Getting used to the new normal

[hmfsli]

"Constant change is here to stay" they say and, heaven knows, that's something those who have PSP and their families are more than a little aware of. Every year, month, week; every day it seems sometimes, you have to adjust to the new normal. A loss of mobility here, a difficulty swallowing there, and all the rest that goes with this vile disease. Again and again we adjust, we make the best of it; we adapt routines, equipment, homes, lives. We get knocked down, we get up again, we keep on keeping on. And then the day comes when we say goodbye and our heart breaks and there's a new normal to get used to. A new normal that involves loss and grief and pain and a gap that is impossible to fill. How do you get used to that?

[SharonAB]

Dear HM,

I don't think I will ever get used to it even knowing about the existence of PSP. For sanity - I try to take the perspective of my 11 year old daughter. She has known of PSP for almost all of her life with her unwell father. Just like I - it gets to her sometimes and she vents her frustration. Soccer & basket balls and the nets and the hoop have taken a pounding over the years!

The differences between her father and others she knows becomes more evident with each day But whenever Chloe is asked (& it happens with bluntness and too frequently for my liking) "What is it like with a Dad that is not normal?" She replies with "This is normal for me. What is normal? What is such a thing?"

Regards, Alana - Western Australia

[hmfsli in reply to SharonAB]

Hi Alana,

How are you and Chloe? Chloe sounds like a well adjusted young lady and I am sure that is down to you. Please pass on my good wishes to her and tell her I think she is pretty darn smart.

h

[Heady]

I guess you do, because there is no other choice, if you wake up in the morning, you breathe, you get up. Hopefully, you make it till bedtime. If you do, it's another day got through. So it goes on. Eventually, it becomes a habit and it's easier to get through the day. So it goes on. Finally, you look forward to getting up again and you join the world again.

Thats the theory, yet to put it into practice. Let me know if it works!!!

My thoughts are with you. Keep waking up and breathing! You will get through!

Lots of love

Heady

[hmfsli in reply to Heady]

Hi Heady,

It's early days yet. My sis and I were having a chat today and concluded that one day at a time was the only way to go.

h

[peterjones]

hi hmfsli you have got it in one mate TAKE ONE DAY AT A TIME and make the best of that day peter jones queensland Australia psp sufferer best wishes to you and yours

[jillannf6]

hi hmfsi

you are right wha tis normal??

nothing ini the world makes anyone normal with this iPSP

but we all have to carry on

i am so sorry that your dear mum has gone form this world

I do not believe in God but think hta t our spirit does live on

in our children (if we hav ethem) i n other s etc etc

so we have to do what eve r we can on this iiparticular day

lol JIll

and xxx

[hmfsli in reply to jillannf6]

Hi Jill,

you are an inspiration! I hope you are able to carry on for s few more years yet.

h

[nomansland]

Like life there is no solid answer...the only answer is that life is a voyage and not a destination,it so happens that we,re on a road with cliffs instead of potholes...let us pray for a cure so the people following will not have to endure this hard a ride,keep your hopes up,regards.,Rollie

[hmfsli in reply to nomansland]

Hi Rollie,

I pray for a cure and I fundraise to support research to find a cure. If I can help in anyway to prevent others having to take the same voyage I will do the best I can.

h

[jimandsharynp]

I can relate because that's exactly where I am at the moment. I lost my dear Sharyn May 4th this year. Things are just not near the same. I have children who live one hour and two hours away so they can't be with me every minute of every day. The house is lonely and I seem to see Sharyn in everything within. When things get real bad I call friends who have been kind enough to let me visit them and refresh. The hole in my heart is huge and nothing to fill it. Loss of a spouse with whom you've had a perfect relationship for 24 years is a terrible "new normal". I'm a fighter though and I know, having been here before (first wife passed after 31 year marriage) I will survive and get better over time. How much better and over what time are the variables that are different for us all and can't be controlled. So meanwhile I'll move forward with a bright outlook. After all that's what Sharyn would expect of me. Jimbo

[hmfsli in reply to jimandsharynp]

Hi Jimbo,

To have gone through the loss of a life partner twice is almost unimaginable. I applaud you for your strength and dedication. I hope the celebration of Sharyn's life went well and brought some small measure of comfort.

h

[jimandsharynp in reply to hmfsli]

Yes it is rough going through this grief twice. Oddly enough my first wife of 31 years passed away from another very rare brain disease CJD (Cruetzfeld-Jacob Disease). Same symptoms as PSP but death came in four months not years. I think God had a bigger plan than I. Perhaps He saw I dealt with the first situation well and thus put me in Sharyn's life to help her through the PSP struggles. I actually prayed Sharyn into my life after the loss of my first wife. Went something like this "God please find me another wife without me having to search everywhere and have a lot of bad dating experiences". Long story but He worked the entire thing out and NOT one date, except for Sharyn. I called her my gift from God and honestly believe she was.

Jimbo

[hmfsli in reply to jimandsharynp]

I think you may have been God's gift to Sharyn too.

[zjillian]

Thank you for your thoughts today. You have said it beautifully. The confused emotions, grief, frustration, anger, guilt, love, pain, sadness, self doubt...... all in one day. And it slowly and slowly and slowly and slowly changes worse and worse and less and less of him and less of me and less of us; and I keep wondering if I am doing this correctly or badly and how long can we keep going. I think I am past one day at a time, and new normal. I think I am past doing the best I can. I think I am past keeping on keeping on and acceptance, and asking for help, and taking care of myself, and holding on to God, and love and positive thinking and even remembering the old Bob.....and all that is left is trying not to cry in public or confuse my remaining friends with emotions they cannot understand (because he is STILL ALIVE).

Jill

[wifemo in reply to zjillian]

Jill -

You sound exhausted (reading back, realised you also looked after your father).

Can't offer any practical help, just to say that we know how you feel and you're not alone.

Mo

[hmfsli in reply to zjillian]

Jill,

my heart goes out to you. You sound as if you are in need of help. I hope your friends are strong enough to bear your tears and comfort you even if they don't understand.

God bless you and keep you.

h

[Heady]

Oh Jill, what a powerful blog! My heart goes out to you. I understand most of what you say. My husband is not as far down the road as Bob, by the sounds of it. But yes, I am very angry, extremely lonely, not yet in ready for any real help, but struggling to cope. We all doubt ourselves, are we doing the right thing? is this right? should I really be doing that? How can I possibly go on? The answer to all that, you go on because you have to! because you want to! Because, in truth , you can go on!!!

Everyone on this site is actually coping very well, we wouldn't be able to spend time or effort if we weren't. Yes, we all get down, have huge struggles , even lose a few battles, but we carry on, because our loved ones need us. They have lost everything with this terrible disease, the last thing they need to lose is us!

So, up you get, brush yourself down. You know that you are doing a brilliant job really, Bob still needs you, even if he can't say it!

Most of all, make sure you have time to vent all your feelings here. You know we all hear you, you know we all know how you are feeling. You know we are all here!

Lots of love

Heady

[zjillian]

Oh my! Thank you all so very much. Most of the time I feel disgusted with my self-pity and lack of...strength? It is wonderful, really, to read all your messages. It is good to be able to share and not feel so alone without a map or compass. Here in Costa Rica there are no support services in terms. But also it is seen as a part of life and large families for generations provide support.

Thank you all. This has helped so much. My husband is sitting with me and I am sort of explaining who everyone is and how many many people like him are suffering with his illness and that we are not alone but have a community.

Jill

[nomansland]

We all feel like the next step could or should get easier,I guess that,s where we fall into hope,s hands,then maybe,just maybe ,we can get through another day,we try to talk to someone about daily things but we,re always back to our loved one who is the actual actor in this horrible play....the saying ,NO MATTER WHERE YOU GO THERE YOU ARE applies here to the fullest...as many of you express,even the medical team only recognise PSPs an awful illness but most of them can go to their home and forget it ,which in reality I guess they must,so we can,t run nor can we hide ,we must brave the wind in the dark,going twice the speed limit without lights !!