I have been viewing this site for several years but recently my email address changed and as a result I have not been receiving emails from your organization. I have made the necessary changes to my account and now will be able to communicate and view your comments. As a support group facilitator I find many of your posts helpful and pass needed information on to our participants. My husband had PSP and I was his sole caregiver for several know your journey.


14 Replies

  • God bless you and welcome back ileen


  • Thank you. :)

  • Thank you.

  • Welcome Ileen. I presume your husband is no longer with you and have great admiration for those who continue to work for the good of others who have or are caring for those with PSP. I'm not sure if I'd want anything to do with PSP once my darling leaves me, other than keep in touch with all the lovely folk I've "met" here of course. Keep up the good work.


  • Thank you. Everyone is different. Being involved and reaching out to others helped me after my husband died. It gave me strength and helped me heal through others. Many choose not to stay involved and that is ok......certainly understandable.

  • Welcome back Ileen, funny how different people react to the loss of their loved one through PSP, don't know how I will feel as it takes everything away from you as a couple except that deep bond you have formed over the years. This disease makes me feel so sad inside as it it wraps its tentacles around your lives and tears it away bit by bit. It has to be up there as one of the real baddies.

    K x

  • Yes, you are become your spouses caregiver - not his wife. As I was feeling that divide during my care-giving days, I would wrap my arms around my husband and tell him how much I loved him. I took him to 5 weddings the year before he died and we danced together (in his wheelchair - called wheelchair dancing) and he danced with every bride with my assistance. The intimacy may dwindle but the love lives on. Don't let those tentacles smother you. Take a deep breath and yell at the top of your lungs "I will not let this disease control us - I will control IT!!!!"

  • Great you have you Ileen! I'm sure you will be falling in love with all of my friends in the US and across the pond. :-)


  • Thank you and where are your friends here in the US?


  • hi ileen]=welcome nack 2 the site

    zl jillxxxxx

  • I also have not being sent any e mails and have been having difficulty relogging back in

    May address has not changed ,

  • c c try your pasword

    ;lo;l jil


  • Sorry, don't understand.

  • t he reply was left 4 c c 2 see if changing he r pl.w uwud work

    ;lol jill]

    andwme ileen


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