Definitely NOT off piste! Things you can do with PMR:

[PMRpro]

This Santa makes me ashamed! At Easter nearly 3 years ago he was in a wheelchair being pushed to doctor's appointments by his wife, on 30mg pred and he was in despair. He started his recovery by walking around a nearby lake and built up the distance slowly as we tell you about on the forum. By the following ski season he was back up the mountain - and, as it tells you in the article, gained an award the following year. I was privileged to meet him last summer when I was in Albuquerque at a meeting. He is an amazing guy and thoroughly deserves his place in their Hall of Fame.

ladailypost.com/content/san...

[Longtimer]

Lovely, have to say since having PMR, this is the only time I wish I was a man!.....am I right in thinking on average they have it for a shorter time?....

[Charlie1boy in reply to Longtimer]

Hi,

I'd like to think that was true, but I have just passed my fifth anniversary.

Haven't had any flares, but my taper has been very slow with a few ups and downs of a minor nature.

Now down at 1.5mg, and thinking most likely, and with some luck, I might end up at the 5.9 years average!

As you will have guessed, I am male.

Good luck

Paddy

[Longtimer in reply to Charlie1boy]

I hope you continue to get to zero...I would be very happy at 5mg or under....think I would have a party!....8 years on.

I always seen to follow a pattern....8mg or under and after about 3/4 weeks, in comes the low back stiffness and fatigue!....I just wish I had earned it, but haven't done anything different.....such a puzzle...

Hopefully 2020 will be your year...👍

[PMRpro Ambassador in reply to Longtimer]

So stick at just above - stop driving yourself mad! Mine doesn't change a lot - and the borderline dose remains similar.

[Longtimer in reply to PMRpro]

Well when I read on here what other people can do this is what puzzles me...and I admit can make me feel low sometimes.....travelling is out at any distance....and the blurred vision restricts many things...

I'm keeping positive, onwards and upwards (not up much more I hope!)

Thank you.....

[PMRpro Ambassador in reply to Longtimer]

I know - there is so much variation. But I think the rheumies are beginning to appreciate that too.

[PMRpro Ambassador in reply to Longtimer]

They seem to have a different journey - and often shorter/easier. But as Charlie1boy says - not always! And I know women who were through and off pred in 2 years ...

[scats]

That's inspiring.

Most days I try to walk a bit further than the one before, it is a very slow process! When I get as far as I can I mentally choose the next days target but PMR being what it is I often can't reach my current best. Seats along the way would help as I always have to judge when I think I still have enough strength to get home, but these aren't a feature of the laes around here.

I don't intend giving up, and I've been doing it for 3 years now,I can see the sea in the distance and I WILL get there eventually, but don't expect me to be giving skiing lessons.

[PMRpro Ambassador in reply to scats]

I think increasing the distance daily is a bit too fast - stick at a given distance for a week or two before adding another couple of minutes. I hear you about the place to sit - some I know actually drive/take the bus to the place they do their walk and then walk out for x minutes and back again. Then x plus 1 minute out and back gives you 2 mins extra over yesterday!

Or seriously consider a rollator - you can carry your book, a drink, shopping AND the best bonus is that you always have a seat available if you get stuck or when you get to the sea! They seem to be encouraged for rehab here where I live, you rarely see someone with a walking stick - elbow crutches allow a good and more natural gait in the early days and then progressing to a rollator is common. The advantage is that people are walking and getting some exercise - which they aren't when they "give up" and get a mobility scooter.

[scats in reply to PMRpro]

You are right it is more likely to be time than distance and although I set a goal It often takes a while to reach it.

I use norwegian walking poles as they give me more stability and exercise my arms at the same time. I have always resisted using the car to go for a walk, because it's nice around here, and I like the familiarity of it, but now might be the time to change.

[PMRpro Ambassador in reply to scats]

By doing it according to time it takes your speed into account too - after all, some days are better than others!! I like the idea of using the car or (for me) the train/bus to go somewhere for a walk because that opens new doors - or should that be gates? And if you walk along a bus route you have an option to bail out if it gets too much.

[Grammy80 in reply to PMRpro]

I did want to share something with you.....since I rely on other people to drive me to appointments I use my cane so they don't have to put the rollater in and out of their car...average appointment they have to do it four times. The rollater gives me the chance to sit, as you say and that is appreciated. Now...it is icy in Maine and stays icy until spring so venturing out is not at the top of my list.

I purchased a mobility scooter years ago...don't have it anymore. I had just had a total hip replacement and my first grandchild. The family had moved from New Hampshire to the Czech Republic and the only way I could travel from the states was on a scooter. I later sold it to a disabled person. If I have the chance, however, to do my own grocery shopping with a supermarket scooter instead of hiring someone....I do it. I know some folks won't ride them...but it comes in handy when you think you are done and that 'one' item is waaaaaay back on the other side of the store. I guess for me...everything has its time and place.

I agree...the Rollater Rocks! 😉

[Hidden in reply to Grammy80]

My friend agrees re rollator. Hers is currently on the back seat of my car in a hammock thing. She is almost 85 and can still have a country walk and sit because of it. I was getting it in and out but if she doesn't need it it stays in my car until I pick her up. I will get one for sure when the time comes.

[Grammy80 in reply to Hidden]

That's great....I hope I'm out there 'rollating' at 85~!

[Hidden in reply to Grammy80]

I hope I am too. Its only since she had a fall she has needed it. We have walked for 12 years and it's only in the past year I can go further than her....only 25yrs plus age difference... And I am not 110yrs.

[Grammy80 in reply to Hidden]

🤣🤣🤣 You are so funny! When I get off the computer I'll calculate your age...I only know you are much younger than I am~! So sorry she fell....I have 'gracefully' fallen twice in the last month and only had a few skin tears....She sounds amazing and will keep you on your toes...no slacking~!!!

[SheffieldJane]

A really inspirational story!

You do so much for all of us though PMRPro, never underestimate the positive impact you make. You may not teach us to ski, but you do teach us to live well with chronic illness. ⭐️⭐️⭐️⭐️⭐️

[PMRpro Ambassador in reply to SheffieldJane]

Thank you!

But I do have to confess - I'd often rather be skiing

[Grammy80]

Wonderful article and a good reminder to me to WALK....and build myself up! I think the adrenalin of human contact, that Santa has with the children, is the best medicine. I know I always feel better and 'do more-longer' when I'm with people....thanks for sharing that positive story.