Does anyone know if there is a way to regain physical strength during/following PMR? Hubby and I have been keen golfers all our lives. Hubby was a low single figure handicapper but he basically can hardly play at all now as he has no strength. I do realise that in the greater scheme of things this is trivia and certainly compared to some of the horrors that people on this site are experiencing but just wondered if anyone has any thoughts on this. Hub is saying he will pack in at the end of this season if there is no improvement and currently I cannot see any signs of anything even remotely resembling his former abilities.
I know its not that important to most people but quality of life etc and an improvement in strength would boost him mentally enormously.
He has just reglassed the greenhouse after the recent accident so that was good and we are starting pilates next week in a private class.
Thanks in advance for any comments.
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piggylovesgolf
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Pilates is good - and discuss with instructor any specific concerns - will adjust/advise exercises accordingly as it’s a closed session for you and hubby.
Thanks DL. We have filled in details on a form already and I spoke to someone there. I gather from a friend who rated then very highly that they gear all the exercises specifically to the individual so hopefully.......👍👍👍👍👍👍👍
I know he has had PMR for three years now, but strength gets really sapped by this disease.
Can I suggest that rather than having the mindset that if he is not up to a certain standard by the end of the season, he tries to change his plan. And aim for a time 6 months 9 months or a year down the line when he could have trained himself back to near his original standard.
Break the game of golf down into a few parts.
Does the walking tire him out? Does he use a buggy? If it does tire him then gradually increase walking away from golf...five minutes more out and back each time.
Does he wear himself out by trying to play ‘normally’? Ie with others, trying to keep up and making comparisons. Might it help to go to the driving range and gradually increase the number of balls he hits each time.
Strength training is a tricky one as PMR a muscles do not react well to repetitive weights. I got back to reasonably high standard tennis by finding a personal trainer, whom I ‘taught’ about PMR and we gradually increased my strength without DOMS (delayed onset muscle soreness)
Hope this helps. Sorry if I am preaching to the converted, and you have already tried similar.
Last thing....nothing is trivial if it affects the things you love doing. There are many sporty people on this forum who would totally understand what is almost a grieving for what he used to love to do well..
Thank you Mary. I'm so pleased that many people who have responded didnt feel it trivial. I have always known, as has he, that he is nowhere near as bad as many of the people on this site---although it was absolutely hellish at the beginning but Pred was unbelievable. After about 4 hours the pain had gone and he described himself as Lazarus!!!. However the b****** returned of course but nowhere near as bad. But even so---apart from bringing up our children-----golf has been our lives. Walking isnt really a problem-- he plays 9 holes 3 times a week (he also cycles) but its a strength thing in his muscles. He just cannot swing the golf club properly. He came home yesterday, announced he had had an air shot on the first tee, crossed his name of all the bookings he had with his mates and said he was not going to carry on playing like this. (Phone calls ensued from his mates who refuse to let him give up) I have suggested we go down to the range at our club and hit balls on the range to try and build up a little strength, co-ordination etc and see how that goes. I like going to the range anyway so I have promoted this as a "trip out" and something enjoyable. I know he will never use a buggy. He has been a good golfer all his life although has deteriorated over the last 10 years due to an earlier illness so he will never regain anything like his former abilities or skills but currently he is embarrassed by how badly he plays and he is a proud man. He started golf at age 21 and got to single figures in 8 months. I dont know anyone who did this and he remained a category one golfer for nearly 40 years. So its hard really 😒😒😒😒😒Thank you for taking the time and trouble to respond to this. Also lockdown hasnt done anyone any favours has it !!! But nice weather currently and as Captain Tom said ................
And Im sure that pilates will help and also JINSAC has sent me an exercise plan. Onwards and upwards!!!!
I wonder if he is bereaving himself by his lack of understanding and acceptance? Aging inevitably puts constraints on us. Embarrassment and pride can do more damage than illness. But I do see he is unlikely to to accept any of that without someone being a tad sneaky in some way. He WILL improve and probably get over PMR entirely - but shutting himself away from his mates will make that recovery harder and less likely.
Yes he will find it difficult as he has been extremely active all his life. Re shutting himself off from his mates I can see him current sat in the garden on the phone and it's the call he was advised would be coming!!!! He is smiling about something and as I said to Charlie boy in this post per his mates "giving up is not an option". Sneakiness is good though. I've mastered a bit of that over the years!!!!
I am sure the Pilates will help. I have a rheumatology, physiotherapist whose remit is just that - to enable and assist me in improving my strength / flexibility and general fitness. She has provided me with a series of exercises to do with increasing regularity. This includes breathing exercises and a particular emphasis on my hand strength. She is all for my walks around the neighbourhood being gradually increased. She is keen that this is done in a controlled way - listening to my body and being patient not ramping up the regime too fast. I liked her straight away and am more likely to stick with it with her help and guidance. She really understands our diseases and drugs which is such a refreshing plus and change. I let things go shockingly over the winter - a kind of psychological slump. Good luck and happy golfing.
It should be possible but it isn't an instant answer. You need to start VERY small and build up slowly. It is essential to not overdo things on the way and get to the stage of developing DOMS, delayed onset muscle soreness, which will then set you back while you wait to get over it. Not sure how to go about it specifically for golf but the first place to start is increasing endurance capacity. There have been people who restarted golf while still with PMR. A guy called Michdonn had a flare due to overenthusiastic reduction and his wife was taking him to appointments in a wheelchair because walking to the gate and back exhausted him. At Easter he was on 30mg and felt awful, not to mention being very down about not being able to exercise at all.
My suggestion was to start with the distance he knew he could manage and time it. Then to walk half that time out and then back. The next day should be a rest day for assessment - if he felt OK, he added 1 minute out, i.e. added 2 minutes altogether, the next day. He continued with that pattern until on the rest day he could feel the effect. Then he stayed at that level for a few weeks to train before trying adding time again. He carried on like that to the level he wanted to get to - once you have a suitable time for walking you then stay at that but work on time/intensity and can add inclines if that is possible. By the late autumn he was able to start skiing again - Mich is a ski instructor for children. The following summer he was back to cycling in the local mountains in New Mexico - so all at pretty high altitude though he does live there. I should also add, he is over 80!
a former firefighter who was training for the Himalayas and marathons when PMR struck and put him in a wheelchair at 51. He credits the hydrotherapy he was able to access for getting him on the path back to fitness. Unfortunately it is next to impossible to access for most of us.
In terms of golf, maybe start with just a few minutes on the driving range before building up? Then use a buggy so all you are doing is the golf bit and not the tiring walking bit (in terms of PMR that is). Increase the distance you play and walk slowly - never do anything all at once. As time goes on you can increase more at a time but still be careful.
The reason for the slow approach is that your muscles are unable to signal you are asking them to do too much until it is too late. It will take a lot less to cause DOMS than you are used to, and even worse it will be more intense and take far longer to get over. Training involves causing tiny tears between the muscle spindles which then heal and leave the muscle stronger and able to do more the next time. This healing is also impaired with PMR and pred - so when you do too much it may take weeks before you can do something without pain and pain makes you feel weaker. Once it is done it is too late - you have to be disciplined and not get into the situation to start with. If you don't, it will be to your detriment.
NEVER be tempted to do "just one more hole" - in a different context I felt really good one morning early in the ski season and gave into the temptation of "just one more run" - these were very short, very blue runs, 9 minutes of very easy skiing, with lifts rests inbetween. 3/4 of the way down I hit the wall of fatigue and that last few hundred yards took half an hour despite being just an almost flat traverse. Every December I started like that - I couldn't manage a single longer run that was the same distance, I had to have the sit on the lift. I couldn't ski every day. By January I was up there all morning, sometimes on consecutive days, and skiing for a lot of the time but always our lovely short runs in the sun. By pacing and resting and knowing my limits I was able to ski - but I had to start afresh every season. There is no close season for golf as far as I know ...
Well many thanks for that PMRpro and what an inspiration those stories are. (See reply above to Mary). He does play 9 holes 3 times a week---says he could possibly get round 18 if he had to but he would in fact suffer the day after and possibly the day after that too So yes--- I get that dont be tempted to play the extra hole. Im working on him and doing the best I can to regain his quality of life. Not always easy though is it !!!
Hi,Whatever else you decide between you, I would advise not to give up the golf.
People have already given some excellent advice in their replies which I absolutely endorse. I was a regular racquet ball player when first diagnosed six years ago, and to begin with knew next to nothing about losing strength, so I just carried on! Eventually it dawned on me that the reason I kept on losing was due to fatigue etc etc. So, I just had to lower my expectation, and accept the PMR for what it is. Part of the benefit of playing is the social aspect and banter you get in the bar, and, of course, I have missed this like everyone else during lockdown!
I guess your husband will be very competitive as a single handicap golfer, so he may have to accept he may lose a bit of handicap? Better this than to stop altogether.
Hopefully he will gradually begin to regain his strength, and his touch when he gets to play again.
I took up Pickleball after being diagnosed with PMR and hadn’t had any problems until I pulled a hamstring so .... I’m waiting for complete healing before starting to play again and will alter just how virgerously I go after shots. It’s a hard thing to do when you’re competitive!
Thank you Paddy---sadly he has lost more than a bit of handicap but we both totally agree about the social side and he will miss the banter as he is usually the cause of most of it. I had a distressed call yesterday from one of his mates who said he has lost the acerbic wit they are used to as he used to give them all a bad time and they retaliated in kind. But the message was basically that "giving up was not an option". Quite heart warming really, clearly hes quite popular despite not suffering fools gladly and giving them a bad time. Actually--- I quite like him too!!!😀😀😀😀😀 Detailed post given in my reply to Mary
Thanks for your reply. It sounds like you really are a great support to him, which is lovely.I do sympathise with your situation; I am sure it doesn't help that his mates probably don't fully understand what he is going through. You really do have to have PMR to realise how it affects you.
Hopefully he will, in time, regain his mojo, and is able to give back as much as he receives from his golfing companions! It does get better - honestly.
Do it slowly and when something new has been attempted, wait a couple of days to assess. I didn’t have PMR and even 8 months after end of Pred, I’m still trying get right in order to get to doing something that people would recognise as exercise. The worst movements I find are twisty that use all the small muscles and ligaments that you don’t use when you do movements in a straight plane. Beware thinking low doses don’t have an effect; I noticed a positive change even from 3-1mg. I suspect it is a delayed change because even off the Pred my body is still changing.
I am so Sorry to hear that your Husband has lost strength in playing golf! That is not at all a trivial concern, being that it is so much a part of his life and yours. Best wishes and prayers for recovery and strength.
Thank you so much for that. So pleased its not classed as trivial. He does go cycling though and yesterday did 22 miles so thats not bad for someone with PMR who is on the point of chucking in the towel at golf!!!!
Sorry to hear that, my hubby and I play so I can imagine what a loss that would be. Is the problem lack of energy & stamina or really weak muscles? Small steps, small achievable goals, I’m sure Pilates will help & your trainer will be able suggest exercises to build strength once she knows where your hubby is at. It might be easier to try just 3 or 4 holes of golf, with a bit of putting/ chipping practice while his strength is low. Pmr cruelly alters our expectations which is so hard to accept. However some do overcome & get back to normal, I’m hoping anyway. Good luck to your hubby, keep going & hope he comes through ok.
That was interesting HeronNs. Encouraging that he eventually got his strength back to normal. he sounds to have been rather like hubby in the active sense. I am having to do some nagging now to get him to buy into this exercise thing--- I think he has given up a little and just thinks he is stuck with this for ever. We do know 2 people who never got rid of it and one remained on pred for 25 years----mind you she died recently aged 95 so that was pretty good wasnt it!! The other has been on pred for about 14 years and I think hub thinks this is now his lot in life!!! Im taking charge though😀😀😀😀👍👍
There was another man who was I think facing life in a wheelchair who started simply by forcing himself to take a very short walk every day and within a year was back teacing ski lessons! May still post here, Michdonn , but his story is definitely on Patient.
On the other hand, you can lead a horse to water, but.....
I have just noticed these stories are all about men!
It's here - I described him yesterday or the day before. He wasn't so much facing life in a wheelchair, he had a flare because his doctor made him reduce too fast and couldn't walk beyond the garden gate
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So yes--- I get that dont be tempted to play the extra hole. Im working on him and doing the best I can to regain his quality of life. Not always easy though is it !!!
Follow up to: Help I’m not sure what to do next. 
Not to bad but not Brill
another cervical stenosis update!
