Riggetness

[Tttp]

Had a rough day with my brother his one leg has been rig get for a long time now but now it is in his other leg he could Hardley move finally got him up and he fell sideways into me and we both went down, thankfully I had his helmet on him so he was ok. It's going to be very hard very soon with him it's like his legs and feet just freeze up. Anyway just feeling sad today.

[easterncedar]

So sorry for you and your brother. I'm sorry you are feeling sad. The stiffness makes everything so difficult, I know. I guess the falling isn't new for you, if you've got the helmet. I hope you weren't hurt! I was about to get him a helmet, but my guy doesn't fall so much anymore, now that he doesn't stand up on his own very often and he is almost never left alone for more than a few minutes. We stagger about together quite a bit, though! And I'm glad we can still do that.

Write again, please. Tell us something about yourself and your brother. And hang in there. We are all in this together. Love and peace, Easterncedar

[Tttp in reply to easterncedar]

Hi I wasen't hurt that I would!nt need with my brothers one leg being so bad I was afraid it would go into the other I guess it was just a matter of time, thanks. Nettie

[NannaB]

Hi, it is sad especially when they slide a bit further down the slope. Well done for getting the helmet but don't forget to think about protecting you ( says me who is at the moment wincing with pain from a dodgy back). Do you have a handling belt? It's a good piece of equipment befor hoisted etc. It gives you something to hold on to. It helped me a lot.

Try and do something nice today, invite friends round if you can't get out or talk to someone who you know will make you laugh.

Sending you a great big virtual hug.

X

[Tttp in reply to NannaB]

Thanks Nanna, I do have a handling belt, but half the time I just take hold of his pants. I don't have my brother today so been painting have to keep busy all the time. Thanks for the hug I needed that. Nettie

[NannaB in reply to Tttp]

Painting woodwork or pictures?

[vlh4444]

Sorry you had such a bad day yesterday. It is so difficult when the legs and feet just won't move. We also found a handling belt useful at that stage. We don't have those problems now as D is in his wheelchair all the time although he can still take the weight on his feet while using the hoist to transfer to the armchair or commode chair.

Do be careful of your own safety. Hope you have a better day today. At least the sun is shining - here in Kent anyway.

V

[Tttp in reply to vlh4444]

Hi having a better day just a lot going on besides my brother he is in a wheelchair but likes to get up and takes a few steps but yesterday the legs and feet were froze up, amazing how this disease is things just creep up and it's a new problem I handle it pretty good most of the time, my sisterEn law does plenty of course but I have him a lot to at least there are two of us. Nettie

[millywigg2]

Aww so sorry for you both,its such hard work for us all.My husband used to wear his old Ski helmet before we got the stair lift,saved his head numerous times.We have a wheelchair for transfers now and a commode chair,thats great.We still use the handling belt,its sooooo useful.We were up 3 times with choking episodes in the night,getting horrible.At least its sunny again and i am walking the dogs to have their summer hair cut.We all have very sad days,as life is so surreal.Take care of yourself.xx

[Tttp in reply to millywigg2]

Hi sounds like your husband and my brother are about the same now, yes a lot of hard work but well worth the hardships with this horrible disease my brother chokes a lot two so scary at times. Have a nice day out in the sunshine with your dogs. Nettie

[Heady]

Hi, we all have sad days, when this evil disease gets on top of us!!! It's just another fight with PSP, this one, we should not let it win!!! Glad you felt able to share your feelings, it what we are all here for, to support each other on this journey!

The handling belt everyone is talking about is a good idea, but just a normal belt, or the back of his trousers will help enormously, for those tricky moments. When handling my husband I always look for the softest place to "throw" him, if I know he is going down, to avoid me joining him. That is easier now, as most movement are transfers from the bed or arm chair to his wheelchair.

Hope you have a better day today.

Lots of love

Heady

[Tttp in reply to Heady]

Hi Heady having a better day this darn PSP gets to me at times. But it gets to all of us I know all we can do is carry on, thanks. Nettie

[Nanny857]

Hi, sorry you are having a difficult time and feeling sad, so sending you some virtual flowers and hoping today is better. 💐Much love, Nanny 857 x

[Tttp in reply to Nanny857]

Hi Nanny thanks for your caring a much better day. You have a good day. Nettie

[Nanny857 in reply to Tttp]

Thanks, we had a good day, went to our local PSP support group meeting in the afternoon which W enjoyed as did I. Nanny857

[NanBabs]

Oh, the ups and downs of this evil illness ! More downs than ups it feels like sometimes.

Yesterday we sat in the garden of P`s nursing home along with several residents that we haven`t met before (because they are upstairs) and P and I stayed outside longer than everyone else because each time I asked if he was tired or wanted to go inside he said (or indicated) that he would like to stay out in the garden. We all had scones and soft drinks or tea and sat under sunshades.

At one point he whispered `we are lucky`. I`m not sure if he meant that we were lucky to be out in the fresh air or because of the home (he has said before that we had found the right place). Either way, it was music to my ears - yesterday was definitely an "up" day.

xx

[mthteach]

Is any of your loved ones still taking Levedopa. Is it a high dose, or does it still help some.

Tttp, we are all in this together, so you feel free to vent anytime on here. The more we stick together and pray for each other, the better off we all are in the long run. xoxo

[Amilazy]

If he can still stand and hold on to a bar may be worth asking your OT to try a "Sara Stedy" it is a very good machine for moving patients about the house without hurting your back. Also it will give him exercise in standing and sitting without risk.

Best wishes Tim

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My husband is starting to cough at night but not choking. What do you do about the choking? I am frightened of that.