Onset/diagnosis after years

[Paulaaaa]

Good morning. I welcome you very warmly. This is my first post. I am not from UK, so my English is poor, sorry for any mistakes.

In a nutshell: my aunt got sick in 2012. The diagnosis: Parkinson's. Treatment with levodopa had short-lived effects so doctors decided to use DBS therapy. DBS did not have the desired effect; my aunt has electrodes in her brain that stimulate dopamine production. After a couple of years of struggling, doctors couldn't make a good diagnosis, left between parkinsonism A typical and msa. At this point, my aunt is hooked up to an apomorphine pump.

I came across this forum thanks to God and we suspect that it is psp that is destroying auntie and our family.

Aunt doesn't walk, speaks in whispers is unable to maintain upright posture on her own so in the chair we constantly have to weaken her with pillows. Sometimes there is whooping and incontinence. The limited knowledge of neurological diseases in my country is the main problem we face, and we have to search on our own. Dear friends how can we get a Good diagnosis, good medicines? Maybe this condition that persists is caused by parkinson's drugs, and my aunt should not take them?

All the symptoms I have read about here my aunt has. It's very difficult we can't deal with it with the family.

Thank you when anyone reads this, I salute you very much

Hugs Paula

[GoGreen]

I am so sorry you have had to struggle so long for a diagnosis, but it is so similar to Parkinson’s that often gets misdiagnosed. This is a very good place to get lots of help, suggestions, and simply to vent!! It is a very tough disease that there is no cure for yet! You are not alone with so many that have been through it or going through it!! Actually some patients are helped by carbadopa meds for awhile but when the disease gets worse, usually doesn’t help. Go to Cure PSP and it will give you much information! Take courage, you are not alone!!!

[Dickwin]

Paula,

I don't know where you live or whether you have access to a teaching and research hospital, but if you do find out if the have a "movement disorder" neurologist. These diseases are so rare that most non-neurologist Doctors have never even heard of them. And getting properly diagnosed can take years. My wife's onset was 11 years ago, but she was mis-diagnosed with Parkinson's for several years. She is now in a similar state to your aunt after finally being properly diagnosed 6 years ago. BTW, two highly regarded movement disorder neurologists who examined my wife disagreed on their diagnoses: One thought my wife had CBD and one thought she had PSP. As the disease has progressed, it is looking like the PSP diagnosis was the correct one.

Hang in there.

[Paulaaaa in reply to Dickwin]

I sympathize with you very much. 11 years of living with this disease is a very difficult battle. How is your wife doing now? Is she able to function on her own?

[45purple]

Hi Paula welcome to the group diagnoses is not an easy one. Last year after nearly a year of tests my husband was diagnosed with CBD & Parkinsonism. I hope your Aunt can get help and the right medicine she needs. Lots of information in this group My husbands farther was Polish and came here during the war .💜

[easterncedar]

For what it’s worth, I don’t know that Parkinson’s medication generally has much effect, good or bad, on PSP. Some individuals here have reported temporary benefits, but as far as I know (and my information may be out of date) the treatments are generally for symptoms, like insomnia, incontinence, drooling, infections, muscle cramps and so on, rather than in hopes of treating the brain damage that IS the disease.

Our neurologists had us try every medication available, but I think it was generally aimed at assuring us that we had made every effort, rather than with real hope for a positive outcome.

[Paulaaaa in reply to easterncedar]

That's the worst part: we don't know whether these drugs have a positive effect or a negative one. I think your aunt may need to take some mobility enhancing drugs (if any). For the time being, my aunt is recumbent, she had a cold 2 weeks ago and hasn't gotten up since (she walked to the bathroom and kitchen with our help). I'm afraid that the cold has worsened her condition, I'm hoping that she is still weakened from the fever and medication and she will improve to the point where she can get out of bed again holding our hands

[kafunzi123 in reply to easterncedar]

I agree entirely! Only symptoms can hopefully be treated. Also a lot of therapies are more for psychological satisfaction that one did not leave any stone un-turned!

[timbowPSP]

Djen dobre Paula! This is tragic for you aunt and for all family. I am male, and PSP was diagnosed 2016, I was then 76. Still very active and busy life, but not so good as before. I don't want chemical drugs, so have made my own protocols. Please will you send me your email address so that I can send these information, ideas, experience and suggestions to you - 3-A4 pages. How old is your aunt? My best wishes TimbowPSP

[Paulaaaa in reply to timbowPSP]

This is my e mail : [e-mail]

My aunt is 51 years old.

[racewalk in reply to timbowPSP]

hi, could you share your protocol with me? My wife is in a similar situation than Paula’ relative. Thx a lot.

[timbowPSP in reply to racewalk]

Hi Racewalk. Happy to share my experiences and suggestions, but need ur email please if you are happy to share? Best TimbowPSP

[timbowPSP in reply to timbowPSP]

Hi Racewalk, did you send me ur email?I can't find it! But have set the info to another PSPer (Gardenia), also. Cheers Timbow

[GardenofGardenias in reply to timbowPSP]

My father was recently diagnosed too. Appreciate you sharing this information: [e-mail]. Thank you so much.

[wear1947]

Hi Paula. My parents were Polish jews from Warsaw, but i can't speak Polish.

Going to the point. Only a neurologist with NMR with contrast and dynamic imaging, can confirm if it is PSP. There are 5 variants of PSP. Although, you can ask your aunt to look to a pencil while you move it down. Could she follow the pencil?Does she fall backward? Has she problems with swallowing?

Meanwhile you can look for phonoaudiologist, it will help with voice and swallowing.

Also she will need a physical therapist to help with the pain in the muscles of the legs.

Good luck and big hug

Elena From Buenos Aires Argentina

[Dosco]

My wife has PSP. We were "fortunate" in that we got an accurate diagnosis right away so we could plan for her care. Initially, I took are of her and then brought in home care workers in the morning to get her dressed, toiletted and showered and then again in the evening to change her and get to bed. Later even this was possible as her condition advanced and it was no longer safe to care for her at home. So For the last two years my wife lives in a continuing care facility which I pay for. She gets medical attention has specialized staff (occupational therapist, doctor, dietician etc.) to care for her and the safety equipment.

It's been a long and difficult journey only made easier by planning ahead and relentlessly advocating for the patient.

Find the right resources in your community.

Good luck