Father is 79 and has was diagnosed with dementia for the past 3 years. He was living with my sister and left unattended during the day while she and her husband worked. He had a terrible fall and broke several ribs and had a brain bleed. Spent a month between the hospital and rehabilitation center. It was then that I chose to take him in to live with me.
I took him to the neurologist last week where it was confirmed he has PSP. I feel so angry that all the other 3 neurologist he has seen have missed it. He has all the symptoms to a T. He cannot walk without my help and I have to help him eat. He is choking frequently and it is heartbreaking to watch. I feel like I am alone in the world sometimes. Thank you for letting me be here
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JodiP
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You are definitely not alone here! We know what you're going through and will help with your questions or just give an understanding ear to your rants!
Be sure to check out the historic posts - there are 7 years worth covering every aspect of PSP & CBD experience you could imagine.
Also, you probably know there is no cure and it will get worse - so do start thinking about how to access support when he's too heavy to lift, can't toilet himself, can't eat,etc.
And most important: plan how you will get respite care for him while you get a break for yourself. If you wreck your own health, you can't be of any support to him! I'm sure you know all this - but we do encourage each other to get breaks and respite, however possible.
Welcome to the site. Ask questions, read old posts, there is a wealth of info here. I'd suggest, if you haven't, pick someone in the family and get a power of attorney and healthcare in place. I am going to assume, normally bad idea, that there is no spouse for your dad since he lives with you. As a child there will be limitations as to what decisions can be legally made, least in the US.
Welcome to the site no one wants to join but is a sanity saver.
PSP is really hard to diagnose as the odd symptom in isolation can give many different pictures - it is not until more pieces of the puzzle fall into place a diagnosis can be made.
It is a tough journey so please as others have said get some support in place and carve time out for yourself
Love Tippy
Welcome. I don’t know what I would have done if I hadn’t found this site. Reading all the posts I found out what could possibly happen. No two cases are alike. When something does arise I have usually read about on here already. This place also makes me feel not so alone in dealing with this. Being here you will get emotional support and useful information. As for the doctors not knowing most of us have been through that as well.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.
So sorry to hear about your dad. My husband, age 66, was diagnosed with PSP a few months ago, although he had been presenting numerous symptoms for about the last three to four years in some fashion. We first saw a neurologist that IMO was a quack, and wanted to sell us a bunch of electrical stimulation tests/treatments and supplements. We went elsewhere, and have found a competent and caring neurologist.
I am taking it one day at a time, continuing to prepare healthy meals, and making sure that my husband gets plenty of excersise daily. Exercise is so important in this journey..........
Welcome to the family...sorry that it's under these circumstances. You'll find plenty of practical advice and support here. If you just want to rant... go ahead, you won't be the first. PSP is a difficult journey, you'll need this group in your corner.
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