PSP Association
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Muscles painfully rigid

Hi Folks

Well, Liz didn't get he birthday party at home today. I got a call from the Nursing Home saying Liz had suffered a muscle spasm and had gone to bed on obs.

She has never had these before. Reportedly she was in her wheel chair and her whole body became straightened and rigid for some five minutes. Liz later said it was like cramp and that it was very painful.

Questions:

Will these happen regularly now?

I see from old posts that baclofen 10mg is often used for this, does anyone have experience of this or other meds?

Liz will have a visit from the GP on Tuesday.

Any help gratefully received!

Thanks

Kevin

PS her girlfriends abandoned their journey, but texted love and hugs and that they would do their best with the chocolate mousse. They take no prisoners ;)

Warmly

Kevin

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Kevin,

Argh! On the day of her party! Please give Liz our "virtual" happy birthday's--hope the rescheduled party will be great.

Hope people here have some good advice for you.

Lost

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Thanks Lost

I shall :)

Take care

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Oh, poor Liz. Cramp is so painful. I hope they can relieve it for her.

What a disappointing day.

Big hug Kevin from Jean xxx

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Thanks Jean - It's all really horrid!

Hugs back to you :)

Kevin

xx

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Sorry darling I don’t have any advice on this but I do hope Liz is a bit brighter now

Please send my love and birthday wishes

Hugs x

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Thanks Amanda

She's a little frightened right now.

I will pass you love and hugs on to her. She will like that.

XX

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Hi Kevin, sorry to hear that you have to abandon the birthday party. My Mary is constantly rigid and I have to use almost all my strength to bend her legs, get her to sit down or open her legs to adjust "products". Thankfully it does not hurt her but I suspect it is another unpredictable stage. Because she is not uncomfortable we have not gone down the medication route.

We wish you well and hope it is a temporary aberration and does not become the norm. Rob

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I posted elsewhere that I just this week reintroduced Carbadopa/Levadopa 25/100 3X per day. It has helped with my husband's severe rigidity. I could hardly get him into his stair glide chair or to get into bed. My arms would ache with the effort to get his legs to bend at the hip. Not now. I'm going to play with the dosages to see if more helps. Oddly, he also made more of an attempt to speak.

Best wishes to you and your loved one.

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Thanks Hubetsy

This is good to know.

I'm so glad its working for your husband. :)

Best to you both

Kevin

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Thanks Rob

I'm sorry to hear how stiff Mary is.

Have you tried CBD oil?

Best to you both.

Kevin

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We tried CBD oil which relaxed her but didn't reduce stiffness. In the end I administered it before she went to sleep and she benefited (so did I cos my sleep was also undisturbed). Will get some more but not until after our CHC assessment on the 29th. Regards Rob

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What a disappointment for you both especially Liz and oh those chocolate mousse, joking aside hope you can find some sort of medication to help Liz. Yvonne xxxxx

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Thanks Yvonne

Yes, I'm hoping it is a one off. The GP is coming tomorrow and I will ask her to consult with the Neurologist.

I think some of her friends are coming up next Sunday.

Chocolate mousse will be a requirement. ;)

Wishing you the best

Kevin

xx

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Oh Kevin what a shame, Colin was having rigid episodes, his body would be stiff but also shaking, this was just before he went into the hospice, they started him on baclofen, which has helped, he was in the hospice for nearly 3 weeks, he doesn’t go so rigid now.

They have also started him on sinimet the day he come home, this is where I am seeing the difference, his movements are so much better, the pain is calming down and he feels so much more comfortable.

Love and hugs to you both I hope something works for liz.

Helen xxx

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I’m happy you mentioned the Sinemet. We had Dan on it a long time, many different doses. I felt it had no benefits until one of the doctors suggested that taking him off may have contributed to an increase in rigidity.

I find it is a bit trial and error, but putting him on a small dose has seemed to slow down the progression of the rigidity.

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Leon was on sinemet, it caused major spasms, took 6 weeks to wean him off it, but it did more damage than good

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Thanks Marg

That's so helpful. Reading the posts here it does seem to be a win or loose sort of medication.

Waiving to you

Hugs

Kevin

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Hi Helen

I'm sorry Colin suffered so.

Your post is really helpful.

Thanks

Kevin

xx

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Thanks Karyn

This helps.

I am so nervous of the potential side effects.

Best to you

Kevin

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I generally only give it to Dan once a day...in the morning. I give it to him on an empty stomach and wait a minimum of 30 mi utes to feed him. I give him 2 tablets which are 25/100. He’s a big guy. He was prescribed a dose of 3 tablets ....3 times a day.

I took him off recently to try CBD oil. After a few days the rigidity escalated quickly. I noticed it mostly in his inability to hold his head up. I have experimented several times with the same result. If I showed you a photo of him with and without the drug, it would be obvious in the way his head drops to the side.

His legs remain rigid making it difficult to dress him. His back is also rigid making it difficult to get him out of bed. He is able to use an electric sit and stand. It’s fabulous, but a struggle for both of us.

I am so sorry Liz was in such pain, and that her wonderful plans were ruined. It’s just crappy.😢

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A few years ago I used to get alot of cramp, in my calfs , some nights I didnt want to sleep in case the cramp started...

I don't know if it's any thing like Liz is now experienceing,, each day I took a small glass of Indian tonic water. Not something I liked the taste off but it worked for me , its not a medicine but who knows it might work ...wish liz happy birthday from me....Brenda xxx

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Tonic! ....Quinine?.....

I knew there was a good reason to keep that gin still going! - Kevin, get back to the shed!!

😉

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Yes. I have gin and tonic - purely for medicinal purposes !!

xx

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The trouble is that it takes such high doses!

But I try to keep up the regimen.

:)

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Thanks for the chuckle - :)

Yes, I must up the output :)

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Sometimes we just have to suffer, Kevin !!!

xx

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Hi Brenda

Thanks - really interesting. I googled it... It seems to be quite the thing.

Definitely worth a try.

I will pass ion your birthday wishes. Liz misses being able to take part here.

She will like that.

Warmly

Kevin

xxx

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I am sorry that Liz had to forgo her party hopefully it can be rescheduled when Liz is feeling better. Cramp is so painful and I hope is is not something that is reoccurring. Both of you take care. Love Jxx

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Hi J

Thanks, yes the B'party might be next weekend.

The problem is that it was a neurological episode, but it felt like cramp. Sorry I didn't explain it so well.

Warmly

Kevin

xx

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Leon never had those episodes. Did have cramps though. Hope Liz still gets to enjoy some chocolate mousse

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This Sunday some of those friends are coming back.

The mousse will be an entry requirement.

:)

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Kevin,

It's a damned shame that Liz's birthday party has to be postponed. Happy latest 29th birthday anyway!

With regard to musvle rigidity, my old h bete noir. Cariosodopol, or Some, is the most potent of muscle relaxants. It's potential for abuse is scary even to me

Used to see "Some comas" where the youth used to escalate the dose and become invertebrates. It has a really bad reputation among physicians here as a consequence. Nothing else I have tried is nearly as effective. Benzos can help because they provide relief for both rigidity and anxiety. The problem, again, is reputation and perception. Liz is dying. Any concerns about dependency are highly personal and not the bloody government's remit. Rest assured, however, that necessity bows to convention every day. Look to the experience in Portugal my brother. Just makes too much sense...

I will step down from my soapbox now. Wish I had more constructive suggestions for you. In the absence of such, than a for allowing me to rage against the machine a little. It helps somehow...Special birthday hug to Liz.

You bat-shit crazy brother in arms,

Steve

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Brilliant, Steve.....

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Thanks raincitygirl. I try... daily. So much like how one eats an elephant...

One bite at a time. Peace and love 😎

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Hi Bat shit crazy and lovely Steve :)

That is such good info. and wise advice.

Thanks

Warmly

Your very normal stiff upper lip Brit

Kevin

C/O the side ward.

:)

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P.S. Baclofen has its proponents. Hasn't helped me in the past. Siminet qid helps. Good hunting

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It occurs to me that my new phone believes that Soma is Some, and doesn't even want to even discuss Sinemet, which I take four times a day and which helps with trembling on my once productive hands. It certainly doesn't hurt...

Cheers to you both. You are loved

Stevr

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And you are loved here too!

I would so like to hear your thoughts on life. I keep getting glimpses of a well honed wisdom.

The way you cope with this illness is testament to someone who loves life and lives it. It's affirming to me too.

You are a wise man... (but nicely a little bonkers too ;)

I hope we get to meet one day.

Your bro'

Kevin

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If it is to be, it will my brother.

Thanks for your encouraging words. They help me feel like I am not whistling past the graveyard.

Hugs and peace to the both of you mate...

Your crazy Cajun bro,

Steve

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You seem to be a support to so many on here, Kevin. It is so lovely to see the care and concern people have for you and Liz in return.

Hope the coming week brings belated birthday blessings!

Juliet

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Totally agree Kevin, you have been a major support to me

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Hi Juliet

I am very touched the way you and the others have rallied around.

This is a forum of wonderful people.

We're going to try again for a smaller party this Sunday.

Thank you

Warmly

Kevin

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Dear Kevin,

See my post from last week. Charles had an "attack" just like Liz. And another this last Tuesday. I think it is the future.

Baclofen was discontinued for Charles and that's good. The side effects weren't good. But each person is different. You know. Right now I'm wild because his coughing hasn't abated and seems not going to.

Cuttercat

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Oh, Cuttercat

I was so hoping that the coughing would stop. Seems like you got it diminished though. Wonderful.

Thanks for the warning on the side effects. I think we might need to avoid this and sinemet until it is really necessary.

Best toy you both

Warmly

Kevin

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I have a question--could the excitement of an "event" influence the brain chemicals at all? A while back someone posted that their partner behaved so differently for strangers than alone at home, and someone responded that the adrenalin response to the visitor was what perked them up; and that their worse behavior at home was because they were so comfortable. Is it possible that this could be some sort of response to "positive stress" of a big event? Just an idea. Love to you both.

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Aha! Lost

Great thought. I hadn't considered this.

When Liz is a little 'out of it' and tired and she is in a 'mood' I have had to explain what she is doing to me by raising serious concerns and then 'switching off'. (She has raised very alarming issues like this which thankfully were not the case). There is a bit of an adrenaline burst and she becomes very alert.

It's entirely possible that the excitement brought this on.

Thanks

Warmly

Kevin

xxx

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I believe what you posted. It seems they are more comfortable with the ones they love and lash out. Fear on both our parts.

Cuttercat

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Yes!

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Interesting thought. Makes sense to me !!

xx

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Oh darn, Kevin!...Liz didnt get to see the renovated pond underway?? 😒

Sorry I have no wisdom on the drugs - will just offer best wishes and hugs to you both and hope Liz makes it home for a visit soon.

Anne G.

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Hi Anne

She will see it later this week.

I will post a photo of her with it.

:)

Waiving

Kevin

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Hi Kevin

Haven’t experienced this yet, only got cramp when on statins. Sometimes get it in toes. Have heard the same about tonic water( quinine) think I’d sling a gin in it too!🍸Hope she gets her party this weekend.

Best Jaynexx

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Hi Jayne

Apparently the gin makes the tonic water more effective :)

As you might see Liz and I have had a long heart to heart and she has put a post together near the end of this thread explaining that it wasn't muscle spasms at all. but frustration.

Now I do need a gin and I think my cat wants a catnip juice. She says supporting me and listening to all of my woes does tend to interfere with her cat naps.

I hope to bring her home tomorrow and she is having a smaller party on Sunday .

Warmly

Kevin

xx

:)

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So sorry to hear Liz missed her party. Sounds like a horrible experience for her ( and you)!Hope you can find something which helps and she can get home soon for a little celebration

Please do pass on birthday wishes

Love Tippy

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Thanks Tippy

I must admit I am very anxious about this development.

I will pass those wishes on

She will like that.

And she always wants to know he who and the what about folk here.

Warmly

Kevin

xx

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So sorry to hear the party didn't happen this weekend. Hope Liz is feeling more relaxed now! Ordinary cramp can be bad; guess that rigidity must have been scary for Liz!

Happy a birthday, Liz! Hope your friends have another chocolate mousse for next weekend!

Hugs to you both

Jen XXX XXX

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Thanks Jen

Yes, chocolate mousse next Sunday. :)

I'll pass on your Birthday greets to her.

Wishing you the best with your journey - You are never forgotten here :)

Hugs

Kevin

xx

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I am so sorry...........................

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Thanks Margarita

Yes, all a bit anxiety provoking right now.

Warmly

Kevin

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So sorry to about your Liz' struggles. Hope things ease up for her and you.

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Thanks hubetsy

Wishing you the best with it all too.

:)

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Kevin, hopefully she will go over the pain for the muscle spams then she will be ready to celebrate her birthday.

Hugs

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Hi Patty

Yes, it was a horrible thing. The care lead told me the stiffness event lasted a full five minutes.

Liz was quite frightened by it too.

I sat with her with some music on until she settled.

Yes, birthday party next Sunday. :)

I hope your husband is doing OK and that you have got a bit more clarity about his diagnosis.

Warmly

Kevin

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Thanks Kevin for asking. After three months we finally saw last Friday Dr. Padraig O'Suilleabhain, who is a neurology specialist in Dallas, TX. He officially diagnosed David with PSP. It broke my heart even though I was quite prepared for it. Now I just have to be brave and face it.

Our son, who is 22 has been a great company and support.

Dr. O´S invited David to participate on a trial but as soon as I have the information I will post it here.

I wanted to post a picture of our anniversary but I couldn´t.

I will celebrate Liz party from here with a glass of wine. Salud.

Warmly, Patty

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It seems that even with the incredible knowledge you have and all the wonderful and informed people here, nothing is easy to predict with PSP.

I hope Liz is not anxious about this terrible event recurring. I hope she’s able to celebrate with friends and toast to kicking PSP in the ass.🤗

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Hi Karyn

Well that's PSP for you!

When looking into this it became quite clear to me that the best resource were the folk here.

And I was not wrong. The advice and information in this thread has been great.

Yes, Liz was a little frightened yesterday. Hopefully she will be a bit better today.

I'm just off to see her now.

Yup, the only attitude, 'Kick PSP in the arse!'

Waiving

Kevin

:)

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Sorry to hear about Liz. Hope she is better now and you can have a belated party for her. Not come across this. Xx

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Thanks Pauline

I think I filter a bit.

There have been posts on this which I didn't reply to because it was outside what I know or have experienced.

Suddenly it's us dealing with it.

This thread has helped enormously.

Folk here are great!

Kevin

xx

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So sorry to hear. Saw the addendum about it being neurological. Hard to say what the brain is doing. Hope the party happens next weekend.

Best wishes to the two of you and a big hug to Liz for her birthday.

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Belated hugs for Liz's birthday

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Sooooo sorry. Hopefully this was a one off and Liz doesn't get any more spasms. Hope she gets LOTS of chocolate and she can enjoy her Birthday.

xxxxxx

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So sorry Kevin, we never experienced rigidity of the whole body. In the clininical trial John had to continue taking carbadopa/levodopa, perhaps this is the reason for it.

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Hi, Kevin_1!

My sister has this type of problems from time to time, but not in the entire body, mainly in the legs. The drug she takes is Meloxicam. You will need a GP advice. Good luck and big hugs for you and Liz.

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Oh Kevin, how disappointing for you both! Yes, hopefully the GP will have something to help.

Let's hope next weeks celebration will be just as grand!

Hugs to you and the birthday girl,

Alice. 🎂

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I am so sorry for Liz and her cramps. I know they can be brutal. Although this suggestion does not get to the cause, we found a rub with pure magnesium oil seems to relieve the pain. I just got it from a health food store here.

Add my wishes to all those around the world to Liz for her birthday.

Christine

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We too used the liquid Magnesium oil, it did help a tad with pain and cramps

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Hi All

I have just had a call from the Nursing Home

They have baked Liz a cake and are throwing an impromptu party for Liz... Got to rush... They are waiting. :)

Thanks everyone for the warmth and info and support.

I feel supported and a lot more informed.

Hugs to you all from the bottom of my heart.

Kevin

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I'll be interested to know what doctor says.

CT

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Hello all

I'm Liz. I am sitting with Kevin in the garden at the Nursing home. We are talking through hand squeezes. He is typing.

Kevin has read all of your posts out to me. Thank you for the warm well wishes. This forum, you folk, have helped Kevin and I enormously over the years. Thank you.

I hate what PSP has done to me, my life and my loved ones.

My mind is still clear. I have opinions and views, but I am unable to speak, eat, or do my own personal care. The latter is so humiliating. Though I am grateful for the care I get which is mostly very good.

I can only communicate if people stop and make time. Mostly they are too busy and give me a cheery word before rushing off.

I feel locked in and sometimes the anger and frustration gets too much. Yesterday I just wanted to scream in protest against the illness and my situation. I stretched my body taught to feel and express the pain I feel inside. There is so much of it. It wasn't a muscle spasm. I could not explain that yesterday.

There isn't much to look forward to with PSP just precious love and a hope to get home once in a while.

Thank you for being there.

Hugs

Liz

XXX

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There's a painting by Eduard Munch called The Scream. It epitomises how I imagine it feels to have PSP

Happy Birthday.

Love from Jean xxx

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I read you post to Liz

She sends a thumbs up and a smile.

:)

xxx

PS The roller-coaster!

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Liz,

Remember you are loved. Kevin is a brilliant fellow and much if a brother as I have ever had... I am here for you although recent events have driven me away from the forum, please know I care and that you are never far from my thoughts and prayers...

My wife, Lisha, has tremendous potential in the modeling industry. One of my fondest wishes is that the winds of fate will bring us to London soon, and that we can spend some time with you and that daft, sweet man who loves you so much.

Hugs to you. My regards to my relatively sane brother.

Sincerely, Steve

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Bless your heart Liz x

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Kevin has told me how wonderful you are.

Thank you

Waiving

Liz

:)

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Lol Liz! I think Kevin was talking about himself! He is the wonderful one!

Hope you are feeling a lil brighter now x ❤️

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Oh. Liz & Kevin, You have just echoed what Leon would have said. It is an incidious illness which I nor he would wish upon anyone. I feel so, for you. The part where people just pass by and don't give you the time resonates so much. Unfortunately people are in too much of a hurry now. Leon's brain was so so good. He would remember things that I had to do and tell me prior to my leaving him for the day. I spent the last 10 days sleeping, or was it sleeping, beside him in Borella House, which became his home for the last 4 months. He is now free to watch his beloved horse races, and hopefully will know I am there too, at least in his heart. Love and Hugs to you both xxoo

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Hello Marge

I'm so sorry for your loss.

Kevin reads your posts to me.

Thank you and we are both thinking of you.

Liz

Xxx

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Massive hugs to you both xxoo

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I know what you mean about the frustration. When you’ve been so able and active it’s like someone is playing a cruel joke and you hope they are going to turn round and say so. The last few weeks have been so unpredictable with legs becoming weak sometimes and finding it hard to lift out of chair. I am using my stick more and more as people look and think I’ m drunk! With the stick they are a bit more sympathetic.

Enough of me. Hope you have a wonderful party-eat lots of cake and have gin on me!🍸

Big hugs to you both

Jayne xx

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Hello Jayne

I'm so sorry you have this awful illness.

PSP sucks doesn't it? Even in this later stage my mind is still active when you get there it's really important that the carers get to know you while you can speak. You might want to make some some brief recordings, by heading, that can be played later. Headings might be food food choices, clothes, values and beliefs. Just things so they get a sense of the you who will be there.

At my stage life can be boring. Too much time to think and not being able to do things. It could be worse, L am loved and fully conscious.

I wish you the very best with it all.

Love

Liz

Xx

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Hi Liz

Thanks for the advice . The worst thing for me is they still can’t give me a proper diagnosis. Still, seeing consultant next month so he might do some more tests. I’m waiting on the research boffins on th e ‘ pippin ‘ project to let me know if I’m a suitable candidate.

I get so frustrated at home seeing things that need doing and not having the strength to do them but still have my marbles!

Lots of hugs and best wishes for your journey too!

Jayne x

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Thank you Liz and Kevin for sharing how I would imagine my Mum feels if she were able to communicate.

You were able to show how you are feeling and I hope now the care staff will give you the time you need so the frustration is lessened for you somewhat.

Much love to you both.

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Hi Spiralsparkle

Kevin has told me about battles with CHC. I wish you the best with it.

Love

Liz

Xx

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Beautiful, but so so sad at the same time. Belated happy birthday wishes to Liz and hugs to you both.

xx

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Thanks Nanbabs

😊

Love

Liz

Xx

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Oh Kevin,

So sorry to hear of Liz’ condition.

Unfortunately I’m unable to share any experience on body cramps, but I’ll be interested to know others experience of it for future reference.

I can only send you some love and hugs and a happy birthday to Liz.

Mx

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Thanks Megabrew

As you can see (the post just above yours) It turned out not to be muscle spasms, but frustration and anger.

It took two hours to write that post. A very therapeutic two hours for both of is.

The PSP roller-coaster.

Kevin

xx

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Liz, Thanks for the beautiful words. My love, Patty

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Liz was very touched with your post... She was too tired to tell me what to write.

She smiled... Thank you for that gift.

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Liz, probably too late for Kevin to pass on this message but I want you to know how much he honours you by keeping "you" in his posts and presence on this site. So much that I feel as if I know you! I wish for a cure for you - realistic or not. You are so brave...and clearly very very loved.

Hugs and H. B. to you 🌟💥☀️🌈💖

Anne G.

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Hear, hear...

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Hi Liz (and Kevin!), so pleased to hear from YOU! Glad the cramps are understood, if not 'resolved'! Hope you can find a less scary way to show us how you feel next time!!!! We all understand just a little bit how you must be feeling.

Have just posted for Jillann. We MAY gatecrash your party on Sunday!!! I need to know what time you start as I don't want to arrive in the middle of the night and spoil your beauty sleep!

Am looking forward to my glass of wine!

Love and hugs across the miles!!!!

Jen xxx xxx

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Hello Jen

I remember you well 😊

Kevin told me about your loss. I am so sorry.

This damned illness is so frustrating, but at least I am loved by Kevin and family and I can still love back.

Love

Liz

Xxx

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Hi Kevin. So sorry to hear about Liz and I have no advice to give, never happened to hubby. Hopefully it was a one off. Thinking of you love Maddy x

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Thanks Maddy

I hope the world is treating you well.

Warmly

Kevin

xx

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