non-medical approach to healing and for all your efforts. My regret is that I have not witnessed your workshop in person! One way to heal yourself is to focus your energy on others. That sir, is what you have done and I know you have reaped the health benefits (mind, body and soul) of your generous efforts. I hope you continue to feel the gratitude of others....even if you no longer hear it. My heart will always be grateful to you. Every mindful step I take whispers your name.
I feel we are missing out on not having you do the talks and show people "onsite" how to walk. It looks simple but having you there to show in person and taking us walking makes it even better/working.
Your dedication is deeply appreciated by me and I am sure to people who have seen you.
I shared your videos to my fellow exercise class and one of them told me he's been practicing it and it works. Videos are the best if we can't see you in person.
Yes, I have similar experience and more. I'm 37yrs old too, married to a lovely wife and we have 3 beautiful kids. I was diagnosed in November 2011, although the symptoms could be traced back to 2005. I was placed on 1½ tab sinemet 275mg daily. (Including 1parlodel 2.5mg and 1 tokovid 50mg.
However, my health condition has gotten worse each day and presently I take 1 sinemet 275mg every 1½ hours everyday, making a total of 16tabs of sinemet 275mg each day. I am at an advanced stage and I am thinking of getting a DBS asap. For now, I don't have money to go for d procedure. So I'm hoping and praying for assistance from anyone or anywhere to go for d procedure.
Now back to you. I suggest d following;
1. Talk to your Dr to increase/change your medication. Stalevo 100 contains only 100mg of levodopa which I feel may not b enough for you.
2. Exercise, Exercise, Exercise!!! This will definitely help.
3. Avoid/Reduce stress. (Especially emotional stress). Not good for PWP.
4. Take supplements. (Including Vitamin C)
5. Indulge in anything you love doing. (As long as it is legal, Godly and healthy)
6. Rest as much as you can afford.
7. Be willing to try out any suggestions, (as long as it doesn't involve drugs), like that of John Pepper. It could help.
Always bear in mind that in this battle against Parkinson's, you are not alone.
We shall continue to explore and exploit all available means to hit back this miserable disease.
That's a lot of levodopa a day your on now did you just gradually need more?
I quite agree with you I need more levodopa and at closer times, because I'm having off periods of 2hrs so I just lie down until my next tab is due which sucks.
Did you ability to walk happen quite quickly like me in the space of a month?
Is both sides affected?
My left side does seem to be slowing down in the last few months.
And do you have a tremor?
I don't seem to have a tremor I am just affected by ridgety, stiffness, slowness.My
Yes, gradually my Dr increased increased my daily dose from ½ tab 3X daily to 4X then 6X. At a point, d ½ tab stopped working well and so he prescribed 1 tab 4X daily. Then to 1tab every 4 hrs=6tabs daily.
The rapid increase in my meds, walking issues and other conditions worsened over d last 2 years.
Other drugs have been prescribed over d years (like ropinirole, amantadine, and stalevo 200). But sinemet seems to work better for me.
Both sides are affected but my right side is affected more.
My tremors are mild and they come mostly when d drugs have worn out or I'm under immense pressure.
Thanks for the reply, I am guessing your walking is affected.
How fast was yours affected? Like in the space of months/weeks?
I've had a limp in my right foot for 2 years (when I was dxed) and could walk at a decent speed up until a month or 2 ago then slowly but surely it's come to a head where I can't hardly walk unless medicated. Just wondering is that normal.
Also I can't get in/out of bed without assistance... And can't turn over due to my leg being like a lump of concrete... Does that sound familiar to you?
I know I am asking alot of questions but you seem to be on the same path as me.
The walking issue has me really shook... As I didn't think it would progress that quickly.
No you are not asking too much. I'm glad to be of any assistance, no matter how little it may be.
Like I said earlier, the PD symptoms increased rapidly over d last 2years.
My walking is affected. I can't do anything when I'm off meds. I'll completely shut down physically and I'll become an emotional wreck. I can only stay of meds when I'm heavily sedated.
So for me taking d meds b4 I can get anything done is for now normal.
I remember having this reaction when i was on Mirapex. So perhaps it is med related. Over time I have had issues with walking. I am 44 yrs and have been diagnose since 33yrs. I went from noticible limping (frustrating!) to no noticicble limp at all. One of the simplesest things that have helped is going to a foot doctor and get a good set of orthotics.
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Walking Problems
crazy meds
I don't have a tremor. My symptoms are all movement related and I have
Sinemet reactions 
Shortness of breathe,v iolet shaking,heart actually jumpin g,
