My FIL yesterday complained of his hips feeling stiff the dystonia episodes are coming most days at least once. He has stiffness of his neck. We were only diagnosed about 6 months ago but things seem to be moving very quickly. With with ahead of us I am starting to worry that things are only going to get worse even quicker. I know every journey is different but am I seeing signs that we are headed much further down the line than we expected?
Rigid hips: My FIL yesterday complained of... - PSP Association
There are different types of PSP. Some are more aggressive than others with a life expectancy of 5 years. He may have that form. Or he may be misdiagnosed and not have PSP at all but another neurological disease like Lewy body.
It's normally not a straight line decline but more of a step down. Something will change and then nothing major till the next step down. There are of course things that will hasten a step down like infections, illness or falls. Sometimes you'll even see a slight bounce back up a bit.
My advice is don't get caught up in the "time line" too much. Prepare for the worst, hope for the best, try to keep your FIL safe and comfortable as possible.
Lo siento, PSP ha entrado en tu familia.
Las sugerencias de mis colegas de "chat" son sabias y se basan en sus diferentes experiencias. En mi caso han sido de mucha ayuda.
Esta enfermedad se manifiesta de manera similar pero diferente en cada paciente. Los participantes en chats como este ofrecen prácticas y soluciones para aprender y, a través del método de "prueba y error", logran una calidad de vida con momentos interesantes a pesar de todo.
Por correo privado, le envío nuestras experiencias particulares en PSP-RS y una lista de síntomas mas o menos relacionados con la evolución de la enfermedad que esperamos les puedan ser útiles.
Abrazo y suerte.
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