Stage 4 Metastatic Prostate Cancer AND NOW also Parkinsonism and PSP

[kick-prostate-cancer]

You would think that one progressive, terminal illness would be enough to deal with, right? Well, my husband was just also diagnosed with Parkinsonism (not Parkinson's Disease) and PSP (Progressive Subneural Palsy).

We thought his issues were due to either chemo brain or ADT. After seeing a Neurologist at Stanford, he received the PSP diagnosis. He's gettting tested for ALS next month. Either way, these diseases are progressive, terminal and there is nothing they can do to stop it's progression.

Have any of you also received the diagnosis of PSP or ALS?

[ctarleton]

So sorry to hear of the dual diagnosis.

Here's an informative patient-caregiver PSP reference, courtesy of the NIH.

ninds.nih.gov/Disorders/Pat...

I get what you mean when you talk about no longer having just the one progressive, terminal illness on your plate. Bummer. It certainly "complicated" things for us when I got an advancing stage IV metastatic melanoma diagnosis about 1.5 years ago on top of my advanced PCa situation. It's taken time to wrap our heads and hearts around all the implications and the evolving treatments/decisions/changes/priorities in our lives.

One day, week, month at a time.

[kick-prostate-cancer in reply to ctarleton]

Thanks so much, ctarleton! We work at taking one day at a time and enjoying our QOL. He doesn't have any pain yet ... thank God!!

[noahware]

While these diseases may be progressive, please do not give up hope that there may be some ways to at least slow the progression. There is early evidence that it might be POSSIBLE for a ketogenic diet to slow the progression of some neuro-muscular diseases (of brain-energy metabolism) in SOME patients, so that avenue might be worth investigating and considering.

The Charlie Foundation was started to support the application of the diet in kids who did not respond to standard treatment for epilepsy, where it has proven effective. They have expanded their mission to help further study of the diet in many OTHER disorders, too, including ALS. Here is a link to a page on that:

charliefoundation.org/am-i-...

[Jalbom49 in reply to noahware]

I agree with Noahware. Also statins have been associated with neurological disfunction. If he is on them a trial stoppage may be helpful.

Ten years ago statins put my well controlled diabetes completely out of control till I went off them. A lot of side effects are not well reported.

[kick-prostate-cancer in reply to Jalbom49]

Thanks, Jalbom49!

[kick-prostate-cancer in reply to noahware]

Thank you for your response and the link, Noahware!

[j-o-h-n in reply to kick-prostate-cancer]

I feel his pain...... With my Pca I also developed a Lung Melanoma..... Two for the price of three....BTW What is his age? Keep on keeping on...........

Good LucK, Good Health and Good Humor.

j-o-h-n Wednesday 03/03/2021 6:35 PM EST

[kick-prostate-cancer in reply to j-o-h-n]

j-o-h-n-, he's 72

[j-o-h-n in reply to kick-prostate-cancer]

A young whipper snapper......... Good, that means he's young and will be around to beat both maladies. God Bless...

Good LucK, Good Health and Good Humor.

j-o-h-n Wednesday 03/03/2021 6:56 PM EST

[kick-prostate-cancer in reply to j-o-h-n]

I wish his Neurologist and Oncologist were as optimistic as you!!

[j-o-h-n in reply to kick-prostate-cancer]

Remember the glass is half full..... Most doctors are walking dummies....no time to be compassionate....I asked my cardiologist what would he do/be if he wasn't a doctor..... he said "own a pizza restaurant".....I asked my oncologist the same question and he said "a movie director".....Did you ever ask your dear husband what he would be?

I would love to be a clown......

Good LucK, Good Health and Good Humor.

j-o-h-n Wednesday 03/03/2021 7:06 PM EST