Standing on toes

Does anyone else stand on their toes? What causes that?

My husband has a tendency to stand on the toes of his left foot when he is doing something stationary. For example, when he washes dishes and cooks, he bends his left knee and rests his weight on his right leg & foot and the toes of his left foot. He has done this for a little while, but it seems to me he does it more often than he used to. It also seems his left leg is a little frozen when he does that, meaning there is a delay between when he intends to move and when his foot actually moves. His walk, gait, and other activities are pretty normal, i.e., he does not usually fall, drag his foot when he walks, or lose his balance.

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  • I'm not sure what causes it, but I sometimes will catch myself walking on my toes. I've heard of other PwP's doing that also, so I believe it's related to PD, but I'm not sure how.

  • Chalk it up to The Oddities of PD. That's a long list and getting longer all the time. He is very fortunate that his walking and balance are still intact. Something to be grateful for!

  • I absolutely am grateful, and I am in awe of him! He works hard at keeping his body and mind functioning well. He works out at the gym, rides a stationary bike, takes PT & OT, plays guitar, contacts his neurologist/movement specialist when things get a little out of wac, mows the lawn and helps me in the gardens, and a slew of other things. He has taken Tai Chi before, which helped a lot, reads profusely and does other activities that help his cognitive thought. That is why I was wondering about this one oddity. I am so impressed with him, and madly in love.

  • Wow! That is wonderful. Is he recently diagnosed and on meds? I was impressed with the cooking and doing the dishes, now I'm really impressed! I also think he is extremely lucky to have you. I try each day to be grateful for the small things, but I must admit it is hard sometimes to find them.

  • I answered my own question by reading your profile. That's great he's doing so well!

  • He was diagnosed in 2010, although we can trace symptoms back as far as 2004. Thankfully, he was able to retire in 2011, which helped tremendously. He is so much healthier than when he was working. I am sure it's that stress thing. I was surprised to see on your profile page that you are still able to work. Yes, my husband takes several meds that seem to be common among other people on this site, and they are titrated well at this time. I think feeling grateful and trying to keep a positive attitude are very beneficial. I wish you well.

  • I need to update my profile page. I retired 4 months ago. I still do gardening but it's for my mother and myself. Pain is one of my main symptoms and as you can imagine gardening for hours was not compatible with that. Thanks for the heads up on the profile.

  • You are welcome. I logged back in to update my profile, too. Great minds think alike. :-) I am sorry to hear you have such pain. I do understand how gardening can be difficult. It isn't like PD, but I have arthritis that causes me pain if I do too much of certain activities. I think it took my husband a good six months after retirement,, and a change in doctors, to show significant improvement in functions. Again, I wish you well.

  • Hi Pdwife. These symptoms are very difficult to understand without actually seeing the patient. I am not a doctor, just another Pd patient.

    I found, many years ago, that my posture was the cause of that problem. My upper body tended to lean forwards and my head tended to face the ground. In that position my weight would then have been very much on the toes of my feet. So in order to correct that I had to consciously stand upright and continue to do so all the time, consciously. It sounds like a hell of a problem, but I soon got used to it.

    There is something else I found out at that time. My shuffling was caused by the fact that the part of my brain that handles automatic movements, like walking, does not communicate properly with my feet and arms. I also found that I can 'consciously control those movements, but like the posture, I had to get used to walking 'consciously'.

    The good news is that after four years of being able to walk fast, by using my conscious brain to control that walking, most of my movement symptoms disappeared and for the past 14 years I have no longer needed to take any Pd medication and have not needed to visit my neurologist either. That does not mean that I am cured, because if I stop doing the fast walking, my Pd symptoms slowly return.

    The fast walking has helped me to stop needing blood pressure pills, which I had been taking for many years and also anti-depressant pills. In fact, at the age of 82, I am a very healthy person.

  • Thank you, John. I have read many of your previous posts, and you are quite encouraging. I've seen the symptoms of his upper body leaning forward and his head facing the ground. Thankfully, he has corrected most of that through PT/OT and consciously keeping good posture, as you suggested. One of the first symptoms I saw/heard (2010) was his shuffling down the hallway. That, too, has disappeared to a great degree. (He often still shuffles when he gets out of bed to go to the bathroom at night.) We are definitely on board with exercise, diet, and conscious thought, as well as regular therapy. It helps his mind, and as a result, his control over his body. He does still rely on medications, and it is obvious when they need to be adjusted. I see physical, emotional, and cognitive changes in him when something is out of balance. Nonetheless, he is so much healthier than when he was first diagnosed.

  • Hi Pdwife. I'm glad to hear all this, except the bit about having to adjust his medication. Sometimes the cognitive changes could be caused by the medication. Taking more would only make them worse, and if you think it is the Pd that is getting worse you could be making a big mistake.

    My experience is that when some of the symptoms appear to be better, like the walking etc, then you can experiment with reducing the levodopa medication a little and see what effect that has.

  • Thanks for your thoughts, John. I have not assumed that the PD is getting worse. He has been pretty stable for a couple of years now. Most real issues we have experienced have been induced by meds. He has been able to control most of the PD issues through exercise, therapy, and playing guitar. Keeping the stress level down also seems to help tremendously. We are very fortunate. Can't write more right now...my daughter and grandchildren need me this morning. Again, I appreciate you sharing your experiences, insights, and suggestions.

  • Thanks PDWife. Every day I learn more and more about Pd. Until somebody finds a cure, all we can do is learn from each other and get away from what does not work. It appears that most people agree that exercise does help to slow down the progression of Pd and in some cases even reverse the symptoms. That appears to be dependent upon the amount or type of exercise undertaken.

    My focus is on helping patients to believe that we can all learn to use our frontal lobe (Where we initiate everything) to control all the movements that they are no longer able to do automatically. It is difficult for people to understand that they can consciously move a leg out in front of them, but they freeze when they try to walk. This will only change when patients start to believe in themselves. When they get back the confidence they have lost! When they believe that they can do something they did not know before.

    Your husband has made changes and they waork. He has learned to control some of his symptoms. He is not just sitting back hoping that the medication will make him better. It won't!

  • A neurophysiotherapist recently gave my husband several exercises to address this problem. Apparently his " ankle strategy" was poor and this could lead to a reduced ability to correct himself when off balance.

    It might be worth seeing one of these specialists in the physio team.

  • I have been getting clicking in my right ankle (my weaker side) when I go up stairs. Is this due to poor ankle strategy? I've been meaning to look into it and figure out what's going on.

  • I can only suggest you get a physio review but by somebody who actually understands Parkinson's. I'm afraid I don't know enough about it.

  • My husband actively works with PT and OT therapists at least every six months, and the 6-week sessions are so helpful other people ask me if the doctor changed his meds. Neither he nor I have heard the phrase "ankle strategy". We'll ask about that. Thank you.

  • I do the same thing!!!!! I think it is dyskinesia. I also have issue with my toes curling into a fist in and out of shoes and it can be painful the doc says it dystonia both caused by too much levodopa

  • I have the same problem and I do not take levodopa. pain goes away when I walk most pain is when I am sleeping. pain wakes me up and goes away when I get out of bed my neuro.has no answer hope yours can suggest some sort of pain pill. recently started MANNITOL 4 GRAMS A DAY HOPING FOR THE BEST. look it up on the internet no side effects to worry about, KEEP ON TRUCKING

  • I just wanted to add my two cents---does your DH have any scoliosis or leg length inequality? I had spine surgery two years ago, apparently unrelated to myu PD, and as I have recuperated, scoliosis has become prominent. And I now have a significant leg length discrepancy, which makes me stand exactly as your dh does, especially late in the day, when I am standing at the sink or in the kitchen cooking. It will be fixed, I hope, with some wedges in my right shoe, which the podiatrist has prescribed.

  • No, he does not have scoliosis or leg length inequality. In general, he is very healthy and active. That is why this behavior peaked my interest. I hope the wedges help with your imbalance. Good luck.

  • I do exactly the same thing! At kitchen worksurafce, cleaning teeth etc. I think it is because Parkinson's symptoms are only on one side and the rigidity, foot and knee turning inwards etc has put pressure on one hip. My husband says my body seems twisted. I mentioned it to physiotherapist. She said I may well be right. Her suggestion is to use a perching stool when at the work surface for any length of time. I'm only 60 and don't feel ready in general for any type of aid, but I have an occupational therapist coming to see me next week to discuss. Let me know if you would like an update.

  • Sure, I would love to hear your OT therapist's analysis and suggestions. Thank you! My husband takes PT/OT every six months or so, and it helps him tremendously.

  • Hi PD wife, OT suggestion was to try the perching stool and see a podiatrist. Perching stool in the kitchen didn't work for me. I couldn't reach the work surface comfortably. Now waiting for podiatry appointment.

  • Hi everyone. Thank you so much for all your replies. I appreciate your knowledge and experiences immensely.

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