SEADIVER

[SEADIVER]

Like many of you my wife was diagnosed with Parkinsons in 2019 which changed after twelve months of medication that did nothing to PSP. This devastating diagnosis was such a shock as we believed we would have many years left together. This is not to be. Prognosis is seven years and total heart breaking years. We first met when we were fifteen years old and fell in love. We are now seventy three and still in love. We did everything together and I don't know what I will do without her. I feel the pain already and I have only lost part of her. God help us

[Sun-flowerwearer]

I hear you and understand x. I have been married to my husband for 40 years and up until 2020 when covid restrictions kicked in he was sailing single handedly down the coast, sea kyacking and walking miles with his dogs. He is now chair bound/bed bound and needs help with everything. He cannot laugh or smile or talk. I am bereft too .. for us both. My heart breaks for him and for me as we are in this together until the end… whenever that may be. I understand your pain and your fears for the future when they leave us on our own xxx

[SEADIVER in reply to Sun-flowerwearer]

Many thanks for your reply. It's my first time conversing with people in the same boat and I didn't think it would help, but how wrong I was. It chokes me up reading your reply, but it's good to share and I now feel connected with a group who understand. Xxx

[Zerachiel in reply to SEADIVER]

Hello, there are many of us on that boat I'm afraid, we have been married 36 years, my wife is only 56 and in 3 years has become become chair bound, she is fed through a feeding tube, cannot talk, swallow or cough and struggles to open her eyes. This year alone she has been hospitalised twice with pneumonia and a few weeks ago fell breaking her collar bone and hip.This site is full of information to help you through this journey and people who have already travelled it.

[pmcdonough1]

Sending you my best. I was married to my husband for 30 years. He passed away August 2023. We were soulmates and I miss him dearly. Sometimes I would just sit and hold his hand. I would tell him all the sweet things I wanted him to know and he would squeeze my hand to let me know he felt the same. Sometimes he would speak in short sentences, usually answering questions I asked. I am taking life one day at a time for now. On a side note, the NIH has a paper which states that patients with PSP benefit from up to 20 mg of Donepezil. This helped my husband with cognition and swallowing. When he took the medication it was like a light turning on in his brain. Wishing you and your wife peace each day.

[LostinHeadSpace]

Oh, Seadiver, how we all relate to your shock and disbelief! It’s quite the process to wrap your mind around what’s happening, and what it means for the future! The people here will be more help than you know. You’re not alone.

Best, Lost

[Kasenda]

Dear Seadiver, there is life after the diagnosis. Make every day count. Show her your love and do those things you can still enjoy together. I lost my husband recently after 11 years of PSP. He knew that I did my very best for him. No regrets, just happy memories of the good times we had together. Thinking of you and praying for you. 🙏

[Troubleandstrife]

Your story breaks my heart all over again. Every new story of PSP breaks my heart because I know the experience in my heart and in my bones and I will never not know it. The love of my life was freed from his body in 2022, after a confusing, challenging, and "brutiful" PSP voyage. Have compassion for yourself and patience with your wife, and take as much help as you can. This is not the time to be a hero. It's the time to be husband, a lover and a friend.

[Granny29335]

I'm so sorry. We just married five years ago expecting the rest of our lives together. He is 65 and I'm 62. I think he's had it for about two years now. He was just diagnosed 6 months ago. We are still reeling from it. It's heartbreaking, isn't it? I wish I could fix it all. Hugs and prayers.

[Leosta]

You're heartbroken and already grieving. I understand this. My husband is now bed bound and has lost the ability to communicate. He's here with me but a part of him has disappeared.Let the love you have for each other carry you along this hard road. As Kasenda said, "there is life after the diagnosis ... make every day count"

My prayers for you both.

[Dickwin]

Seadiver, my wife and I have been together since we were 14 and 15. We married when we were 17 and 18. We have been dealing with this God forsaken disease for 11 years. My wife started out having gate freeze and falls that came out of nowhere. She was only 47 at that time. It took us five years to get a proper diagnosis. At that time, they told us we had 4 to 7 years. That was 6.5 years ago and while my wife is in an advanced PSP state, I believe we have several years before we reach end-stage. Yes, there are moments of anticipatory grief that are overwhelming. But you cannot dwell on them and you have to live one day at a time and stay in the now. Make sure you tell your spouse you love them every day, and keep your focus on today. And remember, the prognosis you receives is a best guess, not a sentence.

Good Luck and best wishes.

Dick

[LuisRodicioRodicio]

Dear friends,

Reading the different comments has moved me. It is beautiful to glimpse real deep love stories.

Perhaps "Kasenda" has summed up the general feeling. It is time to positively take advantage of every opportunity that is presented or scheduled to enjoy the good moments, the memories that were born in the warmth of love, the heartfelt and simple words of affection.

I think it is appropriate to remember that caregivers, especially the main caregiver, will have moments of weakness and that it is essential to be attentive.

I think this quote from Anne-Heady highlights the more “practical” facet that a caregiver should take into account: “Never forget to get enough rest, ask for help, and, above all, get rid of guilt!”

One of the caregiver syndromes is thinking that they could have done better, it is maybe true, but in that certain situation we did not have all the information that we have now: "Get rid of guilt". We are imperfect.

It's been 3 years since Maria physically left us... but she is still present every day, even talking. And life goes on and continues to be a gift that it offers us to enjoy.

A big hug to all.

Luis

[Golden63]

I am sorry to hear about your wife and I know how you feel. I too was first diagnosed with Parkinson's but 3 years later I was rediagnosed with PSP. I have the mindset of doing things while I can, dusting of my bucket list. My partner and I have just returned from Florida and yes I did the rides that were scary. We are booked on a cruise at the end of October to Venice and Naples plus other places in between ending in Rome..I am 63 years of age but I do get angry/upset about why I have this disease. My main upset is my grandchildren, how will they remember me..so next year I am going to arrange trips. They may not remember them but the pictures I hope will leave some legacy.

Take care xx