Advice

[AvonJane]

my mam has just been diagnosed with PSP, she has had symptoms for about 4 years, she already walks with a walker, very badly, and chocking is a problem when she eats or drinks, what can we expect, how can I get support, I have moved in with her,

[Zerachiel]

Hi, the first thing I would do is asked her GP or Consultant for a referral to Speech and Language Therapy, they would assess her swallow and recommend how to prepare her food to avoid choking, they may also refer her to a dietician. It is important that the choking is addressed quickly as she could be inhaling food or liquid which can lead to Bronchial Pneumonia.

[AvonJane in reply to Zerachiel]

thank you, I will get on it first thing in the morning

[Kasenda in reply to AvonJane]

Sorry to hear of your situation. I would also suggest a referral to an Occupational Therapist who will help you with equipments and home adaptations. It’s never too early to think of these things as progression varies with PSP. You may be able to receive a grant from the council so it maybe worth registering your needs with them as there maybe a waiting list. Also contact the PSP association who will provide you with useful information of what help is available for your mum. All the best.

[Dickwin]

Jane, I am in the US, so our situations are both similar and different. Since I never purchased long-term care insurance for my wife, I won't get any long-term care assistance from my private health insurance. And because I am not financially destitute, I will get no assistance for care from my government until my wife, who is 57 years turns 65. My wife has had PSP for over 10 years. She has progressed slowly, and it took us 5 years to get a correct diagnosis. My wife is very set against going to a care home and said so as soon as she was properly diagnosed, so going into a home was eliminated as an option. So I renovated a room in the first floor of our home with a disability enabled walk-in shower, toilet, sink, etc. We also got a hospital bed, a Hoyer lift and an electric chair. The chair is a God-send, as it allows her to get around pretty easily. She really cannot walk any more, but she can stand and pivot from bed to chair, chair to toilet, etc. She is rapidly losing her eye sight, her speech, and her mobility. She is also incontinent and needs help with toilet issues, eating and drinking. Her care is now a 24/7 endeavor. On the positive side, she has no dementia, no loss of executive function, and no swallow issues. So she can still communicate with us and aspiration pneumonia has not been an issue at all. So it looks like we may be blessed with her presence for quite a while.

In the U.S., we do not get much at all in the way of assistance from the government. With the exception of the electric chair that insurance paid for, the home renovations, the handicapped bathroom and shower, the hospital bed, Hoyer lift, walkers, etc., are all out of pocket. I do not have long-term healthcare insurance for her, so I looked into getting full time care for her and that was going to cost more than I could afford. So I retired early and I am taking care of her, with some help from our kids. This is the hardest job I have ever had, but it is also the most rewarding. And this site is one of the things that has made caring for my wife on my own achievable. virtually any issue I run into I can find info about on here, and the people here are so friendly and compassionate. This is my lifeline.

BTW, the progression of PSP is different for everyone. The onset of symptoms are different, the duration is different, etc. Some people live up to 20 years from first symptoms, some only live a few years. Some are wheel chair bound for many years, some remain ambulatory for the duration of the disease. Some develop swallowing issues very early in the disease, while others don't have swallowing issues for 10 or 15 years. It is different for everyone, so you have to be ready for anything and take it all one day at a time. It's a marathon, not a sprint. Good luck!

[AvonJane in reply to Dickwin]

thank you xx

[Dickwin in reply to AvonJane]

Jane, as I mentioned above, every case of PSP follows a different progression - Some faster, some slower. And every patient will get presented with a different set of symptoms as well. One thing that seems to be true of almost all PSP patients is that at some point, usually during advanced stage, they will develop swallowing issues. The swallowing issues almost always lead to aspiration, and aspiration leads to aspiration pneumonia. Once this happens, one of two things will take place:

1) The patient will have a feeding tube inserted which will stop most of their aspiration issues and greatly reduce the chances of another bout with aspiration pneumonia. Patients that get the tube seem to live another 1 to 2 years.

2) The patient will opt out of getting the feeding tube and will let the disease run its course. Depending on how severe there swallow issues are these patients seem to pass in 3 months to a year.

*Please note that this is what I have observed in my ten years as my wife's primary, and my 6 years of participation on this and another PSP online group. I am in no way an expert, just a more than casual observer.

Nurses who have worked extensively with patients who have PSP, CBD and MSA have broken out the progress of the disease into 4 stages: Early Stage, Mid Stage, Advanced Stage and End of Life Stage. Your Mam is probably in the Mid Stage or early Advanced Stage and my Wife seems to be in Advanced Stage, which generally runs about 2 to 5 years. Symptoms during this Advance phase stage are as follows:

Mobility significantly compromised

Probably chair bound

Significant visual problems.

Significant muscle stiffness.

Significant communication problems

High risk of aspiration and pneumonia as a result of dysphagia.

Pain.

Increasing periods of sleepiness.

Incontinence.

Severely withdrawn socially.

Dependent for most or all aspects of care.

End of life stage:

This stage is difficult to detect and can commence at any time once a patient is in the Advanced Stage. It is characterized by the following:

Reduced levels of consciousness

Inability to eat or drink

Acute infection

Falls leading to ER visits

Major fractures

Rapid and significant weight loss.

The end of life stage typically spans 6-8 weeks.

Hope this helps as a general guide.

Good luck, Dick

[Purrlie]

So very sorry that you and your family are dealing with this horrid disease. But, the PSP Association and this site is the best resource you could have found for help, advice, and support. Sending you big hugs, Purrlie

[AvonJane in reply to Purrlie]

thank you xx

[Kelmisty]

Ask for a referral to your local Parkinson’s nurse, the consultant referred my mum to one. Also the community neurological team which the nurse will be part of.

My mum was diagnosed in November and they think she’s 4 years in - it’s tough.

Also contact your local hospice, they should be able to offer support as it’s incurable.

[AvonJane in reply to Kelmisty]

thank you

[PennyJack]

Hi AvonJane. So sorry you and your mam are having to go through this. All adviceabove is brilliant and I have followed much of that advice myself, as I care for my husband. However, in my experience a caveat needs to be applied to that advice.

My husband was diagnosed in October last year but probably had symptoms for over 5 years. Trying to get appoint with speech and language takes time. We had a letter 4 weeks ago telling us we are on the waiting list for an appointment. Based on our last referral to this service, I expect to be waiting at least 6 months, unless Brian’s condition worsens and then I can give them a call. OT finally came out this week to assess for ramps, bathroom adaptations, aids for bed, etc. It was agreed we needed the outside ramp and the wet room but that we’d need to undergo a financial assessment. The assessment was completed today and because we have over £340 a week income between us (Brian’s pension and my small private works pension), we would have to fund the work ourselves. The same applied when we were assessed for carers to shower Brian in the morning. This was going to cost £400 a month. Brian needs an electric wheelchair but because he can’t drive the chair himself, he can’t have one. Sorry to be so negative about this but I wish people had told me about all the financial constraints around getting practical help. It seems my finances and savings, which I worked hard for over the years and went without to ensure I had enough income to enable us both to have a good retirement (Brian has no savings or works pension) are to be used up to make life easier for us both. I don’t begrudge doing it for Brian but I do begrudge a system which tells you to save throughout your working life for your pension to only take it back off you as soon as they get a chance.

Good luck and I really, really hope that it does all go smoothly for you. Take care

[AvonJane in reply to PennyJack]

thank you

[Dosco]

Is your mother under the care of a doctor? If so you need a referral to a number of supports. Occupational therapist to put in safety equipment, a dietician to puree food to prevent choking, and so on. As this condition progresses you will find caring for your mother more challenging. In my instance, I had to move my wife to continuing care where she receives care appropriate to her worsening condition.

[AvonJane in reply to Dosco]

thank you