New user from Ballarat, Australia

[nayook]

looking forward to reading posts. My husband has PSP and I don't know anyone else who has it, so I'm hoping to become better informed

[41273416a]

Welcome! Sorry you need to learn all about PSP, but this is the right place to learn and get support, too.

[nayook in reply to 41273416a]

Thanks for the welcome. I've read a lot of posts on the site today. It's in some ways depressing, as it's apparent that the journey will be tough both for my dear hubby and for me. Probably more so than I had expected, but I think it's important to know what is ahead. It helps to be prepared. I'm finding it tough to know how to respond to well meaning people who offer advice about natural and exercise therapies without understanding the nature of PSP. It is refreshing to know that there are others out there who do understand the condition.

[Heady in reply to nayook]

Oh yes, we all understand about PSP on here!!! Welcome to the only place that will be able to help you and husband with his journey. We are all carers, ex in my case, or sufferers of PSP. We all share the good, the bad and the ugly. Of course, a lot will frighten you at the moment. It did me, when I first joined, but I soon came to realise, this is what we had to face, therefore I did need know, warts n all. Everyone uses this site to rant and rave, kick and scream, nobody judges, all to busy feeling exactly the same. Equally, because it is a worldwide site, someone is always on here, to help with any little query you may have, great for those sleepness nights. If you have a worry, ASK! Somebody will know the answer, or be able to point you in the right direction, for help. There are people on here from Australia, so hopefully, you will be able to tap into their knowledge of how things work, in your part of the world.

Most importantly, you must concentrate on what your husband CAN do, not what he can't! Travel, if you still can, get out and about. Don't sit waiting for PSP to win. Fight! It is an evil disease, being as positive as you can, IS the only way forward.

Sending big hug and much love

Lots of love

Anne

[teej]

Hello Nayook,

Sorry to hear about your husband. I'm Teej in Adelaide. My Mum has PSP and I've been on this forum for 3 years. She has had a pretty much textbook PSP experience, but this is not the case for everyone. No doubt you will be doing lots of research about PSP and learning about what is to come. There is plenty of info out there. Whatever you learn or wherever you go - remain in this site, it is an incredible community of people across the world who will offer you love, support, friendship, comfort, advice hope, whatever you need. The knowledge and information here is unmatched anywhere in my experience. My advice to you is to get out there with your husband NOW and do whatever you have wanted to do together. Have fun, laugh, spend your money, live the life you have! Everybody's experience of PSP is slightly different (or vastly different). Mum saw a Neurologist at Flinders and I have to be honest they don't know a great deal about PSP. I learned nothing from her specialist that I didn't learn from google. If you have any questions at all, put them up here in this forum, there are no taboos, no dumb questions, just people like you and me trying to accept what has happened and to help each other in any way we can xxx

[BindiLeech]

hi there Nayook, I am so sorry but this is going to be a lot shorter than I initially intended as UI started typing about 30mins ago then I stopped for about 10minand then when I came back, the inevitable had happened.......but can I just say, to reiterate what has already been said, that this site would have to be the best site ever!!!!! and I Do not say that lightly..........for all the reasons that have been given..........and as a PSP sufferer myself, I feel incredibly privileged to have all these people from all over the world, on my side!!!!!!!!

More importantly though for you, Nayook, I would like to tell you that I Am a fellow Australian from the land initially of New Zealand), and we are living in Queensland - in fact we are living in Brisbane - so if you are ever up this way.........then please contact me.

So I shall head off now - as I have already said WELCOME TO THIS SIte

Cheers and love, Bindi x x x x

[LuisRodicioRodicio]

I enclose my experience in case it can inspire some positive actions to other caregivers. In few words these are my experiences on PSP disease hoping they will be useful :

If the doctors agree that it is a parkinsonian neurological disease (like PSP, CBD, etc.), I suggest to start an intensive gymnastics program as well as walking, up and down stairs, speech therapy, etc. as son as posible, to slow down muscle dysfunction.

Bearing in mind that the PSP patient become significantly more fatigued than a person not sick for the same activities, which requires more frequent rest periods.

2017-11-17

PSP is a disease without pharmacological treatment yet. The only thing you can do is counteract the symptoms…....but, you can achieve a reasonable quality of life, even interesting despite how hard this disease is for everyone.

My wife suffers from PSP. The first specific 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 physical and psychic.

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) Falls (From 2008 to 2016 my wife has fallen 11 times some of them serious. From 2008 until the first specific symptoms of PSP in 2012 she showed some instability and suffered two falls that nobody related to PSP).

Avoid falls: transfer techniques, seat belt, wheelchairs with anti-bedsores cushion (our anti-bedsores cushion is: JAY from Sunrise Medical Ltd brand.), 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 (aluminum wheelchair is: Ergo Lite 2 from KARMA brand).

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

3) Prevent solids or regular liquids from reaching the lungs to avoid eventual “aspiration pneumonia”. Add thickeners to drinks (water, Aquarius orange or lemon); to drink use a plastic straw and try he/she drink with the chin as near as possible to the chest. Relatively doughy food and solids in small pieces. Mediterranean diet insisting on fruits (peeled fruit) and vegetables. Fruit compotes in small pieces or passed by mini-pymer. 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): At least 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.

The difficulty to follow the rhythm of a normal conversation, being treated as a child or being the object of attention for his illness and not for the person who is locked inside that jail that is the PSP, produces feelings of frustration and humiliation. You have to try to avoid those situations but keep attending social events because although usually resisting to get out of the routine at the end the person wiyh PSP have normally very good times.

In the event that the food is difficult to handle (spaghetti, salad, etc.) or it is a meal in a restaurant with people who are NOT from the family (former colleagues of university, etc.) and where the restaurant marks the rhythm when serving the meals, it is very likely that the person with PSP needs help to eat and thus not delay the rest too much. This can create feelings of humiliation. In the future we will try to select the type of food and attend meals in which the rhythm of the meals is very flexible.

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.

She recently showed interest in a light TV show that he sees after dinner. Surprisingly this has significantly improved the relaxation and rest at night.

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 (falls). 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/ are a 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.

[nayook]

Thank you everyone who has replied. I am beginning to understand what a wonderful site this is. All your suggestions and loving support will be taken on board. Thank you Luis for your comprehensive information. I will keep it at hand for ready reference. I've intuitively felt that exercise has to be the major tool we have to battle the deterioration, but Rob is very hard to motivate.

Your info will be helpful in motivating him I'm sure.

Thanks Bindi for your kind invitation. I must get some sleep but will eventually get round to telling you all a bit more about Rob's history, diagnosis etc.

Love and thanks to you all.

By the way I feel comfortable using my actual name rather than "Nayook". I'm Lynne.

[Birdman34265]

Hi Nayook ,welcome to the psp forums,speak with your heart to the forums,we live in Napier NZ.in Napier there is only about 4 psp patients, since joining psp uk it has been a great help.my wife is only 63 years old,had psp for 3 years,for me I am 70 years old also heart and diabetic patient,life can be a roll coaster of emotion,but with a positive outlook and help with family and friends you will come.psp will effect eye movement.balance.speech . swallowing, slowness of thought, emotional outburst.my wife uses a walker and with me supporting her we get around, outside we use a wheelchair All the Best to you and your husband .Peter and Kathy