Just wondering

[GAILINGRAM]

Not many people from the south seem to have PSP I have many questions and would like to hear PSP pt and caregivers response. My mom had weakness on left side now starting on right side she's on feeding tube. She in pass month has lost movement in her left leg. We have to get her from bed to wheelchair and then to her recliner. Her walking days have left her. So is going down so fast! Does anyone know if she will be here by Christmas. She doesn't write, talk,can't see just not my mother anymore . Any ideas would be helpful.

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Has she been diagnosed with PSP? Your description sounds more like CorticoBasal Degeneration (CBD), that often starts on one side of the body, but then affects both sides.

Both with PSP and CBD there are so many variables and severities that it is not possible to be specific about the length of the progression and survival times of these type of neurological diseases.

Hope your mom has a neurologist overseeing her condition.

Look back on this forum and site to access information about PSP and CBD.

[SharonAB]

Dear Gail Ingram,

Ah Christmas...I used to work with that as my marker and use it to make plans – Not anymore...

Neurological illnesses are very difficult to understand and I am yet to find a person who accurately knows what to expect next with PSP. What goes wrong with the body at what stage and for how long varies enormously from person to person. I have read from many people who report they have not received a formal diagnosis until every symptom has presented itself for quite some time, and others say there have been several misdiagnosis before the 'right' one has been found, and others who will never display all the symptoms. I tend to compare PSP to someone with a bad deep-seated infection – what will happen today and tomorrow is unknown – Perhaps the medical professionals involved with the care of your Mom can guide you?

My husband was diagnosed with PSP many years ago (his eye changes were very evident) but it is only now that he falls backwards. Each person’s symptoms seem to vary quite enormously and at quite varying degrees. When my husband becomes immobile, how long will he be around? Who knows?

I have also found that there are many 'unwritten' taboos with mentioning an illness that cannot be solved with medication. It may also apply to wear you live. It is a tread softly area - perhaps media exaggerated - but nonetheless it appears that there is a big number who do not wish to recognise that neurological illnesses like PSP exist in their community and don’t wish to talk about it. I know my husband’s family will go to great lengths to suggest here is nothing wrong with him and will probably hide details from their next generation. Yet on the other hand, in total contradiction, there have been people who want to know and without prompting, ask where and how they can help my husband has received assistance well beyond what I could imagine.

Perhaps that is what life is about sometimes - three steps back, one-step forward.

Regards,

Alana Bean – Western Australia,