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PSP Association
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Frustrated

It's been a tough week and tough day so over my cbgd everything hurts especially my face left side and stupid speech at leg freezing starting new medic I called azilect for my leg free time again left side has anyone had experienced here times where they simply can't speak thank you Sonia frustrated as

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Hi Sonia, sorry you are having a rough time. Hope the new med helps the freezing leg.

Not being able to speak must be most frustrating. Are you able to write down what you want to say? Or is it that the words don't come for you to think them? If you can write, keep a pen and pad beside you so you can write what you want to say.

If it is difficult to remember the words, talk to your Parkinson's nurse as she may have some suggestions how to make it easier. She may also suggest 'Dance for Parkinson's. My husband found this helpful for stiffness and he enjoyed the jazzy music.

Just happy music playing in the background at home might help you relax a little so you can think a bit better.

Hope some of these suggestions will help you. I know it is not much help but you need to find a way to relax, mood music, good smells, warmth, massage ?

Thinking of you!

Hugs

Jen xxx

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Jen I don't have a Parkinson nurse yet I can't write ugh now either due to tremors and hand locking physical I can't move my neck to the left I wish I could dance but thanks any way

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The idea of 'dancing' is to try to move with music, taking mind off act of moving. Can be done sitting down too! Idea is to have fun! Be among others like you and nobody asks 'what's wrong with you' but just accepts. Even I felt at home although I was different! Not being afflicted with Parkinson's. If you are offered the chance take it if you are able!

Hugs

Jen xxx

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And you can type and send messages!

Jen xxx

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So, sorry you're having to go through this. Try and find other ways of communicating, there was an app that you can download (can't remember the name, will see if I can find out for you) and should hopefully make things a little easier.

My husband is a doctor and he has always said that with his patients that freeze, they are asked to try and imagine they are stepping over something like a rope and apparently that works (they do this in clinics), worth a try.

Sorry I can't be of more help xx

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Thank you tried that lol silly girl I am and fell my muscles tighten then my left leg completely freezes my first day on azilect for my leg and it's made me sick all morning how ever I will persevere thanks kindly like said I'm so frustrated I've always been fit and pretty and healthy till Sept 2014 then everything changed

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Oh no, I'm sooo sorry. I hope it wasn't a bad fall. I'll definitely soak to my husband to see if he can advise something. Once again so sorry. I hope things improve for you xx

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Sorry to hear your new med made you sick. My husband had similar problems with Sinemet. Was sick and dizzy like being tumbled in a tombola, he said. So hope you are able to get back to Dr. He may have some suggestions or meds to help nausea.

Hang in there! Hope something can be found to help.

Big hug!

Jen xxx

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Dr. suggested we try the sinemet every two hours since it had such a short working time - so yesterday we did take it all day every two hours - my husband could barely stand by dinnertime - a little too much dopamine!?! We are not going to do that again today!!!!! It didn't make him sick just unable to walk~ tuff day - I've got him on his throne so far this morning - he seems normal, so far- fingers crossed!!!

Thinking of you, Sonia with your little guy🌻

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Changed to Madopar with fewer effects. One was increase in blood pressure spiking. Never fell at home but was watched in hospital as they found bp plummeted when he stood. They are all powerful drugs!

Take care all;

Hugs

Jen xxx

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My husband tried that at Rehab. Physio put tape lines on the floor. Worked well for a while.

Jen xxx

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Just put X's on the floor a few minutes ago - we have been using the blue painters tape but I've been trying to get it in his head to STOp then go again - he thinks he can cruise around the turns, still 😬 I think the way I had the tape was just showing the runway - 😖 We'll see today if my X marks the Stop and Turn works any better😄Enjoy your day, all ... My "while he's on the pot" break will end soon🙂

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Also found counting '1' and '2' and '1' a d '2' slowly for each foot forward. If leg won't go forward, just tap on thigh to point out one the patient is trying to move.

Happy moving and grooving I hope!

Hugs

Jen xxx

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I'm so sorry you are having such a hard time, Sonia. I can only imagine how you must feel.

My guy had good results for a time with a speech therapist who used the LSVT LOUD program, designed for Parkinson's patients. I loved the appointments, which I always attended, because the improvement was immediate and lasted for some time. We had exercises to do together, and played word games the therapist suggested. It didn't last forever, but every bit of good time was something snatched back from the disease and felt like a victory.

I wish I had more to offer, but do send my thoughts and care.

Sarah

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Sarah thank you yes at 47 it's tough tougher than I ever thought speech therapist couldn't do much with me now it's all about keep Me comfortable but the pain and leg freezing drives me crazy limited movement in my neck now and at times I completely loose my voice I'm still determined to care for myself as long as possible my hero is my son he's 9

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Sarah thank you kindly yes it's tough mum just stared through me today like a stranger she like my dad doesn't get me life is so different the world feels different now but my face has dropped alot and that's real tough having such a beautiful mum alot yup I want is a hug from mum but I can't reciprocate it back as I don't feel much any more

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Hi Sonia, My speech therapist made me a book with pictures of things I need for when I cannot get the words out or find the words to start with. I get less frustrated when I can use things like that instead of stuttering and losing my words. Maybe this would help you too .

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Thanks will get my my support person to help with this yes so frustrated as I said the silence drives me nuts

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Sonia,

If there is muscle pain from the CBD in your face, maybe Botox injections could help? Helped my wife who has pain in her foot from dystonia. Poor you - really tough with a nine year old.

Richard

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Thank you Richard my son is my hero sorry about ur wife's dysyonia yes it tough have internal epilepsy and lewy body's on top will investigate botox

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My husband hurts everywhere also. But he is still in early stage. When you said your face hurts on the left side so does his. Some days it does more than others, this has been going on for maybe a year or so. Sometimes it looks like a slight rash or puffiness in the face, Have been wondering if it goes with Psp / Cbd. Does your symptoms compare to his?

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Yes my face us real tight on on the left but the droop looks on the right side the puffiness is on my right side don't know much about PSP however my neurologist palliative doctor have been amazing my nurses and me have learnt from our own research I'm left side dominate so it's tough and my right side is slowly starting to be effected hope husband get feels better soon hugs I'm there baby patient at 47 my nurses and doctors had not even heard of cbgd it took a professor in movement disorder to officially diagnose me

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