do any caregivers witness a greater proble... - PSP Association
do any caregivers witness a greater problem with your loved one after someone comes to visit,Madeline is in stage 4,no speech etc etc.Rollie
Normansland.
I am very sorry because Madeleine is in that conditions, I am in stage two and I can imgine how do you feel.
Must be strong, if she doesnot need visites, don´t open door (of course is figurate sense)
I wish for you very luck
Guadalupe from Mexico City
HI I am in stage 2 as well = have been since my dxs in 2010 but my speech has got much quieter and more garbled and i have difficulty making myself understood and i am falling over much mor e than when i was dxd
burt i am GOOD for the most part and really enjoy having people come and see us - but i tend to get stressed and fall over b4 the visits and after
lol Jill
thank-you for writing,Rollie
Thank-you for writing Guadalupe,Rollie
Yes,- The highs and lows with visits and phone calls - Both emotional and physical state altered unfavorably.
Regards,
Alana - Western Australia
Thanks Sharon,Rollie
Thank-you Alana,not Sharon! it,s 4.30 am and I am up for the start of duty but still asleep,again thanks Alana
Why do they want to get up at 4.30? I keep telling my husband he is not a bird but he just laughs. Hope you manage a doze during the day. I have a sitter coming at 1.15pm so am going to have a sleep in the summer house then......bliss.
Nana,have a good rest,I too today get a nurse in for 4 hours...I get to run errands,c.u.Rollie
I hope you can find a bit of time to have for yourself,happy birthday,love Rollie
Hi Rollie, my husband is tired after visitors. He does like us to stay in the room with him though, so he can hear what's going on. Folk always follow me into the kitchen when I make tea or coffee when they arrive and I see him fidgeting and getting agitated through the baby monitor. If our visitor knows him well, family, friends etc I'll ask them to go back in with him and just tell him what's been going on in their life till I go in. If they don't know him well, I go and speak to my husband and tell him I'm making tea and will be with him soon. I always include him in the conversation....didn't we Colin, that's funny/good, isn't it Colin and he will put his thumbs up even though he looks asleep. Our visitors always follow my lead once they see him awake and will ask him questions with yes/no answers. When someone is due to come, or I want to invite someone, I always ask him first and he has never said "No". Thumbs always come up.
Best wishes,
Nanna B
Thank-you Nana,Rollie
I know this is an older post but where fid u get the baby monitor from that comes with a camera .what is it called please . I pedal ly would like one that' could monitor him I'm my phone as well . I already have a hive so that I can check temp of house while I am out and adjust as necessary
It is a Motorola Digital Video Baby Monitor. I couldn't do without it now. I bought it from the Internet but can't find the website but if you google it, you can see several sites that sell it. I'm sure Mothercare would also have one, or be able to get one if you don't order from the Internet. I don't know how you can monitor on your phone but someone might.
Thank you Nanna will look .
Rollie, What I found was that ANY visits or trips out took a toll on my wife. It might take her a day or two to get back to herself. Fatigue is a major part of the disease and a symptom you don't read much about. Probably not discussed because it's not a symptom that is harmful or difficult to handle as other symptoms. Jimbo
thank-you Jim,I hope you are getting along a little better each day,Rollie
hi normansland hang in there matey I shouldn't worry about what stage madeline is in rollie just take it steady steady and one day at a time I think you will benefit from this i try and forget ive got it i cant when i fall over and a few other things to get on with\\ but we are still breathing\\
and while we are I am going to enjoy every moment I can even though my face does not show that I am enjoying it give it a try rollie not the face part mate I know its a hard old road but you will get there with madelane a bit of sign language here and there my wife reckons she cant understand me which is just as
well I suppose at times \\ yet I can I know what ive said
anyway mate you take care of our girl madeline rollie and don't worry about visitors I try but I find that they out talk me until my wife says give him a go he been trying to say something
and don't let them finish ff the sentence for you or madeline i should say its like when people stutter and there is always someone who wants to finish the sentence for them which I think does not help them one bit see yer matey chin up from Australia to nova scotia best wishes to both of you peter jones queensland Australia psp sufferer but not a a fall for a week or so ===== SO hey didle thee dee its no more hospital for me \\ id better keep my mouth shut \\\
Hello Peter...thank-you,Rollie
hi normansland and madeline my pleasure mate see you have a drop for me\\ good luck to you both peter jones queensland Australia
Hey Mr. Jones - so glad you've been staying upright. My guy is going to have you beaten as cut-head expert if not in the bike race. He went over twice in one day and hit the same spot. Don't those scalp wounds bleed! He's okay, anyway. Takes a lickin and keeps on tickin. He had his first meeting with the LSVT therapist today. We have hopes that it will help him be more stable. Worth a try! All the best, EC
hi eastern cedar thanks for your mail sortry to hyear that mr c had a tumble mate i hope everything is ok with him now yes mate they certainly do bleed a lot the head wounds I know my daughter was working up until 11-30 just getting the blood off of the carpet it seemed like there was gallons of it there but of course we only have 8 pints \\\\ but I was a bit put out because it was not blue but never mind I got over it I liked very much your saying of''takea lickin and keeps on tickin ''excuse my ignorance but what does l s v t stand for long short vertical therapist anyway I hope it does him some good I do not want a half hearted bike race matey i want 110 per cent out of him because i know he can give it GO GO GO MR CEDAR TAKE CARE MR C IM WAITING FOR YOU
PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER
Dear Mr jones, the reply below is for you. Thanks for writing, and stay on your bike! Best, EC
Dear mr. Jones, LSVT Big is a physical training program designed for Parkinson's . Lee Silverman Voice Therapy is what it stands for. Originally it was just for speech therapy, but has been adapted for physical movement. You go four days a week for a month, and the goal is to retrain your brain to think that big and fast movement is your normal movement, to combat the bradykinesia, the slowing and shrinking. There are lots of videos on the internet showing the exercises. They are pretty rigorous, but the therapist was optimistic that it will help. (Not that he knows anything about psp, of course.). The therapist says he wants 110% all the time too, so we're all on the same page. We will give you a proper bike race!
hi eastern cedar thanks for the update mate I think have been doing this exercise for the last 6 months matey with my balance class every time you do a movement you shout out the word'' big''
if its the same one its designed to help your voice as well by shouting out the word big on every movement when your walking its supposed to stop you shuffling along and taking bigger steps
if its the same one of course I do not remember what ours was called only that blooming word\\big\\wait a minute I can do better than thisBIG I D BETTER NOT GO ANY BIGGER I MIGHT JUMP OUT OF MY BOX \\\\\ THE ONE IM WRITING IN MATE NOT THE OTHER KIND OF BOX I SHALL BE IN THERE SOON ENOUGH \\ BIT IOF A WASTE REALLY IS'NT IT YOU BUY A DECENT BOX TO GO OFF IN BUT IT GETS BURNT AT LEAST I THINK IT DOES \\\
AH WELL THINGS THAT GO BUMP IN THE NIGHT IVE DONE THE MORBID BIT NOW ON THE HOME STRETCH MRS C KEEP HIM IN TRIM FOR THE BIG ONE MRS C BUT I MUST ADMIT I HAVE NOT BEEN ON MY BIKE FOR A FEW DAYS WITH THE CARPET GETTING FLOODED AND THEN VANITY UNIT GOING TO PIECES ITS VERY STRESSFULL IF YOU LET IT GET TO YOU SEE YER MATES HANG IN THERE MR C ALL THE BEST TO YOU AND THINK BIG ITS THE ONLY WAY TO GO \\ IF MY SPACE IS CUT DOWN ANYMORE I DONT KNOW WHAT ILL DO I HOPE IT DOES NOT COME OUT IN AN EM YOUR END THIS SISE
MATE FORGIVE THE S WONT YOU THE SAME TROIUBLE PETER JONES QUEENSLAND AUSTRALIA PSP\\ FIN\\
Yes! That must be the same program. The therapist says we'll get sick of the word "big" before we are through. Sorry about your water damage. Keeping a house together can be stressful, for sure. I've been waiting for months for the contractors to come back to fix my outdoor steps, which are falling apart and need to be upgraded for mr. C. And the bathroom rehab guys went away to draw up the plans in March, and that was the last of them! I'll be glad to tell mr. C that you are doing the same program on the other side of the planet. It will spur him on, no doubt! Thanks, mr. Jones. See yer! EC
Ron did the same program here in Texas. He also has a Dynavox, but what really works for us now is a one sheet alphabet page. He points to the letters and spells words. This goes along with the visitor question because Ron loves visitors. He asks for people to come see him. I think he is tired of me though because the other day he spelled out, "I think your stories are cute, but quit." I had to laugh.
Hello Rollie
Yes we are experiencing the same thing. Mum has very little speech also. We seem to be getting Jekyll and Hyde. One day lovely and calm next day or even hour a raving aggitated wreck grabbing both her 1:1 carers and her family with strength of an ox.
Seems to be directed at her family the most. I went yesterday and the first thing she said was "'wrong mother" so I think she knows herself. She grabbed my little boy's arm really hard hurting him and would not let go. He is only six and was upset so we had to leave.
