Better today

[jzygirl]

Good morning one and all. Thought I would share the good news. After starting the reduction of pd meds on monday Brian managed to get out of bed and transfer onto the glide comode with just my incouragement. A week ago it took 2 people to manhandle him out of bed. So it was big grins all round this morning. Let us smile while we can. Jxx

[NannaB]

Brilliant news. Long may it last.

Nanna B

[jzygirl in reply to NannaB]

With my rose coloured specs on I think there's more good news to come. Jxx

[peterjones]

jsygirl good on yer brian keep it up mate \\\\ and you as a carer jsygirl keep up the good work to\\\\\ peter jones queensland Australia psp sufferer its great to hear good news for a change

[Heady]

Hi Jzygirl, that's great news! Isn't lovely when something good happens. Savour it while you can.

I went to the hairdressers today, S normally stays at home alone, dared to move from his chair. Today, he came and sat in a cafe, the queue was far to long for me to get him coffee, so I left him to it(crossed everything I could think of). When I came back, he was happily sat there reading a paper, drinking his coffee. The first time in a very long time he was independant , you could see in his face he thoroughly enjoyed the experience. In S's case, it's all down to an excellent physio!

Can you imagine what we would have said, in our previous lives, that these little things, would have meant so much to us!!!

Lots of love

Heady

[goldcap in reply to Heady]

Heady, I can pictures him in my mind's eye enjoying his "personal time". These moments are everything! Thanks for sharing.

Best JGC

[goldcap]

So good! I'm still on the fence about it. He is down to 1 Sinemet twice a day. Keep us posted

[Hidden]

well done, which pd meds? We have had increased LDOPA (doubled dose level 5x/day 200 mg/dose) and it has helped stiffness a bit, but mobilitiy just seems to go down and down, more slowly now.

jmmb

[jzygirl]

Good morning all

another sunny morning here. Not only did Brian get out of bed (himself) & onto the glide comode I assisted him to wash and dress and when the carers came in he was sitting eating his breakfast grinning like a cheshire cat. Think I'm so supprised at how much he has improved since Monday. Long may it continue and last. Jxx

[jillannf6]

HI IZYGIRL

YOU AND BRIAN HAVE A LOT TO BE THANKFUL FOR1

ENJOY IT AS THE HEAVENS MAY OPEN AND IT MAY BE STORMY AHEAD

BUT 1 DAY AT A A TIEM IS THE MANTR AON THSI SITE ( NOT THT I CAN EVE RDO THA TIN PRACTICE)

LOL JILL

[Heady in reply to jillannf6]

Hi Jill,

You write a good story then! I had you down as an inspiration to us all.

Lots of love

Heady

[anniemay]

Here lies the essence of keeping on top of PSP -

1. see which medications have negative effects and cut them out

2. Keep muscle tone by whatever exercises can be done - lack of muscle tone = lack of movement = stiffening and pain in joints = less movement still!

It has taken us several years to get to this stage but now my husband Tom is better than 5 years ago!

Good luck all, Ann

[Heady in reply to anniemay]

Hi Ann, you are right. I'm sure S has had PSP for a lot more years than we know about. He use to do loads of hard and long exercise, until his "knees" started to slow him down, only after the op to replace one of them, did the symptoms really kick in. Even then, we kept loads away, by exercising his new knee. The falling had started by then and a couple of nasty ones stopped all the exercise and PSP came rushing into our lives. Of course, we knew nothing about what we were doing, but now, S is doing a lot of physio and is slowly improving. Unfortunately, I don't think I will ever get him back to doing any of the things we use to do, gets too tired, if I push him hard, but I'm sure if I could get through that, we could start doing a bit of walking again! I will keep trying!!!

Lots of love

Heady

[anniemay in reply to Heady]

Heady, you are right to be positive, its the only way forward, but don't push too hard (Tom gents anxious if I try to push him into doing anything, so I try to guide without appearing to!)

Also we try new things that we can both manage - I have filed the past in my mind as the wonderful time it was, can say 'been there, done that'. There is no room for 'if only', just what can we do today (and what will we put off til tomorrow). As Jill says, one day at a time.

love and best wishes, Ann

[jillannf6]

hi anniemay

i see where you are coming from and couldnt agree more

ann you are brilliant

;ol Jill

[anniemay in reply to jillannf6]

Just trying to work out what works best for us to continue with as reasonable life as possible as the health professionals just write us off. You are the brilliant one because you are working through the same problems and coping with psp.

best wishes, Ann

[jimandsharynp]

Wonderful, Just shows that meds can be as detrimental as the disease. Jimbo