Physio is a must!!!

[Heady]

Hi all, as some if you know, I am in South Africa at present. We come here twice a year. It's been six months since our last visit, so I was very apprensive about the difference I would see in S. Since our last visit, he has been doing the multi directional exercises - "big" movements. I know some of you do them! Thus he has been doing twice a week with a physio and occassionally I have done them with him.

The difference is quite remarkable. I didn't notice at home, but here! We have steps in this house (none at home). I have had to help him up and down them for a couple of years now, but now, he is coping fine on his own. We have a pool here, he is now able to swim again, six months ago, he was sinking all the time and had no confidence, can get in out if the pool, still struggling with the cold water, but we have got solar heating in now, so that has helped with that problem! Even managed to walk to a restaurant the other evening. Something I wouldn't dream of happening a few months ago!

Of course, this is all having a knock on effect, he is happier, more confident, so is doing more, therefore can etc. etc. etc.!!!!

Anybody that is still capable of doing any physio, if you are not doing these exercises, please, please find out from your doctor how to find somebody to help you! We have got into this through our physiotheraphist (on the NHS!). One day a week, S goes to the local gym on a GP's referral and we have a private visit at home doing the same exercises! It worth every penny and then some!

I know we can't beat PSP, but this is certainly keeping the worst of the smptoms at bay. To me, every day out of a wheelchair is one less he will have to suffer in one!!!

If you have just been diagnosed and thinking life is over. ITS NOT!!! There is something you CAN do. This is NOT the magic wand, but it's something that will help. PSP is evil and getting its own way in every aspect of our lives. These exercises are just a small tool to help keep it at bay. But in our world any small improvement in movement, any small improvement in apathy, any small improvement in enjoyment of life is BIG!!!!!!

Lots of love

Heady

[jzygirl]

Heady I have to agree with the physio part. Brians arm was quite locked and hand clawed and we was given some simple stretching exercises to do and I have noticed in a week that the muscles are beginning to strech and arm has a bit more movement in it and the fingers are more flexible. Being as I have to do all the work I am losing my bingo wings as well so its a win win as far as I'm concerned. Enjoy your holiday wish I was there as well. Janexx

[Heady in reply to jzygirl]

Hi Jane,

About 18 months ago, S would not use his left hand. Came up with loads of excuses, shoulder hurt, he was right handed therefore couldn't or didn't need to use his left hand, if made to he could use it fine. But then he fell down two flights of stairs and broke his right wrist. All this was about the time, We were starting to realise, that his problems were not stroke related. Anyway, after a couple of days of me doing nearly everything fro him, the left hand started to be used. Slowly at first, not easy for any of us, to learn to use a different hand. By the time the plaster came off his arm, the left hand was permanently in use! Even though at the beginning, it was starting to get the claw look! Even, now, although the right hand is backing working well, S is still using his left hand. He keeps trying to stop using it, but with me nagging(yet again!) and his body not letting him, everything is fine(ish!). So, yes, with hard work, our loved ones can regain some movement back. After all, there is nothing wrong with any of their body parts, it's just the brain saying there is! A small fact that none of us really take any notice of, as we only see the physical problems! Perhaps we ought to start making more of this.

Keep up with the stretching!

Lots of love

Heady

[jzygirl in reply to Heady]

He is/was right handed so it has been very hard having that side out of action and up untill this last week this has been largely ignored. But when we went to neuro-rehabilitation she showed us how to manipulate the arm leg and hand to strech the shortened muscles out that will benifit him and should give him some movement back. Will take time and effort but well worth it. Keep up the good work in the sunshine. Janexx

[kryste]

If have been trying to figure a couple of words out that people say and thank you very much for the info but what does physio and carerrs mean ? and what is multi directional exercises never heard of it but it sounds great

[Heady in reply to kryste]

Hi, physio is physiotheraphy, exercises to help movement. Carers, well, we are the ones that look after our loved ones. I take English is not your first language. There is no other word used, I find it quite offensive, I am no longer a wife, but a carer in the eyes of the world. It does seem rather patronising, but nobody comes up with another word, personally I think it should just be "something the dog dragged in". Sorry, I have been in hiding, but PSP has just caught up with me again!!!

Lots of love

Heady

[jzygirl in reply to Heady]

Heady I always say I am Brians personal assistant. As you say carer takes away the personal aspect of what we are. Janexx

[jimandsharynp]

Heady, Couldn't have said it better. Thanks for sharing this important aspect of the PSP disease. Jimbo

[kryste]

Well thank you and English is my only language Caregiver sometimes I am not the brightest crayon in the box I hope u feel better.

[easterncedar in reply to kryste]

British English versus American English. How's that saying go: "The English and the Americans, two peoples divided by a single language. " I find I rather like "carer" instead of our "caregiver" since to my mind it seems like one who actually cares about the person, rather than one who supplies physical services.

[easterncedar]

I second the recommendation for the "Big" exercises. Look up LSVT Big online and you'll find lots of information and videos. My guy can pick up his foot now, and he had been dragging it for six years. Mind you, I have to remind him and keep at it. As Heady said, the problem is in the brain, not the muscles, so theoretically we can redirect some of the messages and make new pathways for improved movement. And hope helps. Love and peace, Easterncedar

[Mamma1932]

I hope you have a fantastic stay here in our beautiful country!

[Heady in reply to Mamma1932]

Another South Africian, where are you? I'm in Franschhoek!