Can anyone help me accept what is ahead, ... - PSP Association
Can anyone help me accept what is ahead, not knowing is hard.
Dear Lucille,
Sadly, its difficult to tell. Everyone is slightly different and no 2 people have the same symptoms or rate of progression. The best advice I can give you is take one day at a time.
Accept that there will be good days, bad days and downright terrible days. Ask for as much help as you can get and visit this website and the PSP association website when you can.
If you read through old posts on the PSP association forum you'll get some idea of what to expect, but as I said, there is nothing set in stone about this disease.
Good luck
Love Kathy
Dear Lucille,
I think we all would like to have some idea of what is ahead but, as Kathy says everyone with psp is slightly different. Having said that, as a family we are relatively new to psp and reading the blogs from others has been helpful, but also depressing when we read about the potential difficulties for the future. Also reading the blogs leads me to believe there are a great many similarities between sufferers. Certainly my husband has had some dramatic falls, he has difficulties with his speech and occasionally swallowing, his walking is slow (he use to be very atheletic) and his thinking can be very erratic at times, this is from a man who use to be so logical in all his dealings in life. We have been told by the neurologist his condition is just mild at the moment. Personally I'm not so sure.
I'm sorry I can't be of any more help to you. We all would so like to know what is "around the next corner" just to be of more help to our loved one.
Take care
Peter2.
Dear Lucille,
I think we all would like to have some idea of what is ahead but, as Kathy says everyone with psp is slightly different. Having said that, as a family we are relatively new to psp and reading the blogs from others has been helpful, but also depressing when we read about the potential difficulties for the future. Also reading the blogs leads me to believe there are a great many similarities between sufferers. Certainly my husband has had some dramatic falls, he has difficulties with his speech and occasionally swallowing, his walking is slow (he use to be very atheletic) and his thinking can be very erratic at times, this is from a man who use to be so logical in all his dealings in life. We have been told by the neurologist his condition is just mild at the moment. Personally I'm not so sure.
I'm sorry I can't be of any more help to you. We all would so like to know what is "around the next corner" just to be of more help to our loved one.
Take care
Peter2.
hi lucille
i am finding it hard not knwoing how quickly i will go downhill- since diagnosis last december -but i ams still on my feet adn gettign out even on my own and do not think that any one persons symptoms are like anothers
i giv e myself a little pat on the back each day i wake up and get up(not sleepign well at present and the cat comes in for an early breakfast most mornings!)
i am going 2 ask the consultant next week if he thinks i am ok 4 a couple of years-a commitment is difficult but my balance is a littlel better , my speech getting worse; my motorskills getting worse;my eyes getting worse but then i am sitll here typin g( v dyuslexically as my rt hand is stronger than my left )
and blogging for england
love jill xx
I have only received a tentative diagnosis also last Dec. ( from ayo but all indications are it is coming. My r t hand is also stronger than my left. I am noticing that a lot. My gait is very erratic, especially around home but haven't had any BAAD falls for a week or two. Just had a very humbling experience when I tried to sew a miserably simple straight seam. And I used to be a quilter! Thanks for the message. Lucille
Hi Lucille
So little seems to be known about this disease that we all have to feel our own way. It seems to affect everyone differently. Somehow when my husband was near the end he seemed to be more serene. At a certain point he thanked me for all I had done for him and told me to make a new life for myself. I didn't realize till after he had gone that this was his way of saying goodbye. I found that no two days were the same when he was ill. His falling over on a daily basis got worse but this seemed to also depend a lot on his state of mind that day. I tried to take him out and about with his walker as much as possible to distract him. It was also a way of keeping him as fit as possible. We can only do our best.
Love
Lina xx
I am sure you did your best ! Now it is time to take care of you! I have seen two husbands thro cancers so I know whereof I speak. Lucille
Hi Lucille
dealing with PSP is always a challenge. The PSP Assoc are an enormous help- they provide all sorts of info, a nurse at the end of a phone, some local support groups and training sessions for health care professionals. I don't know what we'd have done without them over the last 4 years.
Early on, I didn't read the forum much because I found it too depressing. Eventually I came to realise what a great source of support and information it was; and this new site is even better. Everyone here is learning something new about PSP, even if the loved one has died. Everyone here has something to share. Everyone here wants to help everyone else, even if only by sending positive vibes and virtual hugs 
Gather what information you can, remember that your loved one still loves you and wants to help even if the behaviour is unusual/ incomprehensible, and get support in real life as well as on here.
All good wishes
Fiona
I second what Suzie Q says in the next blog! Thanks everyone.
Hi everyone
What positive postings from everyone. It is so good knowing that you are all out there to help when we need it.
Take care everyone.............Love SuzieQ xxxx
One of the difficulties with dealing with PSP/CBD is not knowing what is around the corner. As we have heard on the forum, no 2 people will develop the same set of symptoms or have the same speed of progression. It really is a case of taking each day as it comes; on a good day try to do more and get out and about if you can; on a bad day allow yourself to rest and don't overtire yourself.
We are all here to help and the nurses are happy to answer your questions or concerns, or just allow you to offload if you are having a bad day.
Samantha PSP Nurse.
Thank you to all who responded to my question. It was all helpful. Lucille
Hi Lucille, Another good web page is pspinformation.com. We printed off the stages to keep with us and also give caregivers and family members so they would understand the progressive nature and the limitations our Mom would have. Acceptance was huge for all of us, Mom included. What can she do vs. what can't she do. It helped all of us to plan ahead and understand that when whe didn't make sense, or had falls (she used humor to say the ground came up to meet me again!) it was not intentional and just part of it. Everyone is different, and I don't want to preach, but her acceptance made it much better for all of us in handling the illness in a proactive way. Good luck to you...it is a tough road, but a road that can still be traveled with grace and dignity.
Kathy
Lucille, These two links helped me a HUGE amount. The first one gives the stages of PSP (what happens when) but of course it is a bit dependant on the patient. The second give the best overview of PSP I have ever read, bar none. Hope these help, they did for me.
pspinformation.com/disease/...
pspinformation.com/disease/...
Jim P
Don't remember who gave me these links on this site originally but they get the credit, not me. Jim P
does anyone know the answer
Don't know what to do
DON'T KNOW WHAT IS GOING ON
Does anyone know----?
Don't know what to do?
