My hubby is in 3-4 years diagnosis for PSP. He is still able to care for his daily needs albeit very slowly. I am hoping to gain insight and tips on how to take care of a loved one at home so that I am prepared and what help there is available in the US . I am already in the Health Unlocked forum for PSP.
Newbie here!! I am in the US Any more peopl... - Care Community
Hi daffodil48. A very warm welcome to our Care Community. I'm not sure if there are any more Americans out there. I'd guess there are a few, and that they will get in touch, but in any case I hope you'll feel welcome to join us and post here any time you want.
You might find some differences in the way things are run (or not, at the moment), here in UK, but fundamentally we are all sailing in the same ship, so I hope you won't feel strange here, and maybe you can give us a perspective on what it's like as an American carer and also pick up some general tips on some aspects of caring in general.
You clearly understand that caring can be quite a challenge and, if nothing else, we are only too happy to be your 'shoulder' whenever you might need one.
Welcome daffodil, good to meet you.
I’m not sure what you may need in the future for your dear husband but I dare say everything would be available in the USA as here. Maybe grab rails in the shower and around the home. I’m sure you are doing and will continue to do a wonderful job in caring for your husband. Take care xxxxx
(Are you on smartpatients also? Your name sounds familiar. 😉)
Anyway, I am in South Carolina; our neurologist is in Augusta GA. It sounds like our husbands are similar in their progression of PSP, although we’ve had quite a setback this week. Bob was diagnosed with “foot drop” syndrome ... something to do with a pinched nerve in the leg. This has caused him to be very unsteady and he falls constantly.
Prior to this, we had gotten an order from our primary physician for a rollator walker. Here’s the deal with Medicare paying for this (at least in SC) ... Medicare authorizes only one vendor in the area to provide DME. I had to call them to get the name of the one company in our area, no going to our hometown pharmacy. We took the order to the company and then they were supposed to get the visit notes from the doctor, as well as a signed certificate. Unfortunately, in our case, this company has been unreliable in their process and, after two weeks, we still don’t have the walker. (I will be hand delivering paperwork on Monday!)
All this to tell you ... get a walker now! At the time we asked the doctor for the order, Bob wasn’t necessarily ready. Now with this foot drop, it is a must!
(Where in the US are you?)
Hello, daffodil48 and welcome. I am in the U.S., diagnosed with pernicious anemia (PA). It might be helpful to know how you came to this pernicious anemia site. Many PA patients have had neurological problems. My opinion is that in the U.S. PA is often viewed as just a blood disorder, and many doctors dismiss it if blood levels of B12 are normal. But you can have normal blood levels of B12 and still have neurological symptoms. What prompted you to come here?
I am in the US in Nebraska caring for my husband at home with PSP diagnoses. Kind of lonely out here. Such a rare disease that support groups are too far to go. The doctor is sending physical and occupational therapy out this week for evaluation. I hired a lady with nursing home experience to help once in a while and she stayed with him whileI went to church on Sunday. This is a 24 hour job and I do not find much time to write, but someone in the US could be very helpful. He has progressed from tending to his daily needs to me helping with all. Nancy