It is unbelieveable how very kind and compassionate the responders on this site are. Anyone asks a question it is never left unanswered. I think you all are dedicated to this site and keeping it running for those of us who need it. Thank you for that. My husband died of PSP in July and while I am ashamed to say I did not contribute, I did read the comments every day and they were so helpful to me. Hopefully one of these days I will be able to contribute but until then i pray for you all and still read. Thank you your comments are an enormous help.

27 Replies

  • Dear kylie

    I'm very sorry to hear about your husband, how have you been managing since July? I hope you have family and plenty of other help and love and support around you!

    And thank you for your very kind words! We all support each other through good times and bad! I for one, wouldn't have coped without my dear friends here and equally I've learnt so much! Invaluable

    Hugest hugs x

  • I'm so sorry about your husband and hope you have managed to find a new life after PSP.

    I have found this site a Godsend. I'm not sure if I am dedicated or addicted but I don't know what Inwould have done without it.

    I pray you are coming to terms with your loss and once again have fun in your life.

    Take care.


  • I'm addicted nannab x

  • 😆


  • Ditto.

  • I think addicted is the right word. Just know I needed something and this filled the spot. To be able to talk to people who understood exactly what I was going through and could offer practical advice has been invaluable. The fact is now, I really feel that this is an extension of my family and I have to know how everyone is, so check in regularly, to make sure all is well.

    Kylie, I am really sorry for the death of your husband, but he is free from this evil disease. Please feel free to rant and rave if you you need to, we are here for you.

    Wishing my lovely family a Happy Thursday!

    Lots of love


  • Hi Heady, I feel the same and click on my iPad as I walk passed it. I also multi task. At the moment I'm eating a late breakfast at the same time. I never check posts using my phone though so if I'm out of the house I'm not in touch and always leave my iPad downstairs at night or I'd probably be talking to our friends overseas instead of sleeping. Breakfast finished so will now get the room ready for my brother and sis in law who arrive on Saturday for 5 days...hooray! Cups of tea and meals made for me.


  • Yes I just helped B with breakfast and hygeine am finally sitting down...and this is the first place I sit!...addicted ...I can stop anytime....no I cant...I am addicted...I need you ...I really need you....

    :) :) :) :) hahahah


    PS I really do need ya'll

  • Need you too!!!!!

    Lots of love


  • i agree anne

    oi am addicted i think!|

    lol jill


  • HaHa! Reminded me of our grandson, "Nanna B, I need ice cream, I really do need ice cream".

    I need you all as well, lots and lots.


  • i agree with u all]

    ;loll jilll


  • Yes I think I am addicted. Its my lifebelt at times.

    Sorry about your husband. I imagine it is really difficult to pick up life again after it completely revolving around PSP.

    Good luck, love, Jean x

  • Sorry to hear about your husband, sending you a hug. I think I am also addicted as well, don't know either what I would of done without you all, I look all the time to see who has posted and feel disappointed if there are no posts. Yvonne xxxx

  • Amen sister...anytime....and sorry for your loss, How are you doing?


  • Right this second ok. I feel his love around me. As jkrowling said love is in your skin. He is gone so I have to go to plan b........forever. But I think he has just gone ahead.......to check things out for me!!! Thank you for your concern!

  • K, I always say,"Not gone, just gone on ahead"! You could help us all by letting us know what to expect in the "end times". If this is too painful or private for you I apologize profusely. We are just getting very close I fear, and I would like to know what to expect. I understand it is often unique to each, but anything would be good t oknow.

    And I am sorry for your loss and hope you have been able to come to terms with your life now, and grieve on your own terms.

    Thanks for posting,


  • I will try to respond here tho I may have to cut off and then come back. I wish someone had given me a heads up on what to expect but you get complacent if that is the right word just trying to do the right things and the routine things.

    I guess ineould say don't let any day become routine.

    Bill had a heart attack in 2009. He had a stent put in and was fine tho 300 # He was diagnosed in 2011. First with Parkinson's as his walking was lumbering with his hands at his sides. We were given books to read about PD and come back in 3 months!

    We came back neurologist looked at Bill's eyes. His pupils were fixed and said immediately that he had PSP and sent us to the movement disorder clinic at Rush institute of rehabilitation in downtown Chicago. His neurologist there saw him about every 3-6 months until he died in July of this year. He also saw a neurological ophthalmologist.

    His balance was the big problem at first. Then his eyes. Rush has a drivers evaluation department right there and the doctors are required by law to make sure their patients are able to safely drive. Bill was fine until they got to his side vision. We had known there was a difficulty. We were not letting him drive the grandkids or anyone else. I drove when we were together. He had An accident on an off ramp going to a casino so we knew. It was heartbreaking for him As he thought he was fine

    He started falling then, kept hitting his head. On the drive way, down the stairs (22 staples in his head) . Knocking out walls. Early on he broke some ribs refused to go tongue dr as there really wasn't anything to do but he cracked them good and they healed terribly tho he never complained. He never complained thru his whole illness never broke anything else either no concussions even tho he was knocking out walls with his head! He began using a roll atop walker. About this time 2013 I broke my tibia ! We finally got a stair lift and a 24/7 caregiver. I had promised Bill he would stay In his home. We then moved out of our 2 story home of 28 years to a nearby town home. We made the master bath completely accessible with rollin shower grab bars etc bedrooms and baths on the first floor. I had surgery on my leg in July 2014. Bills balance was getting worse and he started having a bit of trouble swallowing and then talking.

    The last year of his life this horrible disease progressed very quickly so much so that it took us by surprise. He was coughing a lot we were cutting his food into small pieces. He was also having muscle problems in his hands and arms . It was hard for him to feed himself .what he could do took a long time . We went to soft foods mashed potatoes and meatloaf , soft muffins , orange water instead of his favorite diet root beer. There was a lot of coughing and choking He had had home health occupational and physical therapists as well as speech. He was on the usual meds for PSP carpadopa levodopa And others for blood pressure and his heart ..he just kept going on caregiver helping him now becUse his balance was bad and we had a lift chair. He kept getting weaker and I just thought it was the disease. It was but when you are with them every day you do not not notice the advancing progression or think the coughing and choking is so bad.

    In early December 2015 Bill got a uti He had been having kidney problems and had several kidney procedures. After the third one he was a bit incontinent and we went to depends tho he mostly made it to the toilet . But he ran a fever one evening to 104 and we went to the er

    He was admitted and his coughing and choking became respitory distress which he probably had hD at home for a while He was taken toINTENSIVE CARE and they decided because of his swallowing that he could not eat or drink anything by mouth Bill decided on a feeding tube he was in the hospital for 6 weeks we went home on January 6, 2016 full battery of home health aides and a hospital bed and wheelchair he had had quite a bit of therapy in the hospital it continued at home he was able to transfer from chair to wheelchair therapy on walker however he was getting weaker still coughing even with the feeding tube

    In March he was back in hospital for 5 days for another uti

    He was still using the toilet but often incontinent esp at night

    By the time he went into the hospital the first time his speech was being affected Gradually it became very difficult for him to talk at all . He had been unable to write clearly for a year or so so communication was very difficult

    He could do thUmbs up or down to communicate yes or no that was about all .It was heartbreaking because he could not tell me what he was feeling he had difficulty working the tv remote he could not read as his eyes were so bad His breathing was becoming just a bit labored

    In June we celebrated our 50th wedding anniversary we had our kids and grandkids come over and our priest who said a mass for us in our home after that he just kept getting weaker I did not realize how weak I should have spent more time with him just talking and making conversation yes he wAs sleeping a lot he had been for weeks I think his oxygen was getting lower but I should have told him more how much I loved him we should have talked more

    Home health was still coming and now palliative nursing his hands were swelling I had to squeeze his wedding ring off so it would not have to be cut off

    He was getting weaker and weaker and not having enough strength to help the caregiver to transfer from chair to wheelchair remember with my broken tibia and weak leg I could not help him

    On Thursday July 7 his oxygen level was 71 when I got him up it had been in the 80s the day before but I knew this was low so I was watching it had a pulse oximetry monitor after the caregiver washed him and dressed him in the bathroom and we got ready to move him to the wheelchair he just crumpled to the floor we got him up and into the wheelchair and into the living room again as I do not think he was responsive then I just did niOt realize it I was talking to him but he was not responding I hooked up the feeding tube then took his pulse ox and it was 46

    I called 911 and talked to him while waiting for them to come t old him it was alright for him to take the arm of the lord and go with him that we would all be fine me the kids and grandkids since he had worked so hard to make sure we would all be ok paramedics came they gave him oxygen in the ambulance and the hospital has a hospice floor where we agreed was where he should go he was still not responsive in the er I told him again to just go with the Lord

    Our girls came and told him it was ok all day Thursday

    I thought I would be bringing him home from the hospital to hospice at our home but he waited for me to wake up at 6am Friday morning and quietly died he never responded after his 02 level had fallen at home but I know he could hear us and he

    Finally knew he had done all he could for all of us and that we would be ok and he went with the Lord

    I can't do any more now ask questions if you need to

    God bless all of you you are In my prayers

  • Sorry for the loss of your husband and I hope you are getting stronger each day. This is a wonderful site with great advice/info from everyone, and yes I am addicted too and feel like it is my extended family. Look forward to hearing from you when you are ready. Much love, Nanny857 x

  • Thank you

  • I hope your are starting to move on and re-build your life, PSP has taken its toll for too long. Grieving is a great healer but it takes time.

    Best wishes for a kinder time. Tim

  • Thanks

  • This keeps me centered knowing I have friends that "understand" what this is. The whole picture, not just a bit of it.

    So grateful. You will always be one of us and I wish you peace.


  • Thank you so much

  • I could of not said better the Nana B and Heady. I look forward to my morning Email from You all.

    (((Hugs))) to all and Thank you

    Deidre in BC

  • ......and that also goes for me - as I too, am addicted!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! and I am soooo proud of myself for saying that x x x xx x x x xxx x xx x xx x xxxx xxx x x x x x x

  • Kylie, I am sorry about the loss of your husband....I am glad you found and continue to find solace here.....No matter what stage we are in Newbies, making the ever so difficult decision to put loved one in a nursing facility or like you , saying good bye . We are here as a family going through it with each other...If and when you have words to say.....go ahead say the,;scream them; jump up and down...but also look to your future....you need to be ok moving on and holding on to the wonderful memories while you continue to make more...Remember we will always be hear for you ...



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