My son, Jeff, died almost a year ago on May 4, 2017.
May 4th, 2017, fell on a Thursday. Today is Thursday.
He died at home of PSP (Progressive Supranuclear Palsy). He died just barely attaining his 55th birthday.
His first visible symptoms appeared March 2014. The two first symptoms were DOUBLE VISION and slurred speech. The slurred speech quickly disappeared. The Double Vision never went away....even with cataract surgery and prism glasses. He had a big R&B concert (Art Laboe) on that weekend. He was the bass player in the house band. The following morning he had woken up with the double vision and the slurred speech.
My son was a very kind and compassionate person. He was highly educated (UCLA music major, LLD Boalt Hall, UC Berkeley, passed both the California Bar and the CPA, held a secondary credential in math). His day job as a secondary math teacher allowed him the comforts of purchasing his own home, and accommodated his night job as a musician.
A Renaissance son.
I miss my son terribly.
I read on this site of participants who are actually receiving the gene therapy of the Abb-Vie and Biogen clinical trials. I am grateful for their sharing. It's encouraging. I am looking forward to formal feedback from the pharmaceutical companies. My son died shortly before I heard of those clinical studies.
My son was originally DX with Parkinson's (PD)...nearly a full year after his first symptoms appeared (January, 2015) , and a full three years before he was given the DX of PSP (January, 2017).
I did not start following the PSP support group here on Health Unlocked until four months BEFORE his death. Prior, I had been reading all I could on PD, including the postings here on Health Unlocked. .
This site is so outstanding in the informational sharing that it offers. I believe my son was hindered by MY lack of guidance this site provides. I urge everyone to read ALL the postings. Often the sharing goes off course from the title, and valuable information for the caretaker may be lost.
The Pixar movie, COCO, reminds me so much of my son's quest and determination to achieve professional status as a musician. It has become a favorite of mine.
My daughter (Portland, Oregon) and my sister (Austin, Texas) will be arriving this afternoon to keep me company....spending the weekend sharing stories of the son, brother, nephew sorely missed.
This photo of my son was taken at a New Year's gig before Jeff was taken ill. Happier times.
Blessings, Margarita from Los Angeles, CA, USA
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enjoysalud
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Margarita I didn't discover this site until 4 months before my husband died just like you! I was just floundering about with no advice and little support. I wish I had found this site much earlier.
Your son was a handsome man and much too young to die. To die of PSP is awful for anyone. I am still learning even though he's gone, because we need to educate everyone we meet about this awful condition.
Much love and a big hug to you. Hope you have a nice weekend.
Prayers and hearfelt condolences for you and your family! I think that when I am in your shoes I too will feel like I didn't do or know enough. I feel like that now every single minute. I also feel guilty and I think it's because I feel like it must be something "simple"...like the food he ate or the environment he worked in or a habit he had that seemed harmless, and how could I have not known? It's irrational I guess, but a feeling just the same. It's already eating me up and he is still here. I agree with your comments about this site being so helpful and also about reading all the posts. It is a full time job doing that and it's always late at nite when I am able to do so with focus. After a while I am very overwhelmed!
I am glad you have family coming in town to be with you this weekend. Give yourself some care. You did an amazing job. You will always miss him. He is watching over you and is most grateful to you, I am sure. God Bless!
I relate to all you have shared. The causes of PSP...... It comforts me to think it was genetic and not something in the environment. For others not so comforting. We won't know until we know, but for me I need a cause that is more acceptable than others.
That reading this site is a full time job, amen. I guess that's why I wish that Jeff had been DX earlier. Earlier I had more time to read the site than later. I do remember that Jeff was always ringing his bell for this and for that and there was little time to attend his needs and finding time to read this site.
It's a beautiful day today in Los Angeles and today my sister, my daugher, and I are doing to an out door mall on the Westside.
You poor dear. Please don't feel guilty. You are doing all that can be done....For me, I thought maybe it was the new pest control . They came out sprayed and I still had ants!! they came back with a treatment "they stopped using years ago" After the treatment, B started showing signs of PSP. However, It's been said that a person has the ailment (whatever the progressive ailment is ) up to 10 years before first symptoms are seen. And as we look back on my husbands life , we did notice strange behavior about 4 years prior to diagnosis ....this allowed me to give up that I caused it with this stupid bug spray....Bottom line unless you eat the soursop fruit of Indonesia, you probably did not create the problem by neglect or something you did....Breath deeply, give yourself a hug and don't let PSP ruin your life through the guilt process.....
What an amazing young man and the awesome mother you are. 💕
He was so gifted and so very accomplished which says volumes about your support and nurturing care for him. ❤️
You did everything you possibly could in every way for him. ❤️Please don’t be so hard on yourself because you found the PSP site so late. You are able to aid so many others because of your first hand knowledge of its affect on Jeff 🎼 Helping others through his story will also help yourself 💕
I spent 30 years in such grief over losing my almost 13 year old boy that I forgot to celebrate the wonderful ❤️ years l had with him. I know longer cry when I gaze upon his adorable smiling picture I now can smile with him. You are are already doing this now with Jeff🎼 🌹💕🌹💕🌹💕🌹💕
Have a beautiful life celebration of your marvelous young man ❤️and celebrate Jeff’s🎼 Mother too
I think when we each share what "we wished" it helps others to consider.
I especially appreciate that you shared that you too lost a son. Yes, my son had 52 years of a very full life and believe me was like one at a banquet of life....he imbide on all the goodness of life and gifts of life.
God bless you and even though it took 30 years, your message should be told so that others think about joy and sweet and happy memories lost because of guilt and even grief getting in the way....now you can be reminded of the love you had for your son instead of the pain of your loss ....
Much to young to lose your son to such a dreadful illness. To see such a handsome and happy young man in this photo makes your loss so terribly sad. As carers we do as much as we possibly can but it seems that we can never do enough and so suffer from guilt of what if ..... something which is very hard to get over if we ever will. I hope your family day is a happy remembrance of your son. Jxx
The "guilt" the "wishes" are not so much a beating ourselves up, but sharing what "I"( as one in grief) am experiencing. I think "guilt" is part and parcel of grief. Guilt is not something to feel guilty about.
Thank you for your reply..................will this too pass? The pain will probably lessen. I will continue to share remembrances of my son that I lost to PSP.
While he was well/healthy he indulged in all the glories and gifts of life...a kid at a banquet.
my condolences... to loose someone to any illness is hard... as parents we expect to go first.. can't imagine your anguish and heartache... hope you find peace over time... you sound like a wonderfull mother...
I believe, after this experience, that we tended to our loved one in their illness and now we need to tend to ourselves (as the caretaker) in our grief. This is a HORRIBLE illness. My son was young. When my father died he did not suffer an illness with unknown causes and remedies.....his death did not carry the same toll on my soul/ my heart/mymind. I knew, the medical profession knew, what brought it on and ..............
Thank you for sharing your story and thank you for your continued encougement to us on this forum who are at a different stage of this terrible disease. I am so sorry for the loss of your son. It is difficult enough to watch a spouse succumb to this disease, I can’t imgine the pain of watching a child go through this decline.
Your story reaches me right where I am,as I am approaching 1 yr. anniversary of my husband’s death.
I too,still think everyday about weather I could have done more-at the least,could have been more patient with him. PSP is such a thief! It robs not only it’s victim,but also everyone who loves that victim! I pray every day for those still in the clutches of that terrible thief and for those who have lost their loved one.
Only one who has lost a loved one to this HORRIBLE disease.... that bring suffering to the one afflicted, and secondary pain to us caretakers, can truly understand.
For me, reviewing and sifting has helped me to understand with greater clarity the journey of this illness. I do not beat myself up when I see my part as opposed to ????. It helps me to understand and accept/acknowledge. I tend to be more cognitive than emotional and the clarity (which may change as more information and remembrances comes) helps me in the healing.
What a beautiful picture. Thanks for sharing your son's sweet smile, Margarita. What a terrible loss to you, your family, and the world. It's good to know your daughter and sister are with you and that you may be comforted by sharing memories of happier times.
I have always appreciated how articulate you are in describing your beautiful boy and his story. It is tragic.
I would never say that losing one family member is worse or easier than another, but surely, losing a child to this disease must be the worst. How many times you must have said "God, if it is your will, take me instead." I know you did. You are that kind of mother.
Please don't ever say that he lost time or opportunity because you didn't discover this site (or any thing else) early enough: This is a terrible disease...For Now...??Maybe not in the future?? and there is nothing more you could have done to save him. We know this from the story you've told of looking after him.
I admire how much you keep his presence alive through his story and pictures on this site.
No doubt, you will find another way to keep his presence alive: I think he would be a beautiful addition to a "banner" of patient photos, the way our dear Heady/Anne and her husband are on the PSP Association UK banner on this website! Maybe CurePSP would consider that? ...Or...would one of the fund-raising groups just love this story and photo to illuminate their drive? I think there must be some interesting way of Jeff, the creative, scientific, loving, generous, great young man "showing up" visually in this fight against PSP!
I hope the perfect opportunity presents itself to you
I think in the process of grief (towards healing), FOR ME, I need to review the journey of the illness and what for me impacted the choices that were made. Coming to this site LATE (no fault of mine or even the neurologist, but more the nature of the circumstances....Jeff's youth, unknowns of this disease at Kaiser Permanente, etc) DID impact my lack of information, and hindered me helping Jeff. It's not good or bad, it just is.................. Knowing more would not have stopped the progress (unless he had gotten into a trial that did), but it would have eased Jeff's discomfort and probably mine.
I am intent, as long as I live, in KEEPING REMEMBRANCES of MY SON ALIVE. Eventually, I will fade from this site, and my intent will not continue on this site.
Thank you for understanding.
Grief is a journey that we all travel differently with some commonalities.....as was PSP.
Abrazos, Margarita - My heart aches for you . I am also angry at this terrible, senseless loss. How wonderful that you have your daughter and sister to be with you😐
What a handsome young man. I am sorry that you must experience this grief. No parent should have to mourn the loss of their child.
I do hope that you will find ways to ease the pain; create new and happy memories while still being able to reminisce without crying....seemingly impossible tasks but hopefully doable....I to lost my loved one a year ago. My husband was diagnosed March '13 died March '17. And do remember no matter how much you knew and could do for him, PSP would continue to progress....giving ourselves a hug for the sacrifices and love we gave alleviates the guilt that wants to sneak up and bite us in the ....heart....
I’m just reading this tonight - wow! Incredibly talented and educated young man! Prayers to you and your family. I work in the entertainment industry, so I have heart for this posting. Blessings to you.
Thank you! I appreciate that you read about my son. I know how much you love your mom (it's evident as you share your journey). Memories of our loved ones, like CAMELOT, are to be shared and not to be forgotten.
Two years and much healing has passed and yet yesterday came a HUGE dip. It ended with me watching OLLIE AND STAN. Jeff loved Laurel and Hardy. So, it ended well, with warm memories and feelings of gratitude that Jeff was MY son.
May the warm memories remain, remembered, and shared.
Thank you for all the photos of your mom and the sharing of memories being made.
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struggling with PSP
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