PSP Association

Tired and sleeping much more

Charles is so very, very tired and sleeping so much more. He has one eye that closes involuntarily and his mouth droops. He still eats but it's not as much as he'd like.

The time with him is so limited since I'm the carer and don't have much help. I still have to buy the groceries, etc. and get the house in shape. I just wish he could communicate in a way that was easier.

Plus we're dealing with constipation issues and he's pretty uncomfortable. Meds for it are hard to take with PSP patients since they can't drink much. Alas.

Sad each and every day. Can't help it.

Cuttercat

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Sad with you🌻

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sounds so familiar, CC. I am sorry you and Charles must go through all of this.....

As my husband you to say....his last understandable words....

Do Well

AVB

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I'm so sorry your having a tough time, I can relate somewhat.

My guy is on lactulose,today he had 50.+ mils and it did the trick today after 3 days of not having a bowel movement.

You take care of yourself.

Dee

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Sounds so familiar and it is heartbreaking. Thinking of you and all the other sufferers and carers. Jxx

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Heartbreaking Cuttercat 😓

Sending much love at this time, wish I could offer something more x

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Hi,

I noticed my dad was very sleepy yesterday when I went to visit him in his home. After every mouthful he shut his eyes and chewed his food with his eyes closed. Then I had to say “are you ready dad” then he’d open one eye look at me and then open his mouth.

My dad has constipation too.

All very sad.

X

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Sounds familiar. It's so strange isn't it.

Cuttercat

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Hi

Found something by chance which seems to be working for rog ,his food is now pureed so he has porridge and soaked prunes blitzed, 15 mls lactulose in a cup of tea and two sachets of laxibk after three days if he has not gone , seems to be working a treat, wether the blitzing of the prunes helps them to work better i don't know.

Keep warm

Julie

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Hi Cuttercat, the constipation problem are a nightmare. I spent the last 18 months, fighting this. I can't believe Steve was the first person, that couldn't swallow the medication, they insisted giving him. Enemas were the only thing that gave him any relief and most of the time, they refused to do this. Still very bitter about the way he was treated. Hopefully, your doctor will be a bit more understanding. I think the main problem with Steve was, he didn't know how to open his bowels. Nobody understood this. The whole action and feeling, frightened him. According to the specialist, he saw right at the end, that is perfectly normal in neurological problems. Unfortunately her intervention came to late to give Steve any help.

If Charles is sleepy, then let him sleep. At least he is getting a bit of a holiday, from this evil disease. Try and rest yourself, at these times.

Sending big hug and much love

Lots of love

Anne

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My husband has had constipation issues for the past year. When mentioned at his 3 month neuro appt in August, the dr recommended magnesium. It took a while I’d say a month or so, but it does work. He takes one 500mg tablet per day with orange juice. Also, he eats a handful of dried pitted prunes each morning and drinks plenty of water. All of these keep him regular.

He has become extremely fidgety lately to the point where I can’t relax around him. I bought him fidget balls and a fidget spinner but they don’t seem to hold his attention for long. He has become fixated on door knobs, zipper pull tabs, and light switches. I am wondering if there is a mild sedative that would settle him? We see his neurologist next week so I will ask.

He has been accepted into an adult day program once a week for five hours which gives me a huge chunk of time. I can book hair appts, see girlfriends for lunch, and have some me time. Like you, I am the caregiver and still need to shop, clean, do laundry, prepare meals, and shower, shave and dress him and get him to his many exercise classes and appts. I had hired a walking companion for him, but he has fallen twice while out so she won’t go with him anymore. She does come for an hour once a week to help him with sending out emails as he can’t manage to use a keyboard and the talking option doesn’t work because of his soft, slurred speech.

There is a new challenge weekly but all we can do is roll with it. Thankfully we have this forum for support and companionship.

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So sorry, cuttercat.

Big hug from Jean xxx

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I can relate to this post so much, the last six months with David, I spent almost zero time with him. If I wasn't at work, I was in the kitchen doing meals, or cleaning, or feeding and bath rooming him.

By the time I had everything done, and came and sat down, he just wanted to go to bed. I think I got about ten to fifteen minutes a day with him when I was just sat by him, and could relax or just talk to him. That was the bit that broke me down so much,

I was also sad each day, but I guess I am even sadder each day now.

My advice ? Stuff the cleaning as much as possible and other tasks, and enjoy the time. That's my biggest regret. Sit, and just hold hands, no words are necessary. I should have done more of that. Just be together.

Hugs

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I am leaving Jack to his TV much of the time, too😑 I keep saying , I 'll hang out with him tomorrow, then tomorrow I get right back to cleaning house etc.😕 I am aware I may regret it , but, I'm getting so much done......I want to have things in order for perhaps harder days ahead. This is the thinking habit I am using to justify taking advantage of him being calm and quiet and safe in his chair.

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Thats the problem. We don't know whats next. Now I look back I could have sat with him more but at the time I was always alert for next crisis !

We can only do our best. You need to keep yourself feeling on top of things because PSP is holding all the cards.

love from Jean x

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Hi !

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.

2017-12-01

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, the need to apply specialized medical care or the patient´s needs became more then you could do at home .

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.

We have had some episodes of constipation that have been corrected by applying an intensive mediterranean diet in fruits and vegetables helped by the drug "Duphalac".

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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I'm confused,are you a caregiver for a loved one with PSP or CBD or as you posted ect?..

Sorry I have read your previous post.

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I am the main caregiver of my wife with PSP.

I have summarized my particular experience with PSP to give some suggestions to those who find some of the problems that I found in the development of the disease .

The text is very general but I think it can contribute something positive.

Also my English is not very good but it is the best I can do.

Greetings.

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I can relate to that with my husband. Frustrating indeed. He is able to take the meds with unsweetened apple sauce, we keep a lot of bottled apple sauce at home. He cannot have any cold or hot drink without the thickeners. With the constipation issue, our primary Dr suggested Meralax powder everyday with the thickened water, and fiber pills at different times. Plenty of water of course, that is a challenge. We have been managing sort of, never know what throws him off any day. Hang in there. You are doing the best you can.

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My thoughts and Prayers are certainly with you during this most difficult ordeal!!

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Cuttercut I am so sorry that Charles is going downhill. Is there nobody who could help you? It is so stressful being a lone carer. Poor you and poor Charles.

Hugs to you.

Marie x

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