Asking the right questions....

[Careenh]

My mum was diagnosed PSP in February this year after being unwell for a few years. She is having a first a first appointment this week with the specialist district nurse. There are so many questions regarding her future needs but we are not quite sure where to start? My dad is her carer 24/7 and I am becoming increasingly worried about he is coping. Can anyone offer any advice? Thank you all. X

[Kevin_1]

Hi Careenh

This is the best place to have a look.

Everyone is a little different though.

The other things to get in place are Lasting Power of Attorneys, an up to date Will and an Advanced decision. ( or the ?Irish equivalent)? Having the legal stuff sorted earlier is important, but that can wait until after this visit.

You may choose to print some of these out and hand them to the nurse if she doesn't already know. (Some do, many don't).

pspassociation.org.uk/for-p...

Good luck.

Best

Kevin

[Careenh in reply to Kevin_1]

Thank you Kevin. We have already done the POA. Just not sure what the nurse can offer.. but I will take your advice on printing some into re PSP.

God bless. X

[AnaBri]

Hi Careenh, advice from my experience would be: feeding, what's OK, what isn't, need to be careful with choking. Activities or training that could help her. You need to make her room and the whole house more secure, as if it were a child, in terms of sharp corners, furniture that could be dangerous. Sometimes patients with PSP just fall some fall back some go front, you need to be careful with falls. Every patient is different, so it depends on the disease progression. Take good care of her and you'll have many years more together. My best wishes

[LuisRodicioRodicio]

Hi Careenh,

PSP is a disease without pharmacological treatment. The only thing you can do is counteract the symptoms.

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

My wife suffers from PSP. The first 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.

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

2) Prevent cold and flu (vaccine could be advisable) to avoid pneumonia.

3) Prevent solids or liquids from reaching the lungs. Add thickeners to drinks. Relatively doughy food and solids in small pieces. 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): Go up and down 50 steps, walk 200-300 m, speech therapy exercises, exercises ocular muscles. After that he needs to rest at least 30 '

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. .

5) 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.

Drops of tear to the eyes upon request. If you have problems applying the drops "Optrex spray" is an alternative.

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. 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/ has been of 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.

[enzo501 in reply to LuisRodicioRodicio]

Luis ,

Your vision of all the things that may improve the quality of life for the victim of this disease is eloquent . I am the only full time (all the time ) caregiver for my wife .She needs someone for every step ...literally! HER SPEECH AND BALANCE IS MORE AND MORE CHALLENGED EVERY DAY .We tried PT and it was more frustrating than effective.I do stretch and apply lotion daily, we do walk about 400 yds on our every afternoon walk . Her emotional status is almost non existent. Connections between our sons 36 and 39 and grand children have dwindled to a nonchalant ,non responsive state,not to mention our own connection . We are in a drug trial in San Francisco ,and the flying , wheelchairs, at airports , and hotel stays are extremely hard and fatiguing to her ,but she says she wants to continue them for the next generation of this disease . She is 5-6 yrs into this journey ( diagnose almost 4). She will be in a wheelchair for most travel in less than 6 months .She still ,slowly walks with my help and a leg brace that keeps her right foot from turning out .We had it made almost 2 yrs ago and it is why she can walk out of the house (where she doesn't wear it).As you have probably noticed PSP people walk better where the parameters are wide and open ..rather than confined like door openings etc. She can no longer read ,eyes are shot ..not even kindle on lg print and she has no interest in books on tape as she cant follow day to day progress. I appreciate your care giving experience and hope we can find some common ground to comfort the soles that have this shitty disease . The one thing that I do at every juncture of this disease and my thought rationalization is ask myslf about Quantity or quality of life .....she always picks quality ...thats why the end is nearer rather than farther away.......peace/out ......jeff

[LuisRodicioRodicio in reply to enzo501]

Enzo 501. Thanks for your message.

Allow me some thoughts:

- Your extensive dedication reminds me of the time when I also try to get to everything by myself ... until it were so fast that I end up falling and breaking a shoulder of what I have not fully recovered. It taught me to seek help. In my course of caregivers is often the case of the caregiver who tries to reach everything and has a physical or vascular accident.

- The visit of children, grandchildren, relatives or friends appreciates it even if she does not look like it. Socialization is an important piece of treatment.

- We travel. An hour in the car tires her a lot. A trip by plane (one and half hours) needs a couple of days to find the equilibrium again.

- Today I found a couple of friends in which the man has been diagnosed PSP early. He spend a lot of time a day to do gymnastics and speech therapy. Doctors say the disease seems slowed down in its external aspects almost. He walks alone and speaks very clearly. I think that if today we should expect some "miracle" for this disease the path could be intensive gymnastics.

Hugs

[Careenh]

Thank you so much. X

[Duffers]

Hi Darren.

Apart from the legal things suggested by Kevin you need Dns, Ots, dieticians, speech therapists, physios and uncle tom cobley and all. Keep asking questions of everyone you meet. They all have some nugget of wisdom to pass on. Not as much as the collective wisdom on this site but any bit helps.

All the best. Marie

[Duffers]

Lol careenh turned into Darren. Magic