Have you ever thought about this?

[jimandsharynp]

I hope none of you will allow PSP to define you. My Sharyn would not let it define her in any way. It is easy for patient or caregiver to get in the mode where you are relinquishing some tiny control to PSP and it is creeping in to define you. Please, don't let that happen to you. It's not a good place to be.

[marytea13]

I tried to reply but got cut off! Yes Jim I try to control my condition/situation v difficult at times Mary

[Heady]

Hi Jim,

You are so right. Was doing that until recently. Am trying to book a holiday, got very bogged down , looking for right hotel, no stairs, showers only, etc,. I was just desperate to get away, even for just a night. Eventually, just told PSP where to go and booked our favourite hotel that we use be regulars. Yes, the hotel had stairs, so it took us longer to get up and down them, but S survived. We even managed a walk,along the coastal path. Not our usual 6 mile hike, but we were out there enjoying.

I think that's the point, you can still enjoy life, even doing what you use to do, but down scaled, at least you are living, not just responding to this dreaded disease.

Lots of love

Heady

[jimandsharynp in reply to Heady]

Heady, Thanks for a great posting. I hope others will read it and be inspired to, as I say, "go and do". Jimbo

[NannaB]

Good advice Jim.

Nanna B

[annielee1]

You are absolutely right. My husband died in October but all the while he had this horrible disease we tried to enjoy life as much as we could. Short 2 day trips just to get him out of the bed & away. I treated him just as usual even though he was bed ridden & very, very hard to understand. I would joke with him, give him a hard time, argue, & just love him for his total commitment of not letting it get him down, never complaining. So we would do as much as we could & I reflect on those days & so glad we did. I still miss him dearly.

[jimandsharynp in reply to annielee1]

Annielee, Yes, I'm missing my beloved Sharyn who passed on May 4 this year. I'm sure I'll get better but know I'll never totally ever be the same again. Thanks for responding and maybe it will inspire others to "go and do" while they can. Jimbo

[annielee1 in reply to jimandsharynp]

Jimbo, Yes I knew about you & Sharyn & her recent death and I said some prayer for you. Your relationship with your wife & the decisions you two made were so much like Buddy & me. I have been following you & others on this website for a long time now. It helped me so much since most people don't know what we go through.

[jimandsharynp in reply to annielee1]

Annielee, Thanks, my goal is to help others as much as I can. The experience of PSP is not the same for everyone traveling through it. However, I think there is wisdom gained by all who experience this disease. That wisdom needs to be heard just in case it MAY help another person. I'm sure some tire of my postings and think "Who does this guy think he is?" but that won't stop me from giving advice, insight, and suggestions to others. I don't know it all but I certainly have some wisdom and knowledge to share. Thanks for following my posts and I can detect you and Buddy to be special. Jimbo

[wifemo in reply to jimandsharynp]

Hello Jim -

I always look forward to reading your posts, so helpful and encouraging.

Hope all went well on Friday, another hurdle over in the journey to move on.

Hugs, Mo

[jimandsharynp in reply to wifemo]

Mo, Thanks for your kind comments, much appreciated. Yes, the Celebration of Sharyn's life was difficult to get through. I broke down more times than I can count, as did my family. I wrote and gathered everything for the service (scriptures, poems, eulogy, video of photos, music). It took time to put together because I couldn't work on it for long without the tears coming. Everyone said "I have never been to a more beautiful memorial service". Sharyn deserved the very best and that's what I tried to give her. Jimbo

[Hidden]

Dear All,

I think that by definition, a serious disease implies that the life of that individual is affected, emotionally, spiritually, physically, socially and in any other aspects of the human personality that you care to mention. I think that the person suffering the disease should be guided by their own feelings and wishes and, if they do not want to do something, then they should be respected and listened to. To take even this control from them is, in my view, a form of abuse. They are no longer being treated as an adult but rather more like a child. In my experience of various terminal illnesses, once that diagnosis has been made the individual strives to maintain his/her original 'normal' life. They must be allowed to 'pace' themselves according to their own judgement. We can never know exactly how a poorly person really feels and a danger may arise if they are encouraged or cajoled into doing things which they used to do but now may have difficulty with, simply just do not feel like doing any more or be extra stressed by. Neither should feelings of guilt enter the equation by the suggestion that they are not 'fighting' the disease or that they are 'giving in' to the disease. Each person reacts to such serious diseases in different ways for many different reasons and in my book, that's fine and we, as carers must tread a careful line as to how much to encourage and when to 'back off' and 'go with' the direction and wishes of our poorly loved one. This does actually link in with the other blog on this page as with PSP the diagnosis helps us to know something of what is going on e.g. stages and progression and thus helps us to assess various situations more intelligently (I hope!).

[MOMBCD1]

jimbo, you took good care of sharyn. what about if a person has no one?

[jimandsharynp]

MOMBCD1, Do you really mean you have no one? No spouse, children, siblings, parents? Are you in the USA or UK? Where ever you are you need to start now finding out how your healthcare system works and what it can do for you. Not only at the point you are at but as your health deteriorates. You might find more support than you think exists if you probe enough and deep enough into the system. Next, find out what Hospice can/will do for you and what the qualifications are at each point in the disease. This should be a long, long, long chat where you find out the answers to all the points you will be facing (no mobility, no speech, no eyesight, etc.) in the future with PSP and when and what Hospice can provide. Start now and begin checking on benevolent organizations other than Hospice that may offer you assistance. There are many resources out there if you look around. If you aren't in a PSP group get in one because they can help you. If there isn't a group in your area there are some on-line groups (using voice over the computer) you can participate in and gain knowledge. I am here to help you so don't hesitate to ask questions. You are not alone! Hugs xx Jimbo