I am thankful to have stumbled upon this community. My 72-year old father was recently diagnosed as probably PSP after many months on Parkinson's medication not helping at all. It's a fairly daunting diagnosis and we are of course in a bit of disbelief that my super active, marathon running, physical education teacher, father, is currently having difficulty walking and cooking and doing the most basic of tasks. He is devastated and depressed and feeling a bit hopeless at the moment. I am looking for alternative resources to support him both emotionally and physically, and also a framework for thinking about the future and the changes that are coming most likely sooner than later.
Very thankful to be here,
Kellie
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KellieGlessner
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Sorry that your family has received this devastating diagnosis, but you're in the right place for all the advice and support you need.
For me, the most important thing right after receiving my hubby's diagnosis was to do lots of research. While it may be daunting, information is your best ally right now, so you can (1) start to get ahead of the various bits and pieces you'll need to support your Dad on his journey and (2) depending on where you are in the world, to start getting the more formal help (medical, therapeutic, financial etc.) in place.
You should consult the various organizations: psp.org/ are in the US, while pspassociation.org.uk/ are in the UK. Great resources for information about the disease, but I always find that the best practical answers came from the lovely people on this forum who live this every day. Take a bit of time to read through some of the previous posts on the forum, and then I suggest you start by asking specific questions, rather than something quite general. We have all had slightly different experiences and have found different solutions to all aspects of this disease. So you'll get lots of really practical steps. Don't feel shy! I'm trying hard not to write too much, as there is simply too much to share and I'm not sure what's relevant to you right now.
In terms of the depression, your local PSP association may be able to refer you to in-person support groups, which can be helpful both for you and your Dad. My hubby didn't ever want to go to the support groups early on in the disease as he didn't want to see others who were further along, but I know others on here have found it helpful. Otherwise a psychologist can be helpful, and our palliative care doctor that we found later, was a huge support too.
You'll need a team to help you through the disease: we had a physiotherapist, biokineticist for hydrotherapy, SALT (speech and language therapist), neurologist, palliative care specialist, financial adviser and lots of friends and family. And of course, you have all of us
Can I echo what Sawa said ? I suffer from PSP and things started really moving through therapists, not only the physiotherapist , the occupational therapist and the Speech and Language therapist. The Bladder & Bowel specialist nurse also helped. They have made my life better.
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Incapable to brush teeth
Physiotherapy update
A slow growing pet peeve
When will this end my dear lord?
