Ruth Dawes

The above is my wife, my name is Brian, Ruth`s husband. She has just been diagnosed with PSP The effect is that she has lost of her voice, which has gradually happened over the last twelve months, until now all she can manage to say is yes and no very weakly. The neurologist told us that in time she will not be able to  even make the slightest noise at all, and that other parts of her body will be affect in time but could not say at what pace this will take. Reading some of the community letters it seems that a lot of pain is involved as the condition progresses. As you can see we are very new to this and know very little about PSP.

[LynnO]

Hi Brian,

My husband has PSP, officially diagnosed about 3 years ago. we think he's had it for about 5 years.  It seems that everyone progresses with symptoms differently and at different rates. The volume of my husbands voice changes throughout the day. Sometimes he struggles to get words right and other times he does pretty good. His biggest problem, besides his balance and eyes, are his cognitive abilities, which also is comes and goes. Some people say they have no pain while others do. My husband has a lot of hand and sometimes leg pain.  This disease effects people so differently and at different rates, it hard to put a time table on the symptoms.  The best thing I can say is read all you can about PSP and read often on here. I feel that people here know more about this disease than most drs.  Not everything works for everyone, but it will certainly give you ideas on what to do and what to expect.  And don't forget to take care of yourself too!

LynnO

[Hidden in reply to LynnO]

Thanks LynnO for your reply. Ruth has had many tests with many different doctors over the past year, and a neurologist at our local hospital, whom she has seen twice, at the second visit he said he did not know the cause and could not give us an answer to her condition, so before coming away I asked if there would be any point in getting a second opinion, he then made an appointment with Dr. Harley in Hull, after a very extensive examination he diagnosed PSP

[jillannf6]

hi brian welcome  to  the  site

i have PSP   dxd   5 ryes   ago dand ams still here   in    w wheelchair now a s  i  was falling so ,much inside.

My swallowing is still good  altho my voice  has got v  much quieter over last  18 months 

i have probs with my eyes which do not focus  v well  at al  a lll and  i cannot  look down orr up v easily 

i ha ve  some bowel &badder p robs  2 b ut  on the whole iicould  be  a lot worse

ol jill

[jillannf6 in reply to jillannf6]

plz excuse the typing

;lol Jill

xxxs  ps are u l ii in thhehull area=i go  to liverpool to see  a neuro there 

[Hidden in reply to jillannf6]

We live in Grimsby, but Dr Harley in Hull seems to know quite a lot about PSP as it was him that diagnosed the symptoms where many others did not. But thank you for your reply and suggestion.

All the best

Brian

[AmandaF in reply to jillannf6]

Jill, you are a legend!  Amanda.

[NannaB in reply to jillannf6]

You are doing brilliantly Jill.  Do you still manage to go to the choir?

X

[Hidden in reply to jillannf6]

Hi Jill.  Thank you for your reply, you sound very up beat considering  , I hope we can be as brave as you over time.

Brian.

[NannaB]

Welcome Brian.  I say ditto to all LynnO has said except my husband doesn't appear to be in pain.  He was diagnosed in Sept 2010 and he was showing symptoms 2 years before that. He is now as your neurologist told you what to expect in the future. We still manage good days out though, it just means I have to do everything to get us out.   

We have both just returned from a friends house and by taking our ramp, was able to get the wheelchair into the conservatory.  Although he can't communicate at all, C's eyes sparkled when the dog licked him and on our return, when I asked him if he enjoyed our day out, his thumb went up. So don't worry about the future, enjoy today.

X

[Hidden in reply to NannaB]

Thanks NannaB, it sounds like we are in her early days, but I will do my best to make every day the best that I can for her.

Brian

[abirke]

I say ditto to all that has been said.  Curepsp.org  is a wonderful site to find out the more common things one can expect from PSP.  My husband, diagnosed in 2013, has not experienced any pain in fact may have a diminished sense of pain which dissallows him from feeling injuries as fully the general population. But everything else from balance to vision B is losing....You are not alone Brian. And as Jillann has shown, your wife is not alone either.  if she can , I encourage you to encourage your wife to start a conversation with Jillann and others .  And I am sorry to have to welcome you,  to this site.  But welcome I do with these few words.  You are your wife's greatest advocate ... You are the  one who will keep her comfortable and safe; don't be afraid to voice your concerns or your ideas to her medical team.  But as you take care of your wife, don't forget to take care of you. Ask for help when you need it, not only from friends and neighbors, but if you're a praying man , to  God.  We are all hear for you.  Good luck

AVB

God is our refuge and strength, a very present help in trouble.

                                                                Psalm46:1

For  God has not  given us a spirit of fear; but of power, and of love, and of a sound mind.

                                                                 IITimothy1:7

[Hidden in reply to abirke]

Thank you Abirke for your reply, all the replies are a comfort, as it helps to feel that I am not so  alone .

Brian.

[Jotro in reply to abirke]

I have been noticing that many victims of PSP live pretty well for many years. I was in a deep depression when I found out that I had it last year after three years of slowly progressing symptoms. In fact, I had a nervous breakdown in February because of fear generated by reading all the posts here. But the physical therapy has brought of the apathy and I live for today. Enough of fear. 

[NannaB in reply to Jotro]

Hi Jotro, it must be pretty scary reading the posts from those of us caring for, and those who have PSP.  I am caring but I thought OH No when I started reading here,  but as you said yourself, we live for today. There is no point in worrying about the future as there is nothing we can do to change it.  There is, however, a lot we can do today.  If you can do it, do it now.

Best wishes.

X

[Doglinton]

It seems to me there is no pattern or certainty about the symptoms to expect.

I cope by thinking " make the best of now ". Then a crisis means a big deterioration , which then improves but not quite back where you were.

My husband was diagnosed  Nov 2013. Had symptoms and investigations for about 5 years.

His voice varies. Sometimes he sort of freezes and can say nothing, other times he can talk but struggles cognitively.

He can walk with a walker but tires.Falls. Bowel and bladder problems. Eyes sore and cannot look down. 

But we manage.

He has had some pain in his foot and headaches but not much.

Make the most of now and do things now. Don't try to guess what next. It will only surprise you.

There is lots of support here.

Love, Jean x

[Hidden in reply to Doglinton]

Thanks Jean for your reply, I suppose we are lucky in a way, as Ruth is no where as bad as your husband yet. It seems that we are just at the start of this illness. Thank you for your advice, we will try our best, but as I say it is early days and quite distressing at the minute.

all the best.

Brian

[Doglinton in reply to Hidden]

It is frightening and we are all frightened. But we learn how to manage.  We have to.  We all despair. Its normal to feel overwhelmed and angry.

love, Jean x

[sammy90210]

Hi Brian

It varies for every patient but some of the symptoms in order of progression can be:

- Loss of short term memory and reading/writing skills

- Loss of mobility - dizziness and falling

- Loss of speech

- Loss of swallowing skills - some people put in a tube in the tummy called a PEG tube - it's the patient and next-of-kin decision - not a benign decision at all, needs to be considered in depth and I would suggest discussing with your wife and your doc

- Dry eyes 

- Loss of bladder and bowel control

Pretty much everything goes away in time

Patients die in either their sleep (rare) or through chest pneumonia via aspiration (food/water going down the lungs and patients too weak to cough up, this can happen while eating/drinking normally or via PEG tube too) or bowel cancer or (maybe) worst of all, infected bed sores

Based on my own experience with my dad, the thing to do is to prepare as much as possible - it will be hard as hell but you should read up and talk to caregivers and patients here and in person, if possible - end of stage PSP is similar to end of stage for other dementias - I realized around now that your neurologist and you/your wife need to have the same view on whether quality-of-life or longevity-of-life is important - and at what point would the patient want to stop treatment 

Forgive me if you don't like my saying this but the disease may either make a very firm believer or a confirmed atheist out of you

[Tokki]

Hello Brian, I am sorry you have had to join us.

My wife was diagnosed a few months ago and the best advice I can give is to contact the PSPA for one of their guides and also get hold of the one for medical professionals and give it to your GP Has a referral been made to the Community Neuro Rehab team for physio etc? Also Speech Therapy may be useful for both speech but more importantly, swallowing. My wife has also been referred to the palliative care team at our local hospice and they have been a great help. The PSPA will be able to send you a regular magazine and also find if you are able to access one of their local support groups.

Best wishes.

[Hidden in reply to Tokki]

Thanks Tokki for all your advice. Ruth does not seem to be as bad as your wife as yet, as she has lost her voice and has a rigid neck  causing  her head to bend forward. As for the speech therapy she has been having some every day for the last six months with no effect, I asked the neurologist about speech therapy and he said it would not benefit her as she can`t  control her tongue or form her lips to produce the words. Wishing you well.

Brian

[steph02]

Hello Brian, I was diagnosed with  psp  in 2013 after  5years  of parkinsonisms apart from me falling over a little more often  than before I  am generally   quite  well and still  independent ie  I wash and  dress myself each day and cook and make  tea  coffee ect. basically  i think that i am still  in  denial  of  this disease  although i know that  there is something wrong.  I cannot   seem  to talk  sometimes and I may have difficulty eating  (  it drives my wife mad) because  I am  so noisy I don't get  out  much anymore  because they  took  away my  driving license and the bicycle  riding  is  getting  less   I can only go  about  5 miles  before  I get exhausted' still  basically  what  I am saying  is this doesn't have to  be  a  death sentence and you  can s till  live   a full  life .

[Hidden in reply to steph02]

thank you Steph, maybe things will not be so bleak as we have been thinking, hopefully the progress will be slow as my wife is 84.

Brian

[Jotro in reply to steph02]

Good for you. I vacillate between denial and acceptance like you. The gym is my best therapy along with my family. I can now do a leg press of 410 pounds twenty times and it gives me a feeling of power. But not being able to drive or bicycle is the pits. Ditto for long walks. But, as my son says "Adapt and overcome." He was a U. S. Marine when he was younger and keeps overcoming obstacles all the time and is my hero. Sounds odd but he is.

John

[AmandaF]

Hallo, Brian,

I am sorry to read about your wife.

My mother had PSP and the thing I dreaded most of all was that she would be in pain without being able to tell me about it.

As it turned out, my mother was able to speak and communicate until the end.  And she experienced no pain, other than occasional headaches that we could medicate.  So it is NOT inevitable that PSP sufferers all experience pain. 

Everyone's symptoms and progression are different.  I know it is utterly ridiculous to tell you not to worry about what's ahead further down the road, but if I could give you one piece of advice it would be to try to "live in the moment".  Grab whatever fun, pleasure and comfort you can from every moment that you have with your wife today and try not to let anxiety get in the way.  Don't try to measure your wife's progression against other people's because there is such a huge variation, you may be worrying about something that never arises.  Easier said than done, of course.

Do you have a local hospice?  They help people in the community who have life-limiting illneses and will be able to advise you both about the end stages and how pain can be mitigated.  You can usually contact them directly without a GP referral, for help in the community.   

Thinking of you and Ruth.

Amanda/x.