Then one morning, came the headline. A beloved pianist diagnosed with the same condition. Advanced stage. And suddenly, everyone knew. The illness had a name that mattered. News articles appeared overnight. New conversations began. Promises of research. Funding inquiries were made. What had lived for decades in the shadows was now in full view.
Her son—her caregiver—saw all of this unfold. A sharp ache of injustice in his chest. There sure was relief in the attention the celebrity could finally bring. But beneath it, so much grief. For how easily the suffering of ordinary lives - like his mother’s and so many others - is ignored until someone famous is touched. How his mother had made herself visible… again and again. Not for herself. But for those who would come after. And yet the world had looked away. He knew well the pull of the human mind. How we’re drawn to what is familiar. Our hunger for the dramatic. Our reflex to look where the light is. He didn’t resent it. But he also saw the cost. His mother had lived this. Is still living it.
But maybe now the door was opening. Maybe others will finally be allowed in. Perhaps his mother’s story too would take its place. That her voice might still reach others. Maybe the meaning lies in that. That people will start to see how cruel the disease is. How long the wait has been. Finally, there is hope.
And yet, even in this hope, he felt sorrow. Of being seen only in the reflection of someone more luminous. The sorrow of a life having mattered — too late.
By Bhavna
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My husband was a military man, a Romad in the Airforce. He was diagnosed with PSP Jan, 2022, at the age of 62. We have been so blessed to have the VA helping us, and if not for them, it would be impossible to keep him home. For those Veterans diagnosed with PSP, or many other disorders, bring a list of the locations you have been stationed, to your nearest RSO or American Legion, and ask for help. They can help you file for a service connection, even if denied previously, if you are eligible…PSP, along with Parkinson’s and many other disorders have now been found to be “presumptively caused”. My husbands first duty station was Guam, which was a very toxic island many years after the Vietnam war.
I won’t go into depth about too many symptom’s, as they are often different for everyone, but will instead try to address things that have been helpful, and those that have not, in hopes that someone out there finds the information useful. His initial symptoms were an inability to see clearly, yet not one Optometrist or Opthamologist checked for the tell tale vertical loss of eyesight that helps to diagnose PSP. Fixation was an issue also. Nothing ever helped his vision improve. Both vision and an inability to plan, or prioritize began 12 years, or more, before diagnosis. He would sound drunk over the phone, yet wasn’t drinking. His symptoms that led to a neurological appointment were tingling in his upper left thigh, and difficulty walking. The neurological exam eventually led us to a neurologist specializing in “movement disorders”. After only two appointments, a “most likely PSP” is all that is needed to confirm, along with head and neck diagnostics such as Cat scan with and without barium, neuropsychological testing. We did not want invasive tests, such as a spinal tap done, but did have a test to check his autoimmunity, just in case, but his symptoms were all so clearly PSP. The outcome… there is no treatment, and no cure, but like so many of you that are dealing with the care of a loved one with this devastating disorder, there are things that can make it easier.
PSP is a presumptive for any military member that can show they were stationed where toxic chemicals were used or stored, so if your loved one retired honorably, do some research online, and in their military files. Don’t wait for PSP to take it’s course…. File for SSI immediately open diagnosis, as the
system is slow process, and remember to Appeal, appeal, appeal until you get a “live judge”. Sometimes, if you are too overloaded, it is well worth paying for the SSI lawyer. They can take payment of only as much as they are legally entitled to take, from back payments. Keep a log of every Doctor seen, with their contact information etc. Ask for copies of Cat scans, MRI’s, medical diagnosis notes etc. and keep s copy for yourselves. Be proactive! PSP won’t wait on you. My husband couldn’t get out of a normal hospital bed, and insisted on using the toilet every two hours, even at night. His autonomic nervous system was failing, so his body wouldn’t move normally, so he and I were doing some crazy things (like a wheelbarrow movement, I would rotate him in bed by lifting his legs by the calves, as he would wiggle this torso to a position where I could pull him to sit up, then bear hug him from the back after lifting him, to walk with a rollator. I finally found a bed, that rotates him into a sit to stand position. It saved us both from every injury imaginable! There are multiple manufacturer’s, offering beds like this, of differing qualities, but I recommend the one made in the USA. It’s built like a Mack truck, and has been a miracle. Just keeping him on his feet, letting him maintain a little dignity for as long as possible , we have avoided a catheter. He now urinates into a “female” canister (no sharp edges on the opening) every two hours. The bed (and canister) have been located in the family room…why limit yourself to the bedroom when other rooms might work better.
Ask Medicare, if over 65 and eligible, to mail you the book “Medicare and you” for the current year. Familiarize yourself on your states Medicare benefits. Some States offer home-care, like the VA. I use all the hours on a male, nighttime caregiver, since my husband insists on it. Save your money, and be selective on medications…PSP causes medication sensitivity, and almost every drug has dizziness’s on it’s list of side effects. For rigidity pain, Muscle relaxants, antidepressants, we’re in affective, but limited relief came from menthol and capsicum creams. Tylenol causes less gird, then aspirin. You will make them angers with you, because you have to protect them from themselves, you constantly ask them to repeat? or say that again? Watch for impetuousness; climbing stairs, going outside. They need help sitting, standing, transferring, and eventually eating, bathing etc. Don’t take what they say to heart. They are locked inside, and you will often become their worst enemy. It’s just the nature of the beast…always telling them “No”. I’m sleepy, but will answer any questions that anyone might have. One last thing… the fluid that builds up in the head, overflows their eyes, nose, and throat, especially when eating. Bring tissue or a roll TP paper when feeding. If you watch for congestion in their nose (especially after choking) blow their nose and feed before every other bite. Buy a nosey cup, and a lift recliner. County Area of Aging or Goodwill offer DME, often freely. If on Medicare, find a Neurologist that works with Medicare, and ask him to prescribe DME as needed…electrical wheelchairs, suction devices etc. Call Medicare to see if the item is covered before accepting delivery from a medical supplier. Almost all of the DME failed to work for my not too small boned husband. Guards are a urinary pad for men, that can be easily changed without getting men up. Pure wick for men or women, and use the women’s for men suffering from penile retraction. Learn to transfer properly and save your back. In the long run, save the money you would spend on doctors and drugs, and use it to get the the things to make life easier overall. Facilities will Cost much more then buying the equipment you need, in the long run. Hire a word of mouth refered caregiver…ask the OT and PT if they know a good caregiver, and have them work a few nights. Utilize stores that bring pre-purchased online items to your car or home delivery, meals too! And remember to Stay Healthy, Stay Strong, and Stay Focused on our Lord…He is always Faithful. God is Good 🙏
I have a 54 yr old niece who has been diagnosed with PSP. It is cruel, she has not been put on any medication at all. being told there is nothing that can be done. Not fair for anyone especially at 54.
Beautifully written ❤️