Hello all well the other day I called Charlie's doctor to get an earlier appointment. The nurse left a message on the phone saying we can give him a sooner appointment but there's nothing more we can do for him 
but we are not ready to give up we are going to see another doctor in New York. Wish us luck
Thank Margie
Hi Margie
Don't give up!
The neurologists might not be able to cure this illness, but there is an awful lot they can do to manage symptoms and make the person more comfortable. Our neurologist has been indispensable for this alone.
Wishing you both the best
Kevin
Dear Margie and Charlie,
Good luck with your new doctor! This desease is so on-going, we know there's no cure yet but over the years every new symptom will need dealing with so how can your present doctor say he cannot help? Hope this new one is good, don't give up. All the best to you both, Lesley
Agree good luck with the new doctors, hope all goes well. Yvonne xxxx
We had such a good local GP, nice nurses, all very friendly. He had us come in regularly, and there was always something to talk about, even if there was little practical action to take. It made us feel safer, comforted. I rather miss those appointments. I wish everyone could have such care. Me, too. The doctor has too long a waiting list for me to become his patient!
Dad's neurologist told him at last visit there was really no reason to schedule anothet appt. He said medically there was nothing more he could do. Dad's GP and nurses took over the day to day stuff.
Ron
Hello!!
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:
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).
Palliative treatment of the disease is currently as follows:
1) Avoid falls: transfer techniques, seat belt, wheelchairs, to adapt the bathroom, etc.
He has regularly used a wheelchair since June 2016.
2) Prevent cold and flu (vaccine is 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
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.
5) Palliative medication against depression and insomnia: 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.
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 how old is the caregiver is and his/her medical history.
The bottom line is that jobs and occupations of the primary 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.
Loss of Hope
Hoping for cure
Losing Hope
How do you pray or keep hopeful?
