I've started and re started this post so many times because I am struggling to convey my feelings about my mum's recent passing. I'm hurt, devastated, sorrowful, frustrated, angry- so many emotions.
The details of her PSP experiences are grim and conjure so much sadness.
My beautiful mum Rosa died on 28/12/19 at the age of 78 after a five year battle with PSP.
She suffered horribly in her last six months of life. Her final few weeks are indescribable. Her final moments were peaceful however.
With all my heart I do not wish this insidious disease on anybody.
I would eventually like to share her experiences with PSP to a research group in order for medical professionals better understand and treat the disease. It would be cathartic for me, as well as some sort of contribution to helping others in their battle.
Does anyone know of such a group and whether they welcome such feedback?
My thoughts are with everyone out there suffering from, and caring for, a loved one with PSP and similar conditions.
Much love,
Maria
Written by
Mzacc
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20 Replies
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So sorry to hear.
This disease is indescribable with all its twists and turns.
Sorry to hear that your dear mum suffered this terrible disease, the torture of watching someone you love ravaged by the symptoms still haunts me and talking about it helps to ease the distress. Have you tried counselling, the hospice offers this service if your mum was ever under their care.
So very sorry for your loss. She is finally from from the clutches of this insidious disease.
Tim x
Hugs to you! If you would be willing to share what happened the last 6 months of your mum's PSP decline on this forum,I believe it might be very helpful to you in your grieving as well as to others who are going through this. My mom who has had PSP for about 5 years (with a big decline in the past year) will be 78 in a few weeks and I wonder all the time what to expect next. I realize everyone's PSP journey is different but it's helpful to learn about others' journeys.
Please take care of yourself now. Time to find some JOY in your own JOurneY,
Dear Maria, Your loss is so recent and your wounds are open and painful. Grieving happens in its own time, different for each person, and it can't be rushed. Your Mum is at rest and peace. Now it is time for your healing to begin , be kind to yourself in thoughts and words. Remind yourself of the good that you did while caring for your Mum. It won't take away the grieving , but affirm for yourself that you did all you could and loving your Mum was the best care ever. Express all that you need to here or in a support group.
I am sorry for the pain that your mother, and you, have experienced. These are devastating conditions. For myself, I continue to be frustrated that there appears to be no wide-scale collection of data -- clinical signs and symptoms, disease progression, personal experiences with common denominators and divergences from the "norms," incidence in specific populations -- for example, that might lead to a sifting-through and identification of markers or therapies that can be helpful. Some of it, I think, comes from the fact that most neurologists do not treat many patients with CBD, PSP or MSA because they are rare, and it does not motivate acquisition of greater knowledge or research. I still remember when cancer treatments (in 1975 when a family member had lung cancer) were haphazard and knowledge limited and marvel at how far treatment of cancer has come. If it could only be so for the progressive conditions that are all too familiar to us!
I learn more from people here and other resources. We go every six months to the neurologist and geriatric specialist. All we can do is track the changes. The day-to-day tips and offerings are very beneficial, even learning about diet changes help.
I can relate to that. Just wish that treatment and management of these conditions would move on two, parallel tracks: the day-to-day caregiving for which this site is invaluable and diverse but informed data collection, research and clinical trials. A physician friend who developed a breakthrough chemotherapy for breast cancer told me that it is likely that whatever drugs or therapies will help CBD/PSP/MSA will come as an offshoot of research into another condition that is better funded and more widely distributed in the general population. So, I try to track Alzheimers research, ALS treatments, Parkinson's , etc.
I’m so sorry for the loss of your Mum, I no exactly how you feel, only looking after my mum from December until August such a short time, to go through all the symptoms very progressively, Mum had no noticeable symptoms until around February then getting diagnosed in June, all very sudden, then her death in August, I feel someone needs to no this does not seem normal in a PSP world, that it needs to be documented somewhere, how does this even happen, maybe a trigger from a knee replacement mum had in December could be the answer. It’s devastating for all involved and very sad, sending much love to you and your family xxJulie
It is tough to write and share but trust me it helps - and you have wonderful people here to share with. I too posted recently after my mom moved on in December. Her last 6-12 months were just not watchable , I don’t know what she felt when she lived that phase.
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My darling Mum
deterioration of mum 
My mum is also free at last. Thank you for your replies.
Me again... progression with mum
