Is this site the right one for me?

I was diagnosed PSP Dec 2012 but I am not sure this is the right place for me/ I wanted somewhere that PSP people apart from family could exchange messages. People here seem to be spouses or daughters/ sons. I dont have sons/daughters only spouse who is 84 years old & to have surgery himself on June 26 for herniea bilateral. I'll watch how this site goes for me.

24 Replies

oldestnewest
  • I am sure you will find good advice and friendly comments from families of other PSP sufferers, there are several nurses who will always "talk" to you along with other members I DO so hope that you are getting some practical help for yourself and your husband. I am sure you will hear from one brave lady jillannf6 who has been diagnosed.

    x

  • thanks kay i have a neuro nures but she is reluctant to do anything that is doctors work like recommend meds for anxiety. I also have a good GP but I dont think she knows much about PSP she ordered 2x antibiotic recently for chest infection but I got thrush + constipation after. A nurse friend told me I maust always take probiotic when on antibiotics to avoid thrush. Cheers Mary

  • hi

    it is the irght site fo ryou

    i have PSP diag 2010 and ma still here!

    LOL jill

    :-)

  • u did not say why its the right wite for u jill? please tell me?

  • HI I HAV E PSP DIAGNOSED 2010 AND THINK THIS SITE IS TH E BES T WITH EVERYONE SO SUPPORTIVE WHETHER THEY R PATiENTS or CARERS

    I HAVE BEEN ON THE SITE FOR 12 MONTHS NOW AND HAVE MADE LOTS OF ONLIEN FRIENDS-AND ASTHE NEARES TGROUP FRO PSP ONLHY MEETS EVEry 3 MONTHS IT IS GOOD TO KEEP IN TOUCH

    LOL jill

  • Thanks jill Idont have a group at all that meets anywhere this was my main reason for joining here so far many people have blogged to me which I appreciate very much

  • Check out cure PSP . There are other web sites . They are all good.

  • I have previously been to cure PSP but did not get any useful inof & they have stopped ?something cant remember

  • we're about to have a massive storm here in Perth WA so am going to bed along with 2 dogs!

  • the australians r prettu good at website u tube ane info on the net

    lol jiLL

    :-)

  • Hi Mary - I am so sorry to hear that you have been diagnosed with PSP. I hope you stay with this site or the europe site- it is by far the most positive place I have found for advice and support. Most of us carers blog in the place of our PSP loved one because of the loss of dexterity so please don't let the deter you from blogging or asking questions or having your husband do that for you as well. The curepsp.org site is still alive and well in the States -there are some good webinars to take a look at.

    Dani

  • Thanks Dani I'll have a look at curepsp USA

  • Hi Mary,

    I hope you do stick with this site. It is a good place to share thoughts, feelings and news as well as getting some good advice and learning from the experience of others.

    All the best

    h

  • hmfsli thanks for yoour thought I guess I am still trying to come to terms with PSP although my community neuro nurse tells me I am atypical.

  • Whatecer "atypical " means

    We r all unique in that the brain is affected by many things

    I know thatif i am stressed it is all much worse

    Lol,Jill

    :-)

  • yes if I am stressed its much worse. I want to try to find some medication for anxiety which really causes me problems but havent seen any info on it.?I go to my GP next Wedn & will see what she says.

  • hi mary

    there r lots of meds for anxiety

    it is a problem i hav e had for years

    and it does not get any easier

    u will b ok on your own - i lived on,my own untii a few weeks ago when i move dinto a gorund floor apart with myl partner

    it is a mixed blesssing!~

    but i have a good carer hwo comes in each day to help me

    lol jill

    :-)

  • thanks so much Jill I'll be trying hard to cope alonw for at least a few days. I have let people know so maybe someone will call to check on me i note your little 'face' but cant seem to find any emocons Mary

  • HI MARY

    plz be sure that the site will support u adn all thes eonline friends will eb threre fo ru

    lol JIL;

    you do a smiley face by

    shift colon then dash then shift bracket lef thand

    ie shift:

    -

    then shift key and )

    :-)

  • Thanks to all commentors! I will write more later going to gym this am. Husband to have hernia surgery June 26 - am anxious about that as will be by myself for few days. marytea13

  • Hi all my husband is home after bilateral hernia surgery & is amazingly well he's very fit for his age goes to his gym regularily but will not be able to do that for a few weeks. I managed ok but then I think I have the slow version of PSP. I went to my physio yesterday but he's decided to go travelling (USA &Europe) he's only young & should see the world while he can do that his replacment physio is very keen & did a video of me walking - interesting not equal on both sides! I didnot tell pp on this list that I live in Western Australia in the capital city of Perth where its cold & raining at this time of year. but still mostly plesant days. marytea13

  • Hi There.

    The PSP Association in Australia are a good source of information and support. The web address is psp-australia.org.au/

    Hope this is useful to you.

    You can also download a range of information at pspeur.org

    Best wishes

  • Thanks Cameron the Australian site does indeed have good info but there is no blog as there is on ths site that I find I am now enjoying. I'll have a lookt at the other site too thanksfor your input.

  • This is the right place for you. None of us care if you have trouble typing. Just keep talking. You help us understand and we hope to help you understand.

    J.

You may also like...