Mom

[tlew49]

When I was a kid, I always wanted to be a doctor. I never had a problem with grades and I was a pretty good athlete. I spent a lot of my childhood nursing baby field mice after their nests had been exposed and their parents killed by my dad's overzealous lawn mower. I would raise them up with a heating pad and eye droppers filled with milk. My mom would freak but I would put bandages on their uninjured paws and carry them about in my pockets.

After college, I applied to medical school and was accepted. I got married, graduated third in my medical school class, had two kids and went on to a prestigious internship.

Then my mom got sick.

It started off with some symptoms of dizziness, nothing special, just a feeling of being off kilter or a slight tilt to the room. I thought it was her eyes so I had her cataracts removed. This didn't help. Her dizziness persisted.

After a few months, my mom’s personality began to change. Little, nasty slurs were whispered as asides to my kids about their behavior. .She started to forget things. She started to insult me.. Definitely not my sweet, loving mom.

This mandated a trip to the neurologist. The CT and MRI scans showed nothing.

Weeks went by and her symptoms didn't change.

Then she started to fall.

When she broke her ribs, she landed in the hospital for a week. The doc in the hospital said that not only did she have broken ribs, she also had a gaze palsy, past pointing nystagmus, a delayed blink reflex and poor convergence.

In short, she had PSP.

As soon as I got the diagnosis, I hit the medical books. For the life of me I could not remember any symptoms or the prognosis of PSP. I recalled the disease being mentioned once in my entire medical career. So that night I stayed in my office and read late. And when I finished, I cried.

For the first time in my medical training, I could not save my patient. I could not treat her, I could not heal her or extending her life expectancy. As a physician, I was helpless to save one of the people I loved most in the world.

And my life was changed forever.

With all my skills as a physician, I was as helpless as my hairless baby mice.

[dorothy-thompson]

Dear twlew49

Thankyou, you have articulated what everyone who is caring for a PSP suffererer is going through.

dorothy thompson

[ineke]

dear twlew49,

I have PSP and I recognised everything, unfortunately. Good luck with yr mom!

ineke

[kay1]

I have been trying to think of appropriate words to say after reading your moving letter. There is nothing I can say to help, comfort, or reassure you. My only consolation is that all patients on this site with the PSP have loving caring families which they thoroughly deserve. It is so hard.

x

[tlew49 in reply to kay1]

kay1 - hard doesn't describe it. PSP became my enemy. Nothing was available to treat it and the expert neurologist in movement disorders said he could offer us only palliative care. In the same breath, he asked for my mom's brain at autopsy. I grew ashamed of my profession.

This disease has humbled me and taught me such sympathy for all my patients, especially those suffering from neurologic disorders.

My mom passed away after 5 years of intolerable suffering. Every day she asked me to end her life. Every day I had to say no. She died on my birthday weighing 78 pounds in a fetal position. I rocked her and told her the best birthday present she could give me was to let go.

I have become a believer in "dying with dignity" and the death with dignity laws in Washington State and Oregon. No one should suffer so much. We treat animals better.

[SuzieQ]

Very, very moving and I agree totally with allowing people to end thier lives with dignity. My hubby has PSP and his falls are becoming more and mor frequent. It is heartbreaking to watch him trying to move around, even with the help of walking aids and although I follow him around like his shadow, he still manages to fall - usually when I have just turned to look away! This morning we had yet another such incident while he was in the bathroom. This time he escaped with a couple of minor bruises to his shoulder - just to add to all the other bruises he has from previous falls over the past few days. I cried this morning in front of him, which is something I try very hard not to do, but I just couldn't hold back the tears today. I feel so helpless and can only imagine how you must feel being in the medical profession. This disease has to be one of the most cruel things around. God knows how I've prayed for a cure or some drug to ease the condition.

I know that all of us who use this site are struggling, either as sufferers or carers and it is comforting to know that we are not alone.

Good luck to everyone and let's hope a cure will soon be available.

Take care everyone. Stay strong and love to you all.

SuzieQ xx

[tlew49]

SuzieQ - We used to joke about putting my mom in a football helmet. Her face was always bruised and one eye or the other always sported a shiner. People asked why I just didn't tie her to her wheelchair. I did!! I had seatbelts on her, safety straps, harnesses, you name it, but somehow, she would decide at the most inopportune time to unbuckle them and get up. I think she was a little sneaky, waiting for my attention to be focused elsewhere. Then she would pry loose the restraints, tip forward and fall.

I never gave her a hard time about it. it was sort of her way of lashing out against the disease.

[bobt]

Dear tlew49

Your story sounds so familiar to me. Although PSP had never been mentioned until about 6 months before my mum died. The neurologist had said there was something wrong, which we obviously knew, but they couldn't say what. I now feel quite bitter, if we had known 3-4 years ago about PSP we could have spoke to my mum when she could still hold a conversation, and ask her what she would like to do as the illness progressed, however we were never given that choice, she died on 22 February this year.

[Fiona_McL]

Thank you for sharing your story with us. PSP has a devastating impact on us all. My mum died in July 2011, but we're still dealing with PSP!