It is with great sadness that my husband and best friend of 40 years has lost his battle to PSP.
Following the usual misdiagnosis pattern over the past 4 years he received a PSP diagnosis in October 2022. Since then it was difficult to watch the rapid decline of a man who before this had never been to the GP for any illness.
Taking on the fast track learning and research about PSP we did have to shout out initially for his care needs, but I feel grateful to live in an area where our voices were heard and all MDT services (most of who had never heard of PSP) were put in place as he required them and his very caring GP would always visit when asked.
In addition there was the amazing support from this forum and PSPA, especially the NE carers group who were always a great source of comfort in understanding that you were not alone on this journey.
I feel very proud that as a family his wishes were met and we cared for him entirely ourselves at home and he was never admitted to hospital. He passed away peacefully in January with myself and our daughters at his bedside💔
Please stay strong on your own journey x
As a footnote, and I know times are hard but if anyone would like to support the amazing work of the PSPA, my daughter Alice is running the London Marathon in April. This is the link to her fundraising page.
So so sorry to see this. Thinking of you all at this time. Your family are your support network, you will all get through this together, as youve been doing over the last 6 years. Your husband was cared for by all of you whilst he remained at home, and to be surrounded by you all when the time came, must be a great comfort to you all. Though this doesnt take the pain away from loosing your loved one, you can all take something from it. The memories,the things that you done as a family, the things that youll still continue to do also. By continuing to support PSPA in fund raising etc, it shows how much you care not only for your family but others going through this awful thing.We have not long started this god forsaken journey, it is one that is continually changing, there are good and bad days, but having a good care team that are knowledgable on PSP/CBD and a very strong support network, family and friends we deal with each day as it comes. Like so many before and so many to follow, we all hope that a breakthrough may soon be discovered and there maybe alittle light for us all. By continuing with fund raising, raising awareness and on going research lets pray that time will bring it sooner rather than later 🙏
Sending love and prayers to you and your family at this time
🙏🌷🙏
I have made a donation to your daughter, well done to her for this huge effort 🙏♥️
I'm so sorry to hear of your loss, my thoughts are with you as you navigate the next phase. Huge admiration for you and how you and your daughters surrounded him with love when he needed it most. I know how hard it can be. I wish you peace and comfort 🫂💜
I’m so sorry. Someone on this, or possibly another, PSP forum said to me after my husband died, “now he is whole again.” This gave me solace. Be kind to and Take care of yourself.
So sorry for your loss. I too lost my husband, Richard, from this cruel disease in June 23. My heart goes out to you and all those suffering and their carers. 💔
Sending love and prayers to you at this sad time. I hope that you will be able to take comfort from knowing that you did your very best and all the amazing care that you gave your husband.
Dear Lynn, I'm so sorry to hear that your dear husband has been taken from you. There is nothing that will fill the void he has left in your heart and your life, but he will be so proud and grateful for all that you did for him and the love you gave him through his fight against PSP.You have your lovely daughters by your side, may they be your consolation.
Lynn, My heart goes out to you as you navigate the time ahead. We lost our most prized love, our stepfather, in August after a nearly 3 long year rollercaoster of diagnosis from managable parkinsons to PSP. He had never exhibited any signs of illnesses prior to the falling, and always had his annual wellness check ups with his primary care provider. We were also able to care for him at home until his last breath. I would like to say, that his last breath was very very peaceful. As the months have passed (6 months on valentines day), the fog has began to lift. I spent most of those 6 months not being able to remember much of anything but the 3 awful years as he deterioted and we couldn't do anything to help him. That pain is so much to bear. Please continue to remind yourself that you were there for him and as you know, he is finally at peace. You will someday be filled with only the beautiful and wonderful memories that you had with him. The anger at this disease can be overwhelming. We, like you, did all of the research, desperately searching for a cure. I am currently working on a research paper in my stepfathers honor. (I am seeking a direct connection between gut microbiota and neurodegenerative disease.) My mother spends a lot of time at home, aching for the love of her life. But our hearts are healing with the blessings we received with him in our lives. The last night, I said to him, this is it buddy, you're going to be free to hike again. He was the best man I have ever met in my life. I miss him like a gaping hole in my heart. I pray for you and your family and I pray that someday the world can be free of this wretched disease. It is by far the worst thing I have ever witnessed in my life, and I've experienced plenty of past trauma for sure. My heart aches for you as I write this. I thank you for sharing and reminding me of how far my family has come in our healing journey. There is not a timeline for grief, be kind to yourself in the days, weeks, months and years ahead. All of your feelings are valid. Please continue to remind yourself that you did everything you could, most importantly you were there for your beautiful best friend and love of your life. I believe it was Einstein who said, energy doesn't die, it only changes its form. His soul is with you and he wishes he could save you as much as you wished you could have saved him. May you be blessed with peace and healing. Big hugs.
Thank you so much for your heartfelt reply, it really meant a lot. I have saved it for my daughters and they equally send their thanks. I think I’m still at the point thinking what else could we have done, said or supported him with, but I know in my heart of hearts we did everything and I’m hoping he knew that too.
How wonderful dedicating your research paper to your stepdad, I wish you the best of luck for its completion .
Best wishes and strength to you and your mum on your healing journey
So sorry for your loss,you did a sterling job of taking care of your best friend 🧡 My mum passed away in 2018 after 6 years of PSP &CBD diagnosed following Post Mortem as I donated her brain and spinal column for research
I didn't want her suffering to be in vain 😪
All the best to your daughter I'm sure she'll do brilliantly
Laura Louizos offers us these heartfelt words about grief
“Love Beyond Loss
Grief is love with nowhere to go, but through caring for my parents, I learned that love does indeed find new paths. It transforms, it teaches, and it remains. My story isn't unique in its sorrow, but perhaps in its perspective—the privilege of being there, of being the hand that holds and the heart that remembers.
In sharing this, I hope to reach out to those walking similar paths, to say you are not alone. The journey through loss is personal, yet universally understood. It's filled with pain, yes, but also with an immeasurable depth of love that continues to grow even in absence.
Here's to the love that outlives death, to the caregivers, and to the memories that keep our loved ones alive in our hearts.”
I would like to add that there is life after so many years of caring for a patient with a neurological disease. After death, there is a kind of emptiness, a feeling of not knowing how to continue being useful. We must resume old personal relationships, friends, neighbors, family members and find the path where life once again has meaning and purpose.
I am so sorry to hear about your husband. Sadly we all know how things are going to turn out with the path of this disease. But it is remarkable and a huge credit to you and the family that you managed to care for him at home till the last. That is my one wish for Ruth......
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Gone but in peace ...
Peace at Christmas.
Rest in peace Dad
Peace at last
My heart is heavy. My guy is resting in peace.
