My Brother can't talk much

[goldfishtrad]

My brother has just been diagnosed with PSP after 2 years of messing about with the NHS. Not that that makes much difference as I think we had worked it out for ourselves when he wasn't responding to the parkinsons meds and there doesn't seem to be much treatment available anyway.

He is a year younger than me and i don't know what he ha done to deserve this terrible illness. I think he has had it for 3 years now. I speak to him a couple of times a week on the phone ( i live 200 miles away) and see him every couple of weeks. Conversation is so hard now, i get a one word response to every question and do all the talking. assume that is normal for the condition but it's so different from 5 years ago when I couldn't get a work in forall his chattering. So depressed by all this....

[Christine47]

Seems like speech therapy is called for. Perhaps you can locate someone who knows LSVT LOUD. "LSVT LOUD improves vocal loudness by stimulating the muscles of the voice box (larynx) and speech mechanism through a systematic hierarchy of exercises. Focused on a single goal “speak LOUD!” – the treatment improves respiratory, laryngeal and articulatory function to maximize speech intelligibility."

[doglington]

I'm so sorry as what you say is very familiar. None of us deserve this. You are right. Speech problems are part of it. My husband, always a big talker, now can barely say yes or no and often just doesn't talk. Apathy is also common.

I know your support will mean a lot to your brother but he may not show it. He is lucky to have you caring about him and you are clearly a loving , concerned sister. I wish I could say something to make it better but I can't. However, that doesn't mean that there won't be more good memories. Make the best of now and cry when needed.

Love and support from Jean xx

[Hidden in reply to doglington]

Hi there...we are going thru all this with my dad too. It is so frustrating dealing with something so rare. He seems to have had it for quite a few years now but was originally diagnosed with basal ganglia disorder. He was re diagnosed about a year and a half ago with PSP. This time has been characterized by lots of bad falls, unclear speech, incontinance and not being able to walk on his own. He fell badly and broke his back 9 months ago too. His breathing is difficult at times and he chokes easily. He has had 3 visits to hospital in the last 9 months and quite honestly he is better off at home. He is coming out of hospital today and will be having full time nursing at home. He is restless and aggressive in hospital and seems to deteriorate even more. No place like home for him now it seems. All we can do now is give him the love and support he needs.

God bless u too and u struggle thru this tough time. X

[Tippyleaf]

Speech is increasingly a challenge for many with PSP. We try to face time/ Skype rather than. Just telephone, my husband likes to see the other person and they get more clues from his face and hands what he is saying. I chip in if the other person has clearly lost the thread.

Speech therapy has helped hugely and my hubby tries to read out loud for a few mins each day to ' exercise' voice muscles.

Emailed photos are a lovely way to keep in touch from a distance our children send them to help keep their dad updated.

None of the above make up for the loss of regular conversation but help a little either the feeling of isolation.

Xxxxx

[EricaE]

I'm so sorry.

My brother was recently diagnosed with PSP. He lives alone and, although my sister lives close by, I live 130 miles away and so our daily phone calls are really important to us. I'm familiar, albeit still only occasionally, with what you describe - one word answers to questions, silences as he processes what I've just said, having to do all the talking to keep the conversation going and bouts of apathy (it seems, as Jean/doglington said in her reply, apathy is another common symptom).

I too have felt very depressed by it all and overwhelmed by sadness since my brother's diagnosis and the realisation that there is nothing to be done and that his symptoms will only worsen with time.

So all I can do is love him and (although I can't be with him all the time, something I'm struggling with at the moment as I'm so anxious about him when I'm not with him) together with my sister and our husbands support him as best we can and ensure he is given the appropriate help to manage the symptoms as and when they come.

Life as we knew it has changed and will continue to change and I fear this journey of losing and loss. But taking it one day at a time - sometimes one hour at a time - seems to help me. And alongside "raging against the dying of the light" creating a stream of new and happy experiences for us - as easterncedar said to me, "to the extent life can be enjoyed, I think it should be." .

Everyone's situation and pain is unique to them - be they living with PSP or caring for someone with PSP - but I hope, like me when I joined this community, knowing that here you are amongst people who will listen, share experiences, advise and guide and most important of all understand will be of some comfort to you.

My heart goes out to you and to your brother, to my brother, to all of us.

Gosh it's tough. xx