I have an analogy I use to describe PSP patients and caregivers. I call it the PSP "road". I found that the PSP "road" has many twists and bends, pot holes, bumps and mud. It also has hills and valleys. Because the "road" has twists and turns all patients aren't on the same "road", at least not at the same time. If you are on the same "road" you can be sure there will be a fork ahead and you will part ways with the other PSP person. Often a "hill" rises on one person's trip or perhaps their “road” is smooth while others are having bumps, slogging through the mud or maybe a "flat tire" (breakdowns). For this reason both patient and caregivers are on a unique trip. Yes some of the "scenery" and stops (symptoms) are the same or similar but the actual "road" my be very different. It's frustrating. You are on this "road" and don't know when the "dead end" will come much less what you may encounter along the way. You stop for fuel perhaps a potty break then back on the "road" again. There are no maps for the trip and that makes it terrible. You can call friends also traveling a PSP “road” but they are on a different road or ahead of you on the same "road". It might be raining, cold, and dreary where they are at the moment while you are motoring along on a smooth patch in sunshine. They may call back "Watch this turn coming up" and have advice to help "Stay to the right and watch the construction area". Hope some of this makes sense to someone on the "road". If you miss a turn do a U-turn and go back where the road is smoother but as you turn back on the correct route be assured the road will change again. The journey for my Sharyn and I has reached a dead-end but we are familiar with the "road" and are here to help guide you and hopefully avoid some of the pot holes. We may even suggest a few restaurants (aids) to help you; the places we found helped us make it to the end. Oh, by the way avoid those hitchhikers (feeling sorry, worry, down in the dumps etc. They won’t help you). Don’t pick any up hitchhikers along the way. So relax, no matter where you are on this trip there are lots of traffic police and road service people to give you help when you feel “lost”. It’s hard but enjoy the trip because when it’s over you’ll miss the trip and your traveling companion. You two will never take a trip again.
Hugs to all, Jimbo