Words for the day

[JubileeRanch]

Today’s devotional for those of you who might relate. Everyday it speaks to me in a meaningful way.

[Birdman34265]

Hi, without God's love and trust and peace in your heart you will find it hard in this psp journey,do you have a love one who has psp or cbd ?

[JubileeRanch in reply to Birdman34265]

My husband has PSP 🙏🏻😢🙏🏻

[NannaB]

Amen

❤️ XxxX

[JCRy]

Amen.

[Hidden]

I think devotional messages belong to a devotional site. You may not realise that you could be offending as many people as you are helping in promoting such literature. Please think of all people not only of those who believe in God. After all some people might think God actually created and allowed PSP on this earth in the first place !!

[JubileeRanch in reply to Hidden]

I am sorry you might have taken it that way, I totally appreciate anyone’s thoughts on how they navigate this horrible journey. That was just a thought for the day, I do know some of us are possibly really mad at God or no belief at all....as for me I am really mad! It was just meant to share what was helping me at the time. It greaves me that it would have a negative impact on any one, hope y’all know that is and was not my intent.

[JantheNana]

Jubilee after reading your post I went back and read your previous posts because your journey with PSP sounds identical to mine. Like yours,my husband sprayed with a backpack sprayer without protection and it even leaked onto his back. I truly believe that was at least in part the cause of his PSP. Also,like you our dreams of retirement were foiled by the disease. And the anxiety it caused- it was like living a nightmare. Sadly my husband passed away last year,just nearly 2 years after dx of PSP. I am still tormented by what he went through after living such a strong,confident, purposeful life.

And I for one thank you for sharing the scripture. It is what helps me through all the hard times,and there are many. Hang in there,show him you love him every day and try to take care of yourself in the process! Blessings,Janet❤️

[JubileeRanch in reply to JantheNana]

Gosh Nana, I know the Herbicides played a role in this, I just know it!

I have never known pain and disappointment as I do now....I am trying to be normal but can’t seem to....I have gone through anger, wanting to punch someone, ANYONE, now I am in the extreme sadness part....I have moved from a city to the country, not far only 30 min., but I am so extremely lonely, I don’t think I want to be here all by myself week in and week out and weekends if no one visits or I have no plans....I am at a very BIG crossroad I don’t want to take the wrong turn, I just want peace and to feel that what I am doing and where I am is where I am suppose to be....at the moment I don’t feel comfortable here thinking of being here alone...we only moved in July...they literally were packing the house up and moving me the week he got his diagnoses....I went forward and probably shouldn’t have, but here I am....I can go back to our other house which has not sold but I will then have to sell the ranch....so so so so hard and so sad.

Nothing easy about what is going on in any of our worlds.

I wish I could physically hug every one of you, y’all KNOW the journey, not many do!

[Hidden in reply to JubileeRanch]

Have you shared your feelings about the house with your husband? If not please do so. It sounds like you would have more support if you moved.

[JubileeRanch in reply to Hidden]

I have talked to Bob and he really doesn’t care where we live he said he just hates seeing me sad

[Hilltoptim]

Thank you for sharing.

We live in a country that gives us freedom of speech and the freedom to serve and worship God. You have done no wrong by sharing this message.

May God bless you on your journey.

[Hidden in reply to Hilltoptim]

I'm not saying any one has done anything wrong. And for sure, freedom of speech is a wonderful thing. However, some people do think there is a time and place for everything and on such a site as this mindfulness may also be a worthy sentiment to engage with.

[Marilyn_cbd12 in reply to Hidden]

Dear Nader, I am still confused as to why you'd like to keep postings like the devotional off the website. The writer introduced it respectfully, saying that it was for "those who might relate to it." You appear to be someone who does not relate to it, and that does not offend me. I thought that your tone was a bit harsh, and think it likely that you did not wish it to be so. We have to be able to speak our minds and hearts here, to get information we need and to share our burdens. To do that, I think, we need for the website to be a place of refuge and a place where we don't have to worry about censure.

Marilyn

[Hidden in reply to Marilyn_cbd12]

Dear Marilyn, Thank you for your quick reply. Yes, I do relate to the devotional offerings but for me they offer no comfort, in fact, the complete opposite. As I say, freedom is a wonderful thing and everyone is entitled to their own thoughts and beliefs. However, God, in the religious sense is part of a belief system, God is not a fact, but PSP is a fact and another fact is that God, from which ever religion seems to have omitted to send us the cure. That's what depresses me. The suffering is allowed, we all pray and hope for a cure, but there is none!! What's the rationale for that? There is none. That's life and we have to suck it up and suffer along the way. To me that is not love. It's is said 'God is Love' well, it's somewhat lacking in this case as far as I can see. Sorry to upset anyone, but as we all know, sometimes life is very hard indeed and for PSP, he seems to be no help at all.

[Marilyn_cbd12 in reply to Hidden]

Yes, it's hard. How long have you had PSP? Do any treatments help alleviate your symptoms? My husband (CBD since 2006) has seen some benefit from high doses of Sinemet (which, ironically, used to be a diagnostic criterion for ruling out CBD ) . That and physical therapy are the only dependable sources of relief, though, interestingly, the Sinemet seems to be effective with his limbs (got him walking again last year, and relaxed stiff muscles in arms) but not for neck muscles which are now contracted and push his head into a dramatic droop forward. Thank goodness for his reclining chair, as he can watch football and golf tournaments.

Marilyn

[Hidden in reply to Marilyn_cbd12]

Dear Marilyn, Thank you for that kind reply. I have had to think carefully on my reply to you because this is a forum for sufferer and carers. It was my father who had PSP, confirmed at the post mortum. My circumstances were that I had my mother with Altzheimer's and my father with PSP at the same time; both at home in hospital beds. I'm an only child. I could not cope. Ultimately they went together into a nursing home. My mother lasted a couple of weeks but my father lasted six years. All together, I think I spent at least twenty years looking after them. I visited my wonderful dad every day. My mother did not suffer so much but dad did not endure the experience well. I went every where, I took him everywhere I tried every drug etc that I could get my hands on through the various consultants and doctors and still he suffered. He asked for a shot gun. To watch his demise was for me almost beyond my endurance. It was a very sad period for our family and even now, nearly five years after his death, I am greatly affected by it. It is so hard to accept. I am a Humanist. I do not believe in a God and did not even before all this started. Acceptance is hard but those are the terms I choose to live by. Others, of course find a different way. There is no cure for CBD either and I understand how religion and religious text help many people and there are many places to access this support. I'm sure most people have a Bible or a place of worship, a like minded congregation etc close to where they live. I look to this site for other reasons. Yes, sharing experiences surely is one and medical and social service information etc , and moral support, but there are few sites and forums for PSP,CBD etc. and I do feel we do need a special place for such as ourselves. That really is why I wrote about this subject, just because it is a place of special need to sufferers and carers from all walks of life to turn to.

So sorry if I have offended anyone.

[JubileeRanch in reply to Hilltoptim]

❤️❤️💔❤️❤️

[Marilyn_cbd12]

Dear Jubilee, thanks for sharing the devotional reflection. I often turn to the psalms in prayer because they are so full of pain, confusion, fear, disappointment and, yet, hope: a remarkable parallel to what we experience as caregivers and patients with CBD and PSP. I appreciate that you thoughtfully introduced it "for whose of you who might relate." I have understood since I began to participate in this cyber conversation that we are a diverse group and I respect the commitment and courage of all who participate, whether or not they believe in a divine presence in this world. Please continue to share with me what is meaningful to you and your husband. Peace be with you.

Marilyn

[JubileeRanch in reply to Marilyn_cbd12]

I will share on a private post if I find something helpful that might offend someone....

[Marilyn_cbd12 in reply to JubileeRanch]

Dear Jubilee,

I guess I am concerned that if we start to have "politically correct" speech as a ground rule here on the website, it will discourage people from participating. I am ready to listen to all who post here, whether they find spiritual truth in Jesus, Yahweh, the Koran, Buddha or Lenny Bruce. I for one hope that you -- and others-- will continue to post and share what is closest to your hearts and not worry about censure. (As long as it's legal and doesn't harm anyone, of course, but it seems to me that most posts I read are from compassionate individuals who are just doing the best to cope with the very difficult circumstances they are in. )

Marilyn

[Hidden]

Dear JubileeRanch,

I truely am sorry at your dilemma and my heart goes out to you. How to help, I do not know but I think what would I do in such a situation and I respectfully offer a few suggestions. Perhaps, in order to help you look at the situation more clearly you could write down on some sheets of paper, one for you and one for your husband. Then draw a line to divide those sheets in half and on one side put the pros for you staying put where you are and on the other side the cons. That's on your sheet and his sheet. He has been able to tell you some of his thoughts but check them out in your own mind. As he becomes more poorly, will he too feel more isolated and miss friends? That's one consideration. If you move back will you have more support via social services and equipment. I really do not know your full circumstances. Do you have animals on the ranch to attend to and need your time? How may it be for you both in the future there?Since your old place is still available, would he in reality be more comfortable in familiar circumstances? This was very relevant for my father. Any change he found difficult to adjust to. Perhaps there is a financial aspect to all this for you?Ask yourself how do-able is a move back possible for you. I'm so sorry. It really is a very sad time for you both. So very hard to cope with. You are going to have to gather strength from somewhere, but you have your faith and friends on this site and I'm sure you will find the right way for you both. It will just take a little time to sort it all out. Best wishes.

[Hidden]

Sorry, JubileeRanch, I've just had another thought which you might like to consider, what if something should happen to you? How would your husband be fixed then? There is no certainty in this life. Any one of us could be run over by a bus ( as they say) any day!! We're all going in one direction, some faster than others and some more unexpectedly than others. Do you have a good family support network. There are so many aspects to your situation. Doing something practical like writing out some lists of your thoughts might help. Again, best wishes.

[JubileeRanch in reply to Hidden]

Thank you Nader....kind words

Yes, I do have family support, our oldest son lives 20 min. from us with his wife and 2 children, our youngest lives farther but he comes in from time to time.

I do have to take care of myself! I have been falling apart everyday. Not good. I have journaled quite a bit, that helps some....

[Hidden in reply to JubileeRanch]

Sometimes, when people don't know what to do it is advised to do nothing just then. Maybe, after you have had another think and tried the list idea you might decide to do nothing just now. With this disease you don't really have a sure path to follow, I think. Maybe your husband will be well enough for you both to enjoy a year or more on the ranch. Maybe see a whole year through the seasons so you have lovely memories when you have or want to move. Perhaps when the time comes to move your old house will not meet your or his needs! Who knows? Perhaps take a little time to recharge your batteries! I'll leave you be now. Good luck with it all. X

[Hidden]

Yes, what has happened to you is enough to make anyone fall apart. Now, you have to be brave and that God of yours will help you. I expect everything feels like so much of a jumble, just seemingly you don't know where to turn. It will resolve itself, you have family and friends, and you must ensure you get enough sleep to help keep your mind clear. God helps them who help themselves (they say) and taking things calmly and slowly, you will come through it. Try what I suggested with the pros and cons ideas. The journal idea is great but perhaps having to sift out the pluses and minuses you might get an idea of a plan. Love to you both. X