As much infomation as possible.

[Demziebee]

Hello all,

I hope/ wish high spirits to all today ☺️ I am a carer professionally.

Here to find out and hear anyone’s stories regarding PSP as I am extreamly new To it. Would like to gain as much infomation as possible.

Kind regards

Demi xx

[Dadshelper]

Hi. Just start reading/searching thru old posts. There's a wealth of info about PSP/CBD here.

Ron

[homesupport223 in reply to Dadshelper]

Yes I agree with dadshelper. Refer back to old posts. You will find a wealth of information. But more and over above that it is written by real people calling for help. Real people responding. What might work for one,might not be appropriate or applicable for another. We all care for our loved one that are at different stages of this terrible condition. We don't know all the answers. When we are the end of our tether we can come and seek support and advice. Share our experience. It can get very lonely during the time of caring but also after our loved one has passed on and this site is there to encourage and support.

Just to mention a word of thanks to my faithful friends thank you for support and encouragement and care.

Henry

[Demziebee in reply to homesupport223]

Henry I have replied back to you amigo ☺️ Xx

[Demziebee in reply to Dadshelper]

Thank you Ron, I have been reading through some old post and following lots of people also.

Such a fantastic community of people.

Thanks for the help xx

[Demziebee]

Also would just love to try and gain prespective of what it Is like for someone’s living with PSP.. I want to understand as much as possible to try and help my lovely lady to the best I can and what she deserves ☺️ Xx

[ceeabee]

Hi Demi,

It's so good that you want to learn more about PSP. Carers play such an important role! I haven't been brave enough to write on here before but your wonderful attitude has prompted me.

My Dad has numerous falls but still will not stop trying to do the things he has always done. If he just sat in his chair all day he would be miserable. I am just beginning to realise that we need to accept this, and the carers who come in and patch up his cuts and bruises and carry on are the most understanding. It is messy and he could have a fall that he will never recover from but that is what it is at the moment. Everything could also change next week or next month or tomorrow!

Thank you once again for your caring and concern.

C

[LuisRodicioRodicio]

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).

In my opinion, as long as possible, the best place for a patient PSP is their home. This entails the need for assistants to help the main caregiver and to be able to cope with the considerable expenses that this generates. It also demands a reasonable good health of the caregiver since the management of all the tasks that it carries with it produces a remarkable wear.

In principle, the limit I have set to send the patient to a nursing home is dementia or the need to apply specialized medical care.

The non-strictly medical parameters that the main caregiver must manage:

1) Avoid falls: transfer techniques, seat belt, wheelchairs with anti-bedsores cushion, to adapt the bathroom, handrails on each side of the bed, articulated bed, plastic wheelchair (type ETAC) special for hygiene and shower, etc.

She has regularly used a wheelchair since June 2016 (Four years after first symptom) . The wheelchair is made in aluminum and is foldable, easily transportable in the trunk of a car .

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. Ice cream are well tolerated .

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 (Odd days), walk 200-300 m (even days), speech therapy exercises and exercises ocular muscles. After that he needs to rest at least 30 '

.

Without any scientific basis, only observation of four nearby neurological diseases cases, I have the impression that a specific program of intense gymnastics can slow down the disease in an important way and is more effective the earlier the disease is detected.

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. It is advisable to have holidays in places where the moderate climate allows you to go out on the street and do walks-gymnastics as well as socialize. The transport by car is adapted to take the patient and the wheelchair. Similar Citroen Picasso tall seats are recommended. .

6) Control of palliative medication against depression and insomnia. In our case right now: 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 upon request. If you have problems applying the drops "Optrex spray" is an alternative.

7) Communication: There are magnetic letters of scrable (20 x 20mm, if they are bigger, better). We put the letters of the alphabet in a metal tray (may be worth one of the oven) well illuminated and placed at eyes level. She is pointing the letters and another person is writing on a blackboard the letters that she points out. Until now it is the best system.

To say yes or not she uses head movements.

We have a part-time hired person to perform gymnastics, personal hygiene and dressing. Another person lives with us with holiday on weekends free. Those 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 the health of the main caregiver is and his/her medical history.

The bottom line is that jobs and occupations of the main 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.

[Hidden]

I read this site daily and usually find out something everyday. The various possible senerios that can happen. I want to be over informed rather than under informed.

If I’m looking for something specific I use the magnifying glass search icon up in the right hand corner to search the site for past posts.

[doglington]

One thing to bear in mind is how varied the progress is. My husband never had pain apart from choking.

[Demziebee in reply to doglington]

I like this. Yeah my lady has had her sight affected x