I'm a PSP Caregiver. I have taken care of two PSP patient 67 lady and 63 gentleman years of age respectively. The 67 year old lady passed away last year in October she had lived with PSP since 2015 when she was diagnosed.
In January 2016 the symptoms started progressing real first its then the Family took a drastic decision to have me as a 24 hour Live In Caregiver. In the two years we both learnt a lot about the disease. We became close and inseparable. I cared for my Friend like she was my own mother. In my 2 year of living with my friend, I learnt a lot about PSP disease and Care. I took her to doctors appointments, traveled , attending support groups together, going to the gym everyday, shopping, played and prayed together everyday. I basically did everything for her. Currently am on holiday in my country Kenya after she passed on. I have a lot of experience and information that helped us go through the journey together. With the grace of God we over came different challenges.
Feel free to ask any question related to PSP care, will be gland to be of help.
Written by
katiesho1946
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I am sure the families are grateful for your care of their loved ones. Sadly we caregivers usually know more then the medical teams about how to do everyday things for these patients. Good for you in learning about the disease as you cared for them!
Thank you for your share. It is helpful. My son died of PSP at 55 years of age, after about 3 years and 3 months of symptoms. He had had a PEG installed (after 2nd bout of aspiration pneumonia) and decided after 5 weeks of steep decline to stop being fed. I have seen people with PSP last a short time like my son, and others going on a 6th year.
You are a special person. Most of us are caregivers because we are family members of loved ones with PSP/CBD. You however have chosen to show love by caring for others with this cruel disease.
Hi Katie you must have picked up a lot of experience,my Kathy is in her
4th year of psp and is near the last stage,apart from speech and swallowing, movement, balance problems,the one thing concerns me is lack of control in mouth movement,she drinks out of a sippy cup with her teeth shut ,so most of it runs down her neck, when spoon feed she
clamps down on the spoon, it seems to me she will lose control of opening her mouth and won't be able to feed , unless with a tube is this
I really gained a lot of experience with my two psp friends, it s sad it gets worse by the day. The lady was on study trial in California. I must say she gave up on the study and choose death with dignity. This was the saddest thing ever in my life. After diagnosis she lived 3 years 6 months.
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