Good news for the future?

[Marie_14]

Dear all,

Christine's post reminded me of something I had read. It appears in Cambridge UK they have decoded the molecular structure of a substance that is a hallmark of Alzheimer's. They have been able to see the make-up of a destructive protein called TAU in microscopic detail.

This surely means a big step forward for PSP? They are talking about drugs which would prevent Alzheimer's in future. Surely that would lead to a drug to stop PSP? Or am I being too hopeful? They have always said a treatment or cure would come via research into Alzheimer's. Fingers crossed they have started on that road. Although goodness knows how long the road is.

Marie x

[Heady]

One day Marie, one day. Although the only problem with that is, nature will find something even more horrible to bumb us off!!!

How are you doing?

Lots of love

Anne

[Marie_14 in reply to Heady]

Anne

You are probably right? We have to live in hope though or what's the point?

I am OK. Lonely of course. I haven't been brave enough to go on holiday which I really should do. Don't fancy going alone though.

How are you coping?

Marie x

[Heady in reply to Marie_14]

I have booked a holiday through Just You, it's for people who want to take solo holidays. Going on a river cruise around Bordeaux, mid August. After booking, I found the company had a forum, so went on and have already found another two widows, booked on the same holiday. This is also their first trip. So we have arranged to meet the night before we fly, for dinner. Suddenly, it's not quite so daunting. Starting to look forward to it.

Also belong to the Jolly Dollies, nationwide group for widows. Several members of our group have been away twice since I joined, to various places. Arranged before I joined, I will definitely be interested in the next holiday they organise. We meet regularly and take part in loads of different events. Thursday, we met in a local pub to watch the Morris men dancing. Next week we are having a picnic. Not all necessarily my cup of tea, but it's getting me out. Check on-line for your local group.

It's not taking away the loneliness, but it is filling a little gap.

Lots of love

Anne

[Marie_14 in reply to Heady]

Well I will check Anne but the only thing I have found is a group called Widowed friends. It meets twice a week for coffee. I was going to go on Friday but turned off the alarm and went to sleep again! I have this vision of about 2 people there.

Must look up your Jolly Dollies although I am not very jolly at present!

Glad you have made contact with a couple of people going on your cruise. As you say it won't be so daunting. I think you are doing very well.

Marie x

[Heady in reply to Marie_14]

Who needs to be Jolly to find friendship. That's what the JD's are about. We are all ages, all reasons why our husbands have died. One thing you will find with all these groups, you ain't alone!!!

As for doing well. Just hit the brick wall again, it f.......... hurts every single time. I hate Saturday's, come to that I hate Sunday, Monday, Tuesday, Wednesday, Thursday and Friday.

Lots of love

Anne

[Marie_14 in reply to Heady]

Well in my experience people don't want to know you unless you are a happy soul. It's different on here where we have all gone through the same thing.

Found a group near me but the way I am going it might take me another few months to join them! Can't even get out for a coffee!

Looked at the holiday site too but they are expensive? Mind you, you do meet others in the same position? Should have gone to visit my brother but can't cope with such extreme heat. He rang me today and he said it was 38 degrees and he is not looking firward to August as it gets even hotter then! Maybe I should go in October? He did mention his in-laws are going then though! Seems you have to book months in advance! 😊.

Marie x

[D0ttieL0ttie in reply to Heady]

Take Care lovely Lady xx

[Marie_14 in reply to D0ttieL0ttie]

DOttie LOttie I will never forget people who suffer from these conditions. I wish I was a billionaire too but sadly I am not. However the more all of us know about these conditions the more we can educate others? Including the doctors sadly!

I just want young people whose bodies are going to go wrong in future to have a treatment which will hopefully stop it in it's tracks. Or at the very least a treatment which can control it just as diabetes is controlled for example!

My poor husband died from this or MSA, maybe both? There have been too many nice people who have lost loved ones and too many who have suffered. I just can't walk away and ignore it.

Hope you are well too lovely lady?

Marie x

[Marie_14 in reply to Marie_14]

Well I went for coffee on Monday! Also took my passport to have it renewed! No plans to go anywhere but couldn't without a passport? So when it arrives at least I will have one less excuse?

Baby steps but better than none?

Marie x

[Heady in reply to Marie_14]

Marie, everything is baby steps. Don't beat yourself up. It is still such early days. If I can do one positive thing a day, I call that a result. Even if it's only getting out of bed. Why not make next week's challange, to go out a buy and stock a wash bag, so it's one more thing ready to go!

Lots of love

Anne

[Tippyleaf in reply to Heady]

Hope your holiday goes well. I had no idea there weee such groups around. It sounds a good way to help ease you into your new life.

PSP dominates our every minute and adjusting to the post PSP life must be yet another challenge. Though there are days and nights that I wonder if this PSP journey will ever end. Thank you for sharing.

Bon voyage

Xxxx

[Heady in reply to Tippyleaf]

Unfortunately, it will, all too suddenly. One good reason to have the occasional respite, it does help prepare the way.

Lots of love

Anne

[abirke]

I remember TAU 17 (?) being responsible for either PSP Parkinsons back in 2012 when I was researching Parkinsons and found PSP.....

[Marie_14 in reply to abirke]

Andrea have been reading up on it and Alzheimer's and it seems they have known for 30 years what was involved. They just didn't know why. Now they have made this breakthrough it looks like they are aiming to find a cure for Alzheimer's or at least a way of controlling it. That opens the way for Parkinson's and PSP and in fact all neurodegenerative diseases. However they are saying in the paper 10-15 years.

I just read the Tau Consortium information in the US and they are doing clinical trials on PSP patients this year! So they appear to be focused on PSP as the family who are supporting them lost their Dad to the disease and have lots of money to do this. Thank heaven for them.

So I know it won't bring our loved ones back but if it stops others going through the same thing I will be very pleased and even use my wine glasses!

Marie x

[abirke in reply to Marie_14]

Often times issues are not looked at until 1) there are so many with it... OR 2) Someone of wealth has had to deal with it....

As we do not have 1) thank goodness for 2) ......

AVB

[Marie_14 in reply to abirke]

Andrea yes I am glad the family in question have been using their money this way. So many don't unfortunately? I just hope they can stop it happening to others asap!

Marie x

[abirke in reply to Marie_14]

Indeed...If that family suffered like any one of us, there will be a consistent flow of money to eradicate this disease!

AVB

[Yvonneandgeorge]

Anne so happy you are finding new things to do. Xxxx

[Heady in reply to Yvonneandgeorge]

Thanks Yvonne, how are you?

Lots of love

Anne

[Yvonneandgeorge]

Anne we are ok, George is coughing so much, and chocking, very frightening, bloody PSP stinks. Happy that you are going away and that you are going to meet the two ladies the night before, hope you have a wonderful holiday. Yvonne xxxxx

[Bargiepat]

Yesterday my sister was telling me of new work being done at Duke to try and control the tau proteins that are involved with psp and cbd. The new research is moving on from mice to humans .

Another hope for the future ...........

scientificamerican.com/arti...

[Marie_14 in reply to Bargiepat]

Patrick that is a very interesting read. Many thanks for sharing it. Here's to the research!

How are you keeping? Hope you are well.

Marie x

[Bargiepat in reply to Marie_14]

Hi Marie,

I have been out taking photographs and that has kept me busy....... I wish I could find the same energy and enthusiasm for housework !

I am trying to get my apartment tidier so that I can get a cleaner but it is proving hard to achieve this.

My eldest son called me and has suggested we could go on a short break narrow-boat holiday in September, I steer and he does the locks.

My left arm is getting stiffer but I go to the gym everyday which seems to help it and the best news of all is ......... I haven't had a fall yet !

Cheers,

Patrick XXX

[Marie_14 in reply to Bargiepat]

Patrick enjoy yourself while you can. Great news that you are going to the gym and have had no falls! Keep going to the gym as I am sure it helps. Enjoy your photography too as you are so good.

Glad you have a holiday to look forward to too.

Lovely to hear from you again by the way!

Marie x

[Duffers]

Any little bit of information that would help in the future has to be welcome.

Marie

[Marie_14 in reply to Duffers]

Marie yes it is. Hopefully it will be a treatment for the future? Even if it stops it from progressing that would be something?

How are you? How is hubby? Have you had your holiday yet?

Marie x

[Duffers in reply to Marie_14]

Hi marie. Im doing well. A few aches and pains appearing now that ive let go slightly because of CHC. Its going well. Lovely girls/women. Nearly always the same unless one or other of them has a day off. Still 3 times a day. A bit less time than before but enough for us. Im more relaxed to the point i keep nodding off when i sit down now lol.

Ger is same ish. No comfort food or thickened drinks now due to aspiration chest infection. Shame for him. DIstrict nurse still comes once a fortnight to check for sores and the peg site which continually crusts with dried blood. Its fine though. Thumbs get a workout as o my way to communicate now.

This will be the first year since 1966 that ger wont get home to ireland. So very sad for him and me. I loved ireland where ger had built us a holiday bungalow about a mile outside town. I wont get away either. Respite will be in the hospice and very short notice if i get any. But im not worried. There will be plenty of time as you know yourself. I do hope that when you feel ready you'll let us all know. Im sure everyone on here wouldn't be delighted for you.

Sorry about the short book.

Take care of yourself. As they say, one day at a time sweet Jesus.

Marie

[Marie_14 in reply to Duffers]

Marie sorry to hear Ger is now too unwell to go home to Ireland. It's a shame for both of you as it was a change of scenery for you too?

Why don't you rent your house out for the holidays? At least it would be extra income for you?

Not sure what you mean about telling you when it's time for me! Time for me to do what?😀. Very intrigued.

Marie x

[Duffers]

Don't be intrigued Marie. I just meant that you, and only you, will know when you are ready to go away on your own and when you feel comfortable doing that then we on this site will be absolutely delighted for you and look forward to hearing all about it. Roll on the day.

Marie x

[Marie_14]

Well I actually went to the Post Office yesterday to renew my passport! The woman serving me wanted to know where I was going! So I had to tell her I didn't know if I was going anywhere but just thought I would renew my passport!

I also started to use the many gift cards I had for Debenhams and Marks and Spencer. Have some left for Debenhams so will buy some winter clothes when they come in!

Haven't started on John Lewis or Boots yet! 😁

I also went for coffee with a group called Widowed Friends! There were 11 of us I think! They had no idea I was going to turn up...neither did I. Only spoke to two women but they were very nice. I think they were just a bit younger than me but the men (4) of them were all older as were the other women. I was quite surprised there were any as men don't usually join things like that? They have all probably be going for a while as they seemed to know each other well. So baby steps but better than nothing?

Love to you and Ger lovely Marie.

Other Marie x