A dilema!

[manitoba]

I try to encourage my wife to exercize to help her core and ultimately her balance. The problem is after 15 minutes of exercizes she is pretty much exhausted for the rest of the day so I'm not sure if this is the right thing or not. Any thoughts? She gets around not too badly with her walker but is now up to between 15 and 20 falls per month. Thankfully no broken bones yet, but it is probably inevitable.

[dorothy-thompson]

Hi Manitoba

It is a dilemma isn't it. My husband, from the age of 10 or 11 right up until two years ago, was a fitness freak, you name it he did it. Now he spends most of his days asleep, consequently there are very few falls, thank god, but being immobile brings other concerns, mainly to do with constipation!

But on the few occasions he wants to and is up to it, we walk around the house with his walker, but better than nothing I suppose.

Kind regards

Dorothy thompson

[manitoba in reply to dorothy-thompson]

Thanx for your reply Dorothy. Sleeping doesn't seem to be a problem yet. She spends most of her day in front of the TV which I don't suppose is recommended, but seems to be what she enjoys.

[shasha in reply to manitoba]

I TO WATCH A LOT OF TELLY BUT ONLY AFTER I HAVE DONE MY COMPUTER STUFF LIKE EMAILS AND THIS GREAT SITE - SO GIVE MY LOVE TO YOUR WIFE AND TELL HER SHE IS DOING OK !!

[deew]

My husband is pretty much the same,I tease him and tell him I'm going tape the remote to his hand.He watches it sometimes like he has never seen it before . Its better then sitting and fretting about whats going on with his mind and body.I do miss him.

One day at a time

Deidre in BC

[jillannf6]

Hi,I,have PSP and also try. To keep ,exercising it i gets more difficult to do,these as I freeze like mad.

But it is essential to do so i have ,always been so ,keen on keeping fit and Cannot swim any more It is about doing what i can when i

Loljlll

And a

[manitoba in reply to jillannf6]

Good attitude Jill. If you don't mind me asking how long have you had it? Do you use a walker?

[jillannf6 in reply to manitoba]

O I was dxd 3 years ago but have prob had it since I fell out of my chair and fractured my ankle 6 yrs ago

But i am lucky in that I have the slow sort of PSP and sm still uprigt most of the time

I,have a walker but have started gfallling backwards as well as Fwds Andit has landed in top of me a couple of times do,sm hoping to get an electric wheelchair for inside the flat

Lol Jill

And a

[deew]

Good for you Jill ,You seem to have a very good attitude. I do wish he would be more active but it is what it is and again one day at a time

Take care of yourself.

Deidre in BC

[JoJo-K]

There is an excellent exercise DVD you can get from the Parkinsons Association, that was recommended for my Mum. All of the exercises are to be done while sitting down. Worth a try maybe?

Best Wishes

JoJo

[jillannf6 in reply to JoJo-K]

Hi yes I had it and did the excs with ,my carer

But lost it when I moved Lol, jill

[shasha]

HELLO MANITOBA IT IS ESSENTIAL THAT YOUR WIFE EXERCISES - EVEN IF IT MAKES HER EXHAUSTED # I HA VE A PHYSIO WHO COMES INTO MY HOME 3 TIMES A WEEK AT 7.30 AM !! I DO VARIOUS EXERCISES LIKE WALKING AND MARCHING AND LEG STRETCHING SHE ALSO LIKES ME TO GO ON A STATIC BIKE - BUT AFTER SHE HAS GONE I AM TTOTALY EXHAUSTED AND HAVE TO GO BACK TO BED FOR A COUPLE OF HOURS .... STILL I WOULD NOT WANT TO STOP DOING THE EXERCISES - SO ALL THE VERY BEST TO YOU BOTH AND KEEP UP THE GOOD WORK !!

[jillannf6]

Hi yes weall have good & bad days

( have forgotten what I

Wa s goin to say)

But not sleeping at all well doesn't give m ebmuch energy to vdo much and fslling over so msnry times a day takes it out of me

Lol,Jilll

[SharonAB]

Dear Manitoba,

My husband goes to hydrotherapy once a fortnight (if there are no leg injuries) and community group physio classes once a week (which I understand are mainly exercises whilst seated and for inside short distance walks from 20 to 50 metres) and attends one to one physio exercises to act as reinforcement reminders once every couple of months. Most are geared around maintaining balance and posture whilst walking, and getting in and out of vehicles, chairs and out of bed. He also receives gentle leg massages and is prompted with doing raised leg exercises with a carer assistant at home every second day mid morning and early evenings.

Regards,

Alana - Western Australia

[SharonAB]

I forgot to add John's walking normally is with the assistance of a KAYE walker. An aluminium framed walker that fits around the back of his body - instead of being pushed along in front.

(That is - When he is not speeding along in his motorised gopher).

I am yet to hear of anyone else using the same who has PSP, or for that fact any adult using one as they have been designed for children with walking difficulties to use.. It's trial came about when John refused to use any walking aid (I called it male stubborness at the time!) and I was able to fortunately locate one, hire it and John agreed to give it a go!

Later on John further admitted if there was anything in front of him he felt a magnetic pull and felt like he was toppling over, hence his aversion to trying anything.

As I understand it the KAYE walker (American design) is normally made for those with cerebral palsy.

Anyway it has been a tremendously useful aid over the years, especially when I think back I thought it may have only been of use for a couple of months.

Regards,

Alana - Western Australia

N.B. It was a pretty expensive purchase as it was under patent at the time, but I think may have been lifted now and there are very similar on the market now?

[manitoba in reply to SharonAB]

Thanx Sharon. I find that interesting. The Therapist that we see recommended she not use anything motorized mostly because of the balance and the poor eyesight. Perifial vision is lost and even looking forward she says it's like a cloud over her eyes even though the optomotrist says everything his normal.

[peterjones in reply to manitoba]

hi manitoba i would definately keep on with the exercise nothong to strenuous though it keeps you going i go to balance group for exercises once a week its a bit energectic but i find it helps \\\\ one day at a time mate steady steady thats what i say\\\\\ did you recieve any of my em to you mate i have had a lot of trouble with the puter i think they are like us they are ok on a good day see yer peter jones queensland australia psp sufferer

[SharonAB in reply to manitoba]

Dear Manitoba,

When John first received a 'gopher' it was supplied through the state hospital system and he had to undertake a road safety test as I was concerned about his driving capabities.(I efffectively 'banned' him from driving the usual cars with what I witnessed before Dr's made the suggestion). Testing was carried by an OT in a large hospital carpark, and around a couple of nearby streets and he passed. The theory was John would drive it for a while then be using an electric wheelchair with controls that could be set to front and/or rear use. Instead after 2 years he handed back the gopher and gave lots of reasons about why he no longer liked it - size, colour etc and purchased a faster one that is four times the speed and of the same colour and size!(OT had speed reduced the 'hospital issued one). Now OT are heavily promoting a wheelchair controlled from behind which he has declined at present.

I'm leaving it up to 'greater beings' to decide the next course of action.

(I've separated from my husband - and his extended family - just last weekend infomed me looking after someone with PSP is easy - and quote said 'it is as easy as eating a piece of cake!)

Regards,

Alana - Western Australia

[manitoba in reply to SharonAB]

Sorry to hear about the marital situation, and we all know about the difficulties. Regards, from the other side of the world. I guess you're starting you summer while we are beggining our winter which makes it much more difficult to get around with all the snow and cold. Hoping to get someone in for a week or so in order to get a break. Starting to get stressed out.

[SharonAB in reply to manitoba]

Dear Manitoba,

Think positive - you will! get a break to switch off for a little.

Cold weather and snow is something most West Australians dream about. Most perceive it to be light and delicate and always falling gently and then the sun shines - and it melts and drains away ever so easily. Well I did, until I caught the travel bug a few years ago. So my thoughts are with you!

Regards, Alana

[manitoba in reply to SharonAB]

Enjoy your travels. We did for the first couple of years and it's something I assumed we would be doing for a long time. But that has been cut short like a lot of other dreams.

[manitoba]

Yes Peter I have received some previous e-mails from you and I appreciate them. You're a great source of information from the sufferes perspective. Keep them comming they are appreciated.

[jillannf6]

I too have PSP and man felling far too many,times a day

My knees are v sore do much so that ui have had to miss my tai chi class this week but i shall b there again next week

Lol jill

:/)