My experience. ¿Suggestions?

[LuisRodicioRodicio]

Hello!

I am living in North Spain.

In few wors these are my experiences on PSP disease:

My wife suffers from PSP. The first symptoms (difficulty speaking) will be presented in March 2012. The definitive diagnosis was in June 2015 (Difficulty in eye movements).

Palliative treatment of the disease is as follows:

1) Avoid falls: transfer techniques, seat belt, wheelchairs, etc.

He has regularly used a wheelchair since June 2016.

2) Prevent cold and flu.

3) Prevent solids or liquids from reaching the lungs. Add thickeners to drinks.

4) Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): Go up and down 50 steps, walk 200-300 m, speech therapy exercises, exercises ocular muscles.

5) Socialization. Almost every evening, social activity: cinema, city walk, show, museum, conference, visit grandchildren, snack with friends, etc.

5) Palliative medication against depression and insomnia: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline to food; 1 Lorazepan-1mg one hour before dinner.

Drops of tear to the eyes.

We have a part-time hired person to perform gymnastics, personal hygiene and dressing. Another person lives with us with holiday on weekends.

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.

Any suggestions to improve the quality of life of a PSP patient or caregiver will be welcome?. Thanks.

If I can help dont hesitate.

[rriddle]

Looks like you are doing a great job caring for your wife.

[LuisRodicioRodicio in reply to rriddle]

Thank you for your words.

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.

The information we found in the web "CurePSP": psp.org/ has been of big help.

To say that the plan is costly in dedication and economically.

It is critical that caregivers have their own space and fun. The life of the primary caregiver is broken and must be repaired from time to time. Holidays are essential in my opinion.

[abirke]

Wow I applaud you....Spain seems to have it going on...we here in Amercia had to muddle our way through....in fact speaking for myself, I had to learn it either by myself or by people like you on this site who have found better ways of taking care of their loved one .... Goodluck to you and your wife, may God be with you both....

AVB

[LuisRodicioRodicio in reply to abirke]

Thank you for your words.

Each patient seems to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.

Our plan has been designed and adapted at any time 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.

The information we found in the web "CurePSP": psp.org/ has been of big help.

[aliciamq in reply to abirke]

no kidding , Andrea?

[Gracie_Girl in reply to abirke]

Me too.

Best of luck to you and your wife. ❤

[easterncedar]

Your program of care seems ideal, very professional. I'm very impressed. May I ask how you came to set up such a thorough regime? Were you advised or did you come to this yourself?

[LuisRodicioRodicio in reply to easterncedar]

Thank you for your comments.

Each patient seems to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.

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.

The information we found in the web "CurePSP": psp.org/ has been of big help.

[LuisRodicioRodicio in reply to easterncedar]

I find it difficult to know the phase of the disease in which we are and especially to distinguish in the patient symptoms of dementia versus simple reactions of anger or irritation.

[easterncedar in reply to LuisRodicioRodicio]

I think most people deal with those two questions. I was taken by surprise by my man's sudden downturn this past spring after years of steady decline. When he could no longer swallow easily, he decided himself to stop trying, and that was the end. I thought we would have the summer.

Whether issues of temper are caused by dementia or grief or normal mood swings is a question often raised. I don't know how one addresses that, except to treat for depression, as you are doing, and comfort as one can.

And yes, as you say, take care of yourself. That's not easy! Best wishes, ec

[LuisRodicioRodicio in reply to easterncedar]

Thanks a lot.

Luis

[abirke in reply to LuisRodicioRodicio]

PSP has it's own symptom of behavioral decline. My husband never experienced anger, but many patients do. and again I did not think he had dementia, terribly as he could answer most questions accurately. As far as phases or stages, unfortunately each patient goes through all symptoms at their own rate making it difficult to create phases of progress....I wrote a dr (rrobin) that Bruce started declining medically starting around 2015. Diagnosis was in 2013, so his progress was much faster than most patients.

Keep doing what you are doing may I add that you create happy memories. In a way we were given the gift of time as we knew that the things that were put off (vacations family events good books!) were all now imperative to complete...

Make Happy memories....and get away from PSP for awhile....

AVB

[LuisRodicioRodicio in reply to abirke]

Thanks a lot.

Luis

[Althea-c]

Well done and thank you for your input. This forum is invaluable.

What is your wife's day to day life like at the moment and in your opinion what stage is she at.

Althea 💛🙏

[LuisRodicioRodicio in reply to Althea-c]

He wakes up at 9:00 a.m., has breakfast in bed and after take a rest.

-10: 00 Passive gymnastics begins in bed.

Wash up, shower and dressing.

-11: 00 Active gymnastics. Up and down stairs.

Break.

-12: 00 Wheelchair ride through the village and small purchases.

-12: 30 Walk between 200 and 400 meters leaning on the chair and moderately held by the armpits.

13:00 Lunch and some TV.

14:30 Siesta until 17:00 p.m.

17:00 Wash up and dressing.

18:00 Various activities: Walking on wheelchair, cinema, shopping, conferences, museums, etc.

21:00 Return home and dinner.

22:00 Toilet and bed. Listen to the radio.

Around 3:00 p.m. to 4:00 p.m., he usually asks to go to the toilet.

[Althea-c]

You are amazing .... the time and attention you are putting in to your loved one is admirable.

The precious memories you will have of cinema and shopping in the village will be yours forever. Take every opportunity to enjoy him.

Much love to you both. Althea 💛🙏

[abirke in reply to Althea-c]

So true, Althea

[LuisRodicioRodicio in reply to Althea-c]

I have 2 people who help me a lot regularly and the children help whenever they can. Also the friends of always collaborate. The merit is shared.

Thank you Althea and Abirke

[LuisRodicioRodicio]

Thank you for your comments.

The best.

Luis