exercise is this good for PSP? CAN IT MAKE A DIFFERENCE?

I have been going to a class that is for Parkinson's people but I am very sore from stretch exercises & wondered if U should be doing them? I looked on a uTube/cure PSP site but found it unbelievable when a 'specialist' talked of PSP person being on treadmill!!I used to do that but can no longer. marytea13

41 Replies

  • Dear Marytea13

    Pre-PSP my husband, who is now in his 8th year of PSP, was a regular "hunting, shooting fishing " type of a guy all his life, he boxed, played football, quash, ran marathons, work out in the gym, he fair wore most of us out.

    Now, the very sad facts of this stage in his life is that the only exercise he can manage is walking around the apartment to get his blocked bowels working! Sorry to be so blunt but specialists of any kind are usually talking out of the back of their heads.

    So do what you can and if you can't, don't beat yourself up.

    Kind regards, take care

    Dorothy Thompson

    Ps sorry, what I should have said was "most specialists, when it comes to PSP etc etc.

  • hi Dorothy t hows it going mate well im sorry to hear that your husband can only manage a walk around to walk around your apartment please do not forget he will be as sorry as you are especially as he was such an outgoing person mate with all the things he used to do but I used to keep fairly fit myself I used to box for the army and the school and a boys club in my younger days and run my feet off for them as well but all the things ive done in my life I just say to myself been there done that which is all I can do now because I cannot do a lot of things that I used to I put it down to age though mate not psp === whose he kidding ==== well Dorothy t take care of yourself wont you have a great day mate peter jones queensland australia

    psp sufferer just a little extra for you the sun is shining its a terrific day

    and our granddaughter is coming for lunch with the great gran kids its great isn't it thanks for listening to me rant on and on

  • Thanks Dorothy I will do as u say! what I can do!

  • dorothyt, our guys are truly alike. This is weird to me: why is it that PSP seems to strike healthy, athletic men rather than your average coach potato?

  • hi marytea 13I think so I have been riding my exercise bike for a good few weeks now I always feel tired when I stop bit I come good soon after I mean I don't wanrt to run around the block or anything but I do feel better in myself I have 20 mins a day on it and also I go to balance classes once a week and have a good workout there but I must stress that there is always someone beside me just in case I start to fall which is very comforting but the lady said to me there I CANNOT CURE YOU BUT I WILL KEEP YOU GOING AS LONG AS I CAN which I thought was very nice of her at last I have found someone who is interested in my problem the same as my speech therapist I consider myself very lucky to have found them both

    ah well you can have a win sometimes and i am one of the fortunate ones who can still get about ---- for now so watch out MR C just in case you read this em


  • dear Peterjones

    well done, you are an inspiration and I hope you will continue to be as active for a long while yet.

    It is very sad but my husband just cannot do any of the things he did before.

    Up until early 2012 he still went to his gym, I will never know how he had the strength and commitment to make it. He gradually slowed down though in stages, beginning with me taking him to and from the station so that he could get to the gym, then collecting him from the gym.

    Finally he just had to give it up altogether when one day he tried to make his own way home on the tube. He felt and looked so poorly that he was not allowed into the station by the staff because they probably thought he was drunk. On that day there was a Big Issue seller outside the station, he looked after my husband, contacted me on my husband's mobile and got him into a taxi and he arrived home safely. Both the Big Issue seller and the cabbie looked after him. My husband, independent as ever, did not or probably could not, contact me. But all was well in the end.

    Take care and regards

    Dorothy T

  • Hi, Mr. Jones! Mr. C is getting over his cough and will be back in training today! He is really doing pretty well, considering. Spring is coming, and that will make us both livelier! All the best, EC

  • hi mrs c well im glad to hear that mr c is starting to come good I would not like to have an advantage over him by him not training ETC.. etc etc mate I shall polish up my bike wheels that should give me the edge I believe so take care mr c look after yourself i i'm counting on you to stay fit see yer peter jones queensland australia psp sufferer

  • Thanks Peter maybe I should get some equipment but I could go to our gym! marytea

  • hio mary t well mate if you can get out and go to the gym I would go mate you will see more people and interact with them there may come a time when you cant go anywhere I would not buy any equipment mate maybe 2nd hand stuff if you really want to get into it there is always someone selling something or other in gym equipment when thy get fed up with it or you could hire but I think that would work out a bit expensive for you depends on what you want really mary but even if you do exersices you will look like a million bucks what do they say tall trim and terrific remember my puter does not give me all the lette\rs I want

    so some\ of the spelling is a bit to be desired take care mary t 3 peter jones queensland Australia psp sufferer

  • Thanks Peter I will try to do gym ASAP! Mary

  • ok mary T good on yer mate but don't overdo it everything in moderation have a great day take care peterjones queensland Australia psp sufferer

  • PJ, is it a recumbent bike? I have been trying to get my guy interested in one. His therapist gets him up on a regular one on occasion but watches him like a hawk! For home I was thinking of investing in a recumbent one with a high back for support. They even make one with handles that go back and forth so you work your arms as well. He will still go to his classes and to the gym but I think the daily cardio will help with him pm,"crankies", and mine too!

    Keep up the good work, JG

    p.s. I have NOT been burning the big guys cobbler lately-knock on wood-HA!

  • I'm very interested in this question, because our doctor recommends exercise and I've been hoping to find a Parkinson's class for my guy. The visits to the physiotherapist have such temporary benefit, and insurance won't cover more. He does have an exercise bike, and we try to get in 20 minutes a day on it. When he does, he is definitely livelier and more chipper the rest of the day. I think it helps his balance. Does your class help with your balance?

  • yes eastern cedar its a matter of keep going I know marytea13

  • easterncedar, does the physical therapy practice offer classes? Ours does. I recently started a MMA kickboxing class and it has been so cathartic for me that when his PT practice advertised a Neuro-kickboxing class I talked him into going-reluctantly I might add-but he ended up really liking it. He is the only PSP person but he holds his own. I was amazed at how hard the class works. They do a lot of the same things we do in mine! They work on balance, stability and strength. Calling out the punches and kicks and right and left movements, working alternate sides of the body challenges the brain. Not to mention getting him to slow down his movements and focus. I had his PT trainer go to our gym and go over his routine. I am not a practicing trainer but I keep up my cec and certifications but he will not listen to me when I tell him to slow down and lighten the load on his weights. He has had several nasty falls in the gym. But the PT said it would behoove him to go as much as possible. So I take him everyday as he is not driving anymore. I used to drop him off so I could use the time to shop or whatnot but after the falls I stick around to make sure he does not get hurt. He has speech therapy one day, PT another, and kickboxing a third, and it seems like there is always a doctor appointment for something weekly, Sometimes it takes enormous effort to go back out in the afternoons after being in the car with him for morning appointments but I know how important it is to him. The PT also gave us exercises to do with Nordic poles together. Maybe you could find something you could do together to make it more fun? I have been wanting to go down to the beach path and rent recumbent bikes ( much more stable), but he is not into it. I love to rollerblade and bike at the beach but he has not had much interest and I have been hesitant to leave him alone these days because of his recurrent falls. We live in the mountains and our going to have to downsize and get a one level home and smaller property. (We have a lot of acreage here.) I am craving ocean and salt air but dreading the pack up and moving. I feel for you!

  • Kickboxing? Oh my! It looks like you've got a heavy schedule of activity going. I can't imagine my guy managing anything like that. We had a couple of good walks on snowshoes this winter, when conditions were just right, and that was such a happy thing to do, but he has given up on everything else, really. I try to get him to dance sometimes, in a sort of jokey way, and that's fun as well as getting him to practice transferring his weight from one foot to the other. He still drives, for not much longer I think, but he can't move far unsupported. I am going to use your guy's example, and that of Judy J, who just posted her experience with exercise, as a spur to get him trying more. It's hard, but that's living, I guess!

  • hi eastermcedar/goldcap and all

    recumbent bikes are great for exercising with - i used to use one at hte gym when i was able to go - am thinking of getting 1 for use a home

    but do nto want to waste the ££

    if it does nto work

    ebay has them i know

    LOl JIll


  • hi goldcap well mate my son who was a fitness fanatic and thought i should be doing

    about 300000000 press up a day and riding 20 miles and then going for a brisk walk said to me dad I have an exercise bike you can have to keep you going so I said to him keep me going where \\ I know what these young fellows are like well hes not really young now

    he just looks it hes 55 == 56 in sept so hes catching me up this is my eldest son the other son is 53 and my daughter is 50 so there you are anyway getting back to this bike

    it has about 8 programs on it of which I take the lowest of course until I have worked my way into it \\ every day he telephones in for a little chat but I think its just to check up to see if I have been on the bike not really they are all good kids I have no favourites I love them all the same anyway back to the bikes cam,e from a sports store but you can get them 2nd hand pretty near anywhere and I would not buy one new just in caser he does

    not take to it plus I think they are to expensive I would get one that is fixed I mean you cant ride it around not fixed like tampered with\\ otherwise if you get a bike that really goes places remember you have got to go with him I can just see you jogging along beside him hes doing about 50 mph anyway mrs goldcap you can make up your mind

    cant you \\\\\\I hope having this excise bike will be beneficial to me \\\ well mrs I am going away tomorrow in the van just for a quick trip to a nice little place about 2 and a half hrs away so its only a little trip just for a few days now so take care look after yourself regards to husband mate tell him to hang in there regards peter jones queensland Australia psp sufferer

  • pj, thanks for the info. I bet you could do do 300000000 press ups in your prime:)

    Sounds like you have good, "kids". I only have one boy-21. Wish I had had more.

    He is a good kid as well-smart wants to be a neuro- scientist or surgeon. I am not young but look it-ha! Same age as one of your kids-won't say which one. Woman never tell their age. I still get carded trying to buy spirits sometimes. Often the Mr. is mistaken for my father. He is quite a bit older than me but this has just started happening lately. You think I am growing younger?! Must be all the coconut oil I am cooking with theses days. Definitely NOT going to get him a bike that goes anywhere

    I keep losing him in the house that is bad enough, then he screams for me. Need a smaller house or a hearing aid. For me, he has perfect hearing. Enjoy your time away. I wish I could talk him into going somewhere-not much of an adventurer these days.

    Be well, JG

  • yes very much a quesiton of keepign going - an exercis ebike is a great idea - espeically the recumbent type which i used to use at the gym - i was passioinate about keepign fit and i think tha tis why i am stilll here upright most fo the time

    i go to a tai chi class once a week - great for balance btu i tend 2 fall over going out of hte class - doorway / right turn and people outside make it happen and i just go over


    my partner now comes in andcollects me to prevent htis happenign]

    lol JIll


  • Hi Jillann, I find that incredibly funny you taking a tai chi class for balance and then falling on the way out. I love your sense of humor and disposition. It will serve you well. I have taken tai chi and qui gong as well. Took a class called,"wine & chi", kid you not! Talk about falling on the way out:) I could barely make it out the door lol. Take care, JG

  • "wine and chi"! Wonderful!!

  • Where do I sign up!!!


  • I definitely think exercise helps. S has been seeing a private physio, which has got him a lot looser. Also the Neuro physio held a six week exercise course, twice a week, which helped him enormously! Now they are going to send him to an exercise class that they run for Parkinson's patients. S also used run, rock climb, hike etc., etc., so just doing something is helping with his well being as well! He got himself to a place, that recently he has been going off for short walks on his own. Unfortunately, a tumble in the shower resulting in a cracked hip has put a stop to that for a few days.

    As they say USE IT OR LOSE IT!!!


  • sorry to read of fall ? rails in shower might help my exercise class is free at present so will keep going mary

  • hi mary t just a quick postscript to my em I think that any exercise would be good for us providing you know your limits and do not overdo it just steady steady take care look after yourself peter jones queensland Australia psp sufferer

  • yes Peter I think u r right. I'm going to exercise my brain tomorrow playing bridge! Mary

  • dear Marytea13

    my dad can't really walk anymore without help , but a physic comes and this really helps. he also has an exercise bike at home - he needs help to get on and off. but as some other comments have said even if this is not a cure, this does help keep active as long as possible. you also need to get some rest after as PSP does make you more tired.

    I would recommend to get help to do these things even at home as you do not want to fall and hurt yourself

    take care


  • Oh, Yes! As I'm finding out...

    For the past 6 weeks, I've been receiving physical therapy 2-3 times a week at a center that specializes in movement disorders.

    What an amazing difference it's made in my life! The quality of my life gets better and better the stronger I get. But it's a lot of work. And daily. But so worth it!

    When I was evaluated the first session, every 'test' was timed/scaled, etc. And, on every test, for which there were many, I was at or below the 5th percentile for my age, meaning 95 people or more out of 100, had better endurance, flexibility, balance, speed etc.

    I had a lot of hard work to do. The emphasis isn't to be 'normal' but to better adapt to PSP's limitations, and find ways to work with or around them. And, to work on better balance. Lastly, they said most of the exercises are designed to be able to perform them from bed, since the reality is that is where we spend a lot, or most, or all of our time.

    For example, as with many persons with PSP, a chin-up, head-tilted back, posture evolves. I was there and for a long time. Via some specific exercises, it's gone...

    In fact, my brain now remembers I can turn my head to the left and right, and I can look down. It literally feels at times like my brain is rebooting...these simple movements that slowly disappear are popping back up. It's amazing.

    When I started, my gait was very slow, short-stepped, and stooped over. Had been for the last handful of years. I was literally taught how to walk all over again. My posture has improved so much. I now sit up straight, stand up straight, and take longer strides when walking.

    And, we work on balance, balance, balance. Mine is terrible which is not unique. My risk of falling is sky-high. We do lots of obstacle-course work and walking on un-sturdy surfaces.

    Another thing we work on hard is turning. Didn't realize how much this contributed to my falls, but it did. Now I only turn in a 2-step fashion. Working hard on stepping backwards; still coming hard; almost always makes me fall.

    And, they said, absolutely no more pivoting or reaching for something higher up, for that matter.

    There are several things we do there in the safety of that environment that they do NOT want me doing at home. They insist. Too risky.

    I'm continuing for several more weeks. What I've achieved I didn't think was close to possible, but is a daily challenge, every hour of it.

    The best concept they use is to "BE BIG!". Those 2 words alone have changed how I'm dealing with this disease. They use it because they say with PSP, it naturally diminishes our movements, and large and small motor skills, right down to the volume of our voices. So, we should be 'big' in everything we do or say and be consistent. They say it's the best defense and a way to slow this train down.

    The great majority of things/exercises I've learned there I've neither thought of or read anywhere. It has been a wonderful blessing...tho I do have my 'ugh, not again!' days:)

    I don't know that it's a safe thing to try to exercise well with PSP unless you work with a professional first, at least for an evaluation. I knew I was unsafe before, worse, felt exhausted and helpless, but didn't know how bad it actually was til I started there.

    Here in frosty Minnesota where our winter is horrid - say 'is' because we just got 10 inches of snow on Friday...sigh...I'm looking forward to being able to go for a 'walk' for the first time in years. A simple, lovely, in-the-moment, walk. One of life's simple pleasures that PSP takes from us.

    I do encourage people to seek physical therapy if they haven't already. I was very, very limited and didn't have real hope for improvement. Now I know it's possible.

    Blessings and love to all of you.

    Judy Johnson

  • I'm so happy to hear your good news, Judy. I'm going to be citing your example as an incentive for my guy to move more. Unfortunately I can't find anything like the program you describe up here in the relative wilderness. I looked all over today and can't find anything except an exercise program at the local Y for "active seniors," which my guy is not. There's a local Parkinson's support group that meets once a month - that's it. Very disappointing!

  • You might want to narrow your search to strictly physical therapy if you can get insurance approval. A PT worth their salt should be able to help even if it's not in a movement disorder center environment. BEST of luck and wishes to you in this endeavor. It really does help. I know I'll never have a 'regular' day of activity or function at a level or pace I did a handful of years ago, but what I've achieved over these winter months has been remarkable. Didn't think, at all, after years of immobility, rigidity, and imbalance, it was even a consideration. Keep looking and don't give up. It sometime just takes the one right person to make a world of difference and he/she is out there.

  • Thanks so much, Judy. I told my guy about you and he was really encouraged to think it might be at least possible that he could get some of his mobility back. Me too!! Good news is pretty scarce with psp, and this gives us something to do, which is good in itself. Our neurologist, who specializes in psp, is pretty good about prescribing all the PT the insurance allows, which is pretty limited, so maybe I need to take it up with the insurance company. Cheaper to prevent the falls than fix the bones, I should think! Really, after all the hard times you've had, I am VERY happy to hear you're doing so well. Good things can happen to good people after all. All the best, EC

  • p.p.s. Judy, just to be clear, please know that when I said "good things happen" on the previous post, I didn't mean to suggest that you didn't make this happen yourself, with lots of hard work and an amazingly fierce attitude and heroic persistence and courage. You're inspirational. Thanks for generously and thoughtfully using some of your store of energy to help me and my guy. Love, Easterncedar

  • hi

    the parkinsons groupmsy have exericise sin it - i go to alocla group which has a grea tsession for us all

    and w edo what we can

    lol JIll


  • Hi Easterncedar, just reading these old blogs. You say the only exercise program you can find is for "active seniors". Have you looked into this? My Mum went to one and she hasn't done anything for years. All the exercises that she discribed to me, S was doing with the Neuro Physio's class that he went to!

    Go and see the class, your husband may be able to do most of the exercises. I know a lot of the one's, Mum was doing, were from a chair!

    You may think that your husband won't like being in a room full of"old people". I thought the same when S went to his classes, but he really loved it. I think it was just getting out and doing something. If you dont think the person is qualified enough to help with PSP conditions, then stay with him and help. You might find it fun as well, because you can always help someone else and get involved with others. As they say " a change is as good as a rest!!!"

    Anyway, just go and see, the worst that can happen is you find it useless, but it might be a real help to you both!

    S starts a class for Parkinson's next week, so we both have high hopes for that!

    Best of luck


  • I think that keeping active for as long as you can applies to PSP, CBD, MSA, Parkinson's and many other diseases. The old saying "If you don't use it you'll lose it" comes to mind.


  • marytea13, I definitely think it helps. My partner still goes to the gym every day though he has modified his workout quite a bit. He has physical therapy once a week and they have a zero gravity treadmill which he walks on and can watch his gait in the monitor. This has helped him enormously! He also takes a class there that is for Parkinsons and other movement disorders. PSP is like other degenerative diseases in that it is hard to get motivated when you feel so tired and achey but when you do the benefits outway the energy it takes to do it. Also there has been numerous studies that show that exercise is beneficial to the brain even in the general population.

    Exercise (especially aerobic) increases blood flow to the brain and that has been shown to increase memory,& cognition, in other words make you sharper and more aware. You should try to do at least some light weight training to keep from losing your muscle mass. Is there a trainer who can show you a few exercises to do with lite handweights-maybe 1-3lbs to start? A strong core can keep you upright longer and also help with your mobility later on in moving from one position to another and from a bed to a chair or wheelchair. Flexibility exercises are really helpful for maintaining balance to avoid falls. Also exercising release serotonin a feel good hormone that helps fend off anxiety and depression and we could all use a little of that right? So keep up the good work and be well. Take care, gc

  • i agree with all u have said goldcap

    good on yer

    my typing si gettign worse so wont writ emore nwo



  • Come Jill, keep typing. I love reading your comments. Always straight to the point! But as you were saying about exercise, typing is exactly the same. You have to keep using all the parts of the body, fingers and brain especially. We can all work out what you are saying , so don't worry about that. There is always "spell check"!!!!!

    I look forward to your next comment on whatever subject comes up next!!

    Lots of love


  • Keep as active as the body will allow. Rigidity, soreness, muscle weakness are all going to take their toll. With or without resistance bands, light weights, etc. movement is very important not only for keeping the joints and muscles active but it helps with circulation. My father rode an exercise bike for as long as he could. Once he was not able to do that, we looked at purchasing a peddle type machine that lays on the floor so he could peddle from his chair. He decided that he didn't want one of these and we noticed that he quickly lost different aspects of his physical ability.

    Sorry if I do not make sense. I have not been able to sleep and have been up most of the night...

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