Hi, I'm Bill

[Clarkbill12]

Only just heard about the PSP association. I told my wife about it. She was diagnosed around two and a half years ago, she was delighted that there is an association we can get in touch with for support etc. She is pleased to hear as I am that we can meet people in the same situation. Margaret can't walk, has to be hoisted in and out of bed or wheelchair. She has difficulty speaking, bad eyesight and partially deaf. I am her full time carer. She has two carers come in four times a day to get her up change her pads and tuck her in at night. It is a relief to know there is support out there.

[Zeberdee]

Sorry you have to join this site but welcome. You will always find friendly and helpful advice from people with a listening ear for when you feel really down. Jx

[easterncedar]

Welcome, Bill and Margaret. This is a wonderful community, full of caring and support and advice and conversation. When you have time, why don't you tell us more about yourselves? Sometimes all we know of one another is the disease, but when I have asked for more I have so enjoyed hearing about the wonderful people I have gotten to know here and learning something of their histories.

Best wishes, Easterncedar (Sarah)

[Althea-c]

Welcome to a life saving site. I have had much support,and gleaned much information from all who are carrying the weight of PSP.

Margaret and my husband Barry seem to be at a similar stage.

Althea 💛🙏

[Clarkbill12 in reply to Althea-c]

Thanks Athena, keep your chin up.

[LuisRodicioRodicio]

Hi, Bill.

As you know Bill, PSP is a disease without pharmacological treatment. The only thing you can do is counteract the symptoms.

In few words these are my experiences on PSP disease hoping they will be useful :

My wife suffers from PSP. The first symptoms (difficulty speaking as if she had a stone in his mouth and a slight tremor in the ring finger) will be presented in March 2012. The definitive diagnosis was in June 2015 (Difficulty in eye movements).

Palliative treatment of the disease is currently as follows:

1) Avoid falls: transfer techniques, seat belt, wheelchairs, to adapt the bathroom, etc.

He has regularly used a wheelchair since June 2016.

2) Prevent cold and flu (vaccine could be advisable) to avoid pneumonia.

3) Prevent solids or liquids from reaching the lungs. Add thickeners to drinks. Relatively doughy food and solids in small pieces

4) Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): Go up and down 50 steps, walk 200-300 m, speech therapy exercises, exercises ocular muscles. After that he needs to rest at least 30 '

5) Socialization. Almost every evening, social activity: cinema, city walk, show, museum, conference, visit grandchildren, snack with friends, etc. After that he needs to take a rest.

5) Palliative medication against depression and insomnia: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 to food; 1 Lorazepan-1mg one hour before dinner.

Drops of tear to the eyes.

We have a part-time hired person to perform gymnastics, personal hygiene and dressing. Another person lives with us with holiday on weekends free. Always two persons help me a lot regularly and the children help whenever they can. Also the friends of always collaborate.

Each patient seems to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.

Various medications have been tried for pain episodes. There have been some side effects such as confusion and daze, especially with opiaceous. Currently when an episode of pain arises we use progressively: Paracetamol, Nolotil in capsules and if the pain is acute Nolotil in glass ampoules. All under medical supervision.

Our plan has been designed and adapted simultaneously by the neurologist and the family doctor. In the small occasional doubts or small urgencies we are guided by a relative who is a doctor.

We found great help information In the comments of the members of this great association -HealthUnlocked- and also the web "CurePSP": psp.org/ has been of big help.

Releasing the caregiver and allowing him / her to have life outside the home as well as to avoid strong or continuous physical and psychic efforts is fundamental. The main caregiver of a patient of PSP is progressively taking charge of the work that did when the disease had not been shown, plus the work done by the patient of PSP, plus the management of the illness and the people who are forming the team of help. One must also look at how old is the caregiver is and his/her medical history.

The bottom line is that jobs and occupations of the primary caregiver grow at the same time as age is going up ..... without an important help is very difficult to carry out without a brutal wear.

From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregiver, far away from the PSP. At least, a week of holidays each six month is advisable.

I hope and I wish these notes are useful.

[Richard33 in reply to LuisRodicioRodicio]

I meant to say before - very wise words. I find the socialising with other people difficult to persuade my wife to do, although it is important. She is very conscious of how much she has changed and how hard it is to communicate now.

Richard

[Clarkbill12 in reply to LuisRodicioRodicio]

Thanks for that information, I appreciate it.

[Joanna8 in reply to LuisRodicioRodicio]

Thank you - this is an incredibly helpful post.

[Katiebow]

Welcome to the site Clarkbill albeit under such sad circumstances, you will find this site invaluable for support, information and a place to get things off your chest. It sounds as if you have all the care stuff sorted, do you have CHC funding for your wife, my husband, Ben, was recently it and it's a great help.

Keep posting, i feel it's the only place that resllblistens and understands what we are going through.

Love Kate xxx

[Clarkbill12]

Thanks Katie, I will look into CHC.

Best wishes

Bill

[Duffers]

Hi bill and margaret. welcome to this wonderful site. Sorry you had to find us. Sounds like your house is like all of ours, ceiling hoists, standing hoists, wheelchairs, commodes, recliners, pumps etc etc. The list of aids is endless but thank God for them as it enables us to look after our loved ones in their own homes.Keep posting. Always someone to talk to here.

All the best. Marie

[Clarkbill12 in reply to Duffers]

Hi Marie

As you say without all the gear she wouldn't be with me. They are a blessing.

[Hidden]

Welcome to a group no one wants to belong to.A wealth of information here.

Take care of yourself first then your able to carry on this long road.

Dee in BC

[Kevin_1]

Hi clarkbill12

The trick, I learned it slowly, is to protect yourself as a carer.

The demands on you will become immense, but with fore sight, and good support it is totally doable.

Ask you GP to refer you for a CHC assessment. Just that.

CHC is NHS and all care is free of charge.

There is a tendency to redirect people to Social Care from the Social Services. It is means tested and it is expensive. If you live with your loved one the home is exempt from the means testing.

If you go down the CHC route ask here. You need to learn the basics of how they asses and you need to be there for the assessment.

Forget 'nice NHS'. This is something you need to fight for. I am sorry to have to say that. One recent report said that 75% of appropriate applicants were being refused CHC.

There are great straight forward guides about how to manage the assessment and how to get the best out of it. Many here have been through the process and we will all step in with info.

It's a bit of an emotional roller coaster... but is not so difficult.

Get the care it, make use of OTs, Physio and all of the other resources out there... It makes a huge difference.

Just keep posting here with questions on anything, the experience and information on this forum has got me through the worst of issues.

I'm so sorry you have this on your plate.

Belated welcome

Best to you both

Kevin

[Clarkbill12 in reply to Kevin_1]

Thanks for that, I will certainly ask questions.

Bill

[Cuttercat]

You will gleen alot of information here but most importantly friendship and understanding.

Cuttercat

[doglington]

Welcome, Bill.

My husband, Chris, has PSP and we have been married 55 years. He sounds similar to Margaret.

There is lots of knowledge on this site - but perhaps the most important is the support you get when things are black. Its beyond words to know that the people here really know how it is.

love from Jean x

[Clarkbill12]

Hi Jean

Nice of you to welcome us. Margaret and I will have been married 55 years next month. I'm glad I found this site

Best wishes

Bill

[F4rn12ley]

Hi Bill and Margaret I have found this forum really helpful and although I tend to be more of a reader than a poster, it really helps to know there are other people out there who understand the ups and downs of PSP. It is my Mum who has PSP. Xxx

[Clarkbill12 in reply to F4rn12ley]

Thanks for the encouragement.

[F4rn12ley]

Bill we found the local Hospice an amazingly supportive place for both patient and carer. They will be able to give you such good advice and support. Our family would not have coped so well. And they were the reason my Mum was awarded CHC. X

[Clarkbill12 in reply to F4rn12ley]

We hope to go to a PSPA meeting in the Edinburgh hospice next month

Bill

[Birdman34265]

Hi Bill glad you have joined us ,it great to get support from fellow carers, my wife has psp also ,problems with speech, eyes ,balance, swallowing, lately i have been under a bit of stress with a cold and shingles on my leg ,but you have to remain focused on your job as carer and with love and dedication you will succeed, all the best Peter