Newly diagnosed father in law

[Ellenmck]

Hi everyone, my father in law has just been diagnosed with PSP, although we believe this has been going on for years now and struggled to get a diagnosis. With is being such a rare disease any information would be greatly appreciated, as he is only 60 and we as a family want him to have the best quality of life he can.

[Birdman42]

Hi Ellenmck. As everyone will say to your post ‘sorry to see you hear having to cope with this disease’.  Almost everybody has gone through your experience of years of miss diagnosis so please don’t beat yourself or the medical profession up just accept and move forward.  We, my wife has PSP, are UK Hampshire based and here are a few pointers.

No two journeys through PSP are the same, the Tau protein gets at different areas of the brain at different rates in everybody so do not expect a set sequence of events

Join the PSP association AND your local group they are a mine of information

It may sound premature but get referred to you Local Hospice they are a fantastic source of help both for yourself and your father in law

Make sure you have wills, power of attorney, do not resuscitate (your father in laws decision), advanced decision to refuse treatment (your father in laws decision) completed.  The last two the Hospice will help you with.

Have discussions about having a PEG (feeding tube device) fitted.  You will find two camps the pros who want their loved one to have a longer life and easy access to food and the cons (my wife amongst them) who do not want a long life of total dependence and to enjoy the taste of food for as long as possible.  Again your father in laws decision.

Read about PSP the Internet is a magnificent source of information. 

You will notice I have said nothing about the disease and what to expect.  From our caring perspective the key is the first and last words, progressive (no treatment, no remission, no cure) and Palsy (Middle English for paralysis). PSP is the inexorably slow paralysis of muscles, arms, legs, voice, eyes, throat, bowels the list goes on and it can happen in any sequence.  I’m not trying to frighten you this is a horrible disease for the person affected and a totally draining one for the carer whose on duty 24 hours per day every day of the year.

The best thing to do is read the posts as they come up on this site they will give you an insight on what to expect.  But remember one thing ‘no treatment and no cure’ don’t have false hope just plan well, learn from all sources and accept it’s a long frustrating debilitating journey for both your father in law and you.

Take care of yourself and especially who is the principle carer.  Alan

[Ellenmck in reply to Birdman42]

Thank you for your response, We are taking each day as it comes and trying to make as many memories with him as we can with our children and his other grandson. Although we have done research in ways to prolong the deterioration and to make him more comfortable at times it's like banging your head against a wall. Someone on the feed has spoken of increasing their vitamin b and vitamin d levels to promote nerve stimulation and growth are you aware of any truth in this? Another question I was going to ask was if there were any aids to help with eating and drinking for him as this has been an issue for him.

[Birdman42 in reply to Ellenmck]

Hi Ellenmck There are many supplement type things suggested but I have nowhere seen any scientific backing - the phrase ‘hope springs eternal’ comes to mind because what you are asking is can the progress of the Tau protein be halted or reversed and the answer so far (that I have found) is NO

With regard the drinking I assume he has seen the Speech & Language therapist and been prescribed drink thickeners but he will probably be having problems drinking.  You have children, think back to the type of ‘no spill’ cups they used when they were small, diaphragm (Munchkin) cups, cups with lids and straws etc.  My wife takes to bed 4 diaphragm cups and drinks some of them overnight (no spill on the pillow).  There is also the ‘nose’ cups.

For actual solid food we have been through the ‘cut it up’ and ‘cut it finely’ stage and are now going through the puréed food stage.  I always put my wife’s meals out on the table as if it was a normal meal, cut it up in front of her, then take it in the kitchen and put each part separately into the food processor before taking it back to the table to eat.  You can use the food processor to chop it as fine as you like - my wife's is now like a fine soup.  You will need to add liquid to purée it but this can be water, milk, gravy, wine sauce, etc., also add herbs and spices.  Let your imagination run riot a food processor will chop anything.  My wife’s latest is Chocolate Eclair puréed with milk.  None of this low-fat nonsense - everything is high fat, high protein, high carb.  You have to use your imagination and putting it on the table as a ‘normal’ meal first works wonders for their ego.  My wife takes from 3/4 hr to 2 hrs to eat her meals so the microwave gets multiple uses to heat it up again.

We have purchased disabled scoop plates also look at disabled cutlery.

Take his weight every week and chart the results to see if he is loosing weight (charts are better than list of numbers - pictures speak a thousand words).

Hope that helps.  Alan

[LuisRodicioRodicio in reply to Birdman42]

👍 Excelent.

A big hug.

Luis

[Rose1sunflower]

Thank you Birdman42 excellent replies. You summed it up so well.

I would add, do refer yourself to Speech Therapy and Occupational Therapy for help with swallowing and feeding, don’t wait to be referred, (also long waiting lists), so don’t hesitate. I have learnt in the various groups there is a great difference in support given in different counties. Many health professions, support services do not understand yet the requirements of PSP sufferers so are not able to offer help, so we have to go to them.

Use your local PSPA Carers groups, lots of helpful information and support.

[timbowPSP in reply to Rose1sunflower]

Well spoken, Rose. (from a Worcs PSP 'sufferer'). So far I have been fortunate and have had a good path. Mind you, I have been very proactive for past 4 yrs. PSP = Please Stay Positive. .... TimbowPSP

[timbowPSP]

HI EllenM, those replies you've had are spot on! I am 80 and was diagnosed PSP 4 yrs ago. AS soon as I found out I put myself on a regime of targeted Exercise, Therapies, Diet and Supplementation. I want to avoid gtrugs!Past 4 yrs I see I am going downhill, but mostly quite slow. I have documented what I have put in place (with my partner/carer), and many things to look out for, be aware of, and action to take. I have just completed my latest update, and will love to send it to you. Best is by email, so will send right away if you tell me yours pls? Sounds like you are heading in the right direction with you F-in-law! Very best wishes. TimbowPSP xx

[TBoyles in reply to timbowPSP]

Hi, I would very much like to see your regimen as well for my husband if you would be so kind to send me a message.

[timbowPSP in reply to TBoyles]

Happy to send my receent Update, but best to send by email. So pls send me ur email address. Thanks for that! Timbow PSP

[LuisRodicioRodicio in reply to TBoyles]

Hi TBoyles!

I'm sorry PSP/CBD/ etc. has entered your family.

Despite having an effective, efficient and gentle GP, the necessary scheduling of visits to his office or to the emergency hospital, the necessary displacement, always complicated, the "roller coaster" of more or less banal symptoms that PSP generates, many of them unforeseen and repetitive, led us to a certain experience that, together with the possibility of consulting by telephone with some medical friends and family at any time, allowed us to alleviate the symptoms quickly until hours or days later we could consult with our GP.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the support of a GP and the "trial and error" method, you could achieve a quality of life with interesting moments despite everything.

I am not a phisicyan.

During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the those notes-document with our experiences and our informations are of your interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

Note.-The aforementioned documents include some photographs in "jpeg" or "Excel" charts that the PSPA private chat does not support and are canceled in the copy that I include in the private chat. In that case, if of interest (pictograms and communication boxes, the description of symptoms of the different types of PSP et cetera) the only solution is to send it by email to a "gmail" or similar email address. If you are interested and to avoid unnecessarily spreading your email, I suggest you use the internal "chat" channel of this website.

[LuisRodicioRodicio in reply to timbowPSP]

Hi timbowPSP!

I'm sorry PSP/CBD/ etc. has entered your family.

Despite having an effective, efficient and gentle GP, the necessary scheduling of visits to his office or to the emergency hospital, the necessary displacement, always complicated, the "roller coaster" of more or less banal symptoms that PSP generates, many of them unforeseen and repetitive, led us to a certain experience that, together with the possibility of consulting by telephone with some medical friends and family at any time, allowed us to alleviate the symptoms quickly until hours or days later we could consult with our GP.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the support of a GP and the "trial and error" method, you could achieve a quality of life with interesting moments despite everything.

I am not a phisicyan.

During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the those notes-document with our experiences and our informations are of your interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

Note.-The aforementioned documents include some photographs in "jpeg" or "Excel" charts that the PSPA private chat does not support and are canceled in the copy that I include in the private chat. In that case, if of interest (pictograms and communication boxes, the description of symptoms of the different types of PSP et cetera) the only solution is to send it by email to a "gmail" or similar email address. If you are interested and to avoid unnecessarily spreading your email, I suggest you use the internal "chat" channel of this website.

[Troubleandstrife]

Your wife is lucky to have you. Reading about the care and patience with which you feed her stirs up some guilt and regrets since we chose the feeding tube route, mostly because my husbands choking and coughing following meals was beginning to traumatize his barely teenaged children and I was constantly worried he was getting dehydrated because liquid are the hardest to swallow. That feeding tube ultimately gave us the time and freedom we needed for me to bring my husband back to his native England from the States where we had been living. My husband died last April and hindsight is 20/20, I know. But all this to say, you are doing such a good job with your wife. Take care.