PSP Association
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Feeling out of my depth

Hi, I'm New to this and not very good at talking about how I feel!

Terry was diagnosed with PSP in March this year, having been ill for the last 4 years. I care for him at home,but feel really scared sometimes that I am not coping very well. We have 2 sons who are very supportive but live a 21/2 to 3 hours away. We had some friends visit yesterday, and although we did not do anything, he was exhausted when they left and went straight to bed. Is this normal?

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Welcome wife of Terry! It’s completely normal for you to feel out of your depth! Are you in the uk? If so, do you get any help at all? And yes Terry will feel very tired after visitors or any other event because Psp is very tiring for the patient as well as the Carer! Look forward to hearing more about you x

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Thank you.. We live in UK and are very lucky to have support from our local hospice care at home nurses. I didn't realise how much this disease would tire Terry out!

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Yes, very normal. I am surprised you didn't as well! In this new life you now live, anything out of routine is extremely exhausting. BUT don't stop! You both need the stimulation that seeing others provide. Help comes in various ways. Friends/family popping in for a meal, coffee, share a bottle of something, is one of the best things others can do for you both. Gives a sense of normality, your husband may tire, not seem to be aware, but believe me, he will be taking it all in and enjoying the moment.

As for you not coping. Is it time to start asking for extra help? One thing carers have in common, is the reluctance to accept any extra assistance. We all think we are Superman/woman. Carrying on, getting more tired and frustrated with the situation, until we crash. That will be the worst thing you can do for your husband. Asking for help, getting plenty of rest, time to yourself, is going to be the main part of the care plan in your husbands care. This is NOT failing, quite the opposite. Crashing is failing, I know, I went there on numerous occasions. Still have the scars to prove it. Certainly didn't do my husband any good either.

You have done the best thing today, contacting us on this site. It's going to save your life and help Terry live in a much happier state. We all support each other, through the good times and the bad. Share advice, mainly, just listening, being that shoulder, you so desperately need. Nobody will judge you, we tell it how it is, warts an all. This will no doubt frighten you at first, all too soon, you will come to realise, you are not alone, in your feelings of frustration, anger and downright hatred for this evil disease.

The only way through, is concentrating on today, do the things your husband can do, get out, visit friends, go out for a meal, if you still can. Even go on holiday. It's one day at a time and being as postive as you can.

Let us know what part of the world you are in, so the good folk from your area, can give you some practical advice.

Sending big hug and much love

Lots of love

Anne

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Hi Anne, Thank you so much for your reply. I have tried to keep things as normal as possible, but unfortunately Terry seems to have given up, he was such an active person doing everything from diy to gardening ro cooking and he loved walking, this illness has robbed him of all of this and he has found it very hard to accept. I am sure talking to others in the same situation will help me a lot. We live in Devon in the UK and are lucky enough to have support from our hospice care at home nurses. My sons have tried to encourage me to join one of these forums for some time, I'm glad i did now. Thanks again.

Love

Hilary

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Have you joined the PSPA? They will send loads of leaflets to you. Some especially for the professionals, because anybody that knows anything about PSP is very few and far between. Also they run support groups. This may not sound your cup of tea. Wasn't mine either, but you get to meet others on the same journey. It frightened me at first seeing others more advanced than Steve. Unfortunately, it wasn't long before he looked the same. But at least I was prepared. Oh to be in a room, that everyone had heard of this blasted disease, was priceless. It made Steve feel less like a freak.

My husband had the apathy as well. Use to really upset me, that he wouldn't fight. Became to realise, whilst apathy was my enemy, it was Steve's best friend. Doesn't mean you give up trying to get him to do things. Is Terry doing any exercises? There are specialised exercise classes for people with Parkingsons. They really helped Steve, when he couldn't go to them anymore, I got a personal trainer,to come to the house twice a week, right up until the week before he died. It helped keep his strength, plus he loved the young lady and really enjoyed his time with her.

Lots of love

Anne

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Yes I have joined the PSPA and had phone calls and info.from them which was very useful..I will try and find out where the nearest support group meets. I do tend to let Terry make decisions about what he wants to do, which is quite often nothing! The occupational therapist came for some time to do exercises with Terry but did not have much success, So decided not to continue with that.We now have a wheelchair so I am trying to take him out more.

Love

Hilary

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Using the wheelchair was a tough transition for my husband. It gave us much freedon, however, to get out without worrying about falling. He came to a point where even the wonderful U- Step wasn't much help:)

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Hi

Yes is the answer! Use the site, wealth of info, my routine when i wake at 6ish, not always predictable! Is to have my cuppa and check thr site. We are all on the same journey.

Julie

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Larry never had any trouble falling of to sleep before PSP now it's ridiculous. He sleeps about 12 or more hours a day now. At night 6 to 7 hours then after each meal an hour or more. One on hand I'm happy about it as I know he isn't going to try to get around by himself and I have a bit of time to myself to do all the other things that need doing around here. I get to sit still for a break.

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Hi, Terry does sleep a lot during day but this means his nights are not so good especially if he goes to bed at 6.ppm. You are right about him being safe whilst he is sleeping, I hadn't thought about it that way before!

Thanks

Hilary

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Best thing you could have done is join this site, its invaluable in so many ways. We also have two sons living 200 miles away and no direct family living nearby and that can make things more difficult especially for practical support. I tried to encourage Ben to attend the local PSPA support group hut he was adamant that he wouldn't participate which I feel was a shame. He does go to the hospice day centre which he does enjoy even though he can no longer verbally communicate, they know him so well and make a fuss of him. Ben is not in the least bit interested in going out but does enjoy when friends pop round for a drink but is always exhausted when they leave. He was awarded CHC funding six months ago and I now get an extra 3 hr sits do that I can go and do things for myself and I hope that you will fe able to get some relief from the responsibility of caring 24/7.

Love kate xxx

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Terry is also very anti any support groups or day care centres, but doesn't mind me having helpers in to sit with him whilst I have some "me time"which I am very grateful for.I sympathise with you not having your boys close by, we always look forward to their visits.

Love Hilary xx

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Hi Wifeofterry,

First I agree with Heady point of view.

I enclose my experience in case it can inspire some positive actions to you:

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.

2017-11-16

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.

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

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.

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.

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Thank you, the notes are very useful for me to refer to when necessary.

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I too am new to this. I was diagnosed with PSP about 5 wks ago and can relate to everything I have read so far. The best I can say at this time is keep going and stay positive, that will get you through.

Love & hugs

Rachel x

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It's a long journey and 5 years for me now. You are coping believe me.

Charles has visitors but is very sleepy afterwards. It's their inability to keep up with conversations that make them tired. Sad because they are so smart.

Take care,

Cuttercat

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