Can it be PSP even if there are no instances of falls for 2 years?

[shobacg]

Is it possible for someone to have PSP and still not have falls? How early or late does one start having falls in the case of PSP? I am a 47 year female and I started getting tremors on my left hand 2 years ago. The neurologist said it is parkinsonism. Recently I went to another neurologist who says it is probably a PSP variant of parkinsonism. The only symptom I have is tremors and my speed of walking has reduced a little. The neurologist suspects slowness in my vertical gaze. She started me on Syndopa plus - i am taking 1 tablet each for 3 times a day. I do not see any improvement in tremors. As I read that one of the earliest symptoms of PSP is falls due to imbalance and I have not had any fall for the past 2 years (thank God), I am wondering if this could be PSP. Any pointers will be helpful.

[Grsrbhr]

It is my understanding that early falls and a lack of tremor are both sign posts of psp. My name is gary and i have psp which was originally diagnosed as straight up parkinsons, however i began falling very soon after my diagnoses and do not have tremor, which were signs for my new neurlogist that it was psp. God bless, Gary

[Hidden in reply to Grsrbhr]

Welcome Grsrbhr as well,sad to see new people here but you have joined a group like no other,wealth of information and first hand experience.

Dee in BC

[LynnO]

Hi Shobacg,

My husbands first symptoms that stood out were his eyes and slower processing of thoughts - finding words etc. His eyes, although he could still look up and down, he would see double and couldn't focus on smaller print. His eye dr. said his eyes tested fine. He still doesn't fall a lot, though he walks like he's drunk all the time. Everyone's symptoms are very different in timing and the extend of the symptom. My husband does have a slight tremor now and then in one hand. Hopefully you don't have PSP, but time will tell. Maybe make a journal of all the symptoms new and ones you've already have to take with you the next time you go to your neurologist might give him/her new insight.

Take care

LynnO

[shobacg in reply to LynnO]

Thanks. I will start maintaining a journal as you suggested.

[Hidden]

It's pretty standard treatment to receive Parkinson meds, it seems to be one way of ruling out Parkinson and confirming PSP.You have joined a group with a wealth of knowledge and first hand experience.My husband did have tremors in the beginning and as said walked like he was drunk and falls backwards.

Dee in BC

[rriddle]

Falls are not required by the diagnostic criteria. Falls are a primary symptom of the Richardson's Syndrome type of PSP but not the other types. Can you see a movement disorder specialist?

[teresa1988 in reply to rriddle]

I echo what riddle said...... try to see a movement disorder specialist. They are so very much more in tune to and knowledgeable about these conditions as opposed to a general neurologist.

You are correct in that early vs late incidence of falling in one of the things that differentiates PSP from Parkinson's Disease.

[LuisRodicioRodicio in reply to rriddle]

Agree with rriddle.

According...

Update on the Diagnosis and Management of Progressive

Supranuclear Palsy

(April 2016)

Alicia Garrido1 & Dolores Vilas1 & Eduardo Tolosa

There are at least 2 kinds of PSP without falls.

- PSP-P (Progressive Supranuclear Palsy-parkinsonisme) around 30% cases.

(Tremor (jerky postural and rest); bradykinesia mild to moderate may be asymmetric; rigidity limbs more than axial).

(No falls, no eye movement abnormalities, no cognitive decline)

(50% of improvement as response to levodopa)

- PSP-GF (Progressive Supranuclear Palsy-with prominent freezing of gait) 1% cases.

(Bradykinesia small amplitude with no decrement, rigidity axial more than limbs)

(No tremor, no falls, no eye movement abnormalities, no cognitive decline, no response to levodopa)

Hugs.

Luis

[shobacg in reply to LuisRodicioRodicio]

Thanks for the elaborate response.

[yellowmarlene in reply to LuisRodicioRodicio]

Thanks for the reply on the 2 kinds of PSP. I can really relate with the PSP-P in my husband

[rriddle]

See:

brainsupportnetwork.org/rec...

[allotmentartist]

Welcome shobacg my husband got diagnosed in 2016, he is still convinced he doesn't have psp but he has all the symptoms apart from the falling ,saying that he does fall back into his chair when trying to get up,it takes a few attempts to get out of the chair .

[Hidden]

No two people follow the same progression with PSP. Larry’s first fall was in 2011. He was diagnosis in May of 2015 after first being told he had Parkinson’s in 2013. Over all those years he’s only had about 5 falls. In that time his speech, gait and ability to swallow have declined. His is a slow decline to date.

The best thing to do is have an exercise route to do. This is the most beneficial thing to do for PSP. Medications tend to be of little value. If you aren’t seeing a physical therapist think about starting.

[shobacg in reply to Hidden]

Thanks. My neurologist also suggested doing some physical exercise. I do Yoga, especially around 30 minutes of meditation. That is expected to keep the nerves calm.

[LuisRodicioRodicio]

Stages of PSP and standards of care_v3_2018-02-01

(Mainly based on CurePSP and PSP Rumpus Room information)

These phases or categories often overlap and are not the same for all patients. Some may have two or three phase 1 problems and one phase 3 problem. Some may never have all of the problems, but most will need extensive help to live out their lives.

It is wise to gain from the patient, specific information as to feeding tubes, restorative therapies, etc. before the disease is well advanced; a living will is a good idea, so that loved ones will know how the patient wishes to be treated, should life threatening acute problems occur. Long term care will probably be needed and plans should be made before the patient becomes unable to participate in the planning.

Early Stage (Including diagnosis)

(Years 0-1)

- Unsteadiness, clumsiness, and nonspecific visual symptoms are the most frequent initial patient’s complaints.

- Walking but occasionally unexpected falls (backwards mainly) or stumbling.

- Change in walking rhythms/patterns.

- Difficulty reading due to gaze palsy. “Blurred” visión.(Examinations by eye Dr. generally will only find normal visión physically)

- Mild vocal changes such as quietening of voice or difficulty in vocalization. Slurring, etc.

- Changes in mood. Some lethargy, apathy, no desire to do anything, irritability, difficulty in concentration.

--Changes in sleep patterns.

- Some deterioration of handwriting and difficulty writing.

- Reduced social interaction.

Mid Stage

(Years 2-3)

- Difficulties to drive a car.

- Problems sitting down (just “plops” down) or getting up.

- Walking with aids.(Cane, Walker, ..)

- Difficulty downward vertical gaze. Limited eye movements making eating and walking more difficult.

- High risk of falls. Increased number of falls.

- Speech difficult to understand.

- Change in handwriting to very small and messy.

- More impulsive behaviours.

- Cognitive problems; decrease in sound judgement, decrease in modesty;increase in impatience and irritability.

- Marked apathy.

- At risk of choking.

- Requires a high level of supervision.

- Lack of response to PD medications.

- Backwards Falls.

- Vertical Gaze Palsy. Stooped posture because of visión problems; can´t see downward easily.

- First episodes of incontinence

I hope and I wish these notes are useful.

Hugs.

Luis

[JantheNana]

I agree with all the above responses.The only thing I might add is that when my husband’s neurologist first started suspecting PSP instead of straight up Parkinson’s,he sent him to a movement disorder specialist.He was given another MRI of the brain (he had had one a few yrs previously).The MRI showed what they called a “hummingbird” effect,which is characteristic of PSP. Hope this helps in some small way

My husband passed away 6 months ago,just a little over a year after his PSP diagnosis.

[shobacg]

Sorry to hear about your loss. I had taken an MRI of the brain initially when the tremors had started. The neurologist said it looks normal.

[LuisRodicioRodicio]

Hi shobacg!

All PSP patients seem to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.

In short these are our experiences on PSP-RS disease expecting they could be useful:

First: If physicians agree that there is suspicion of a Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really help for a while. It won't work forever, but it'll work for a while.

Recently (08-2018) and apparently with good results, Rock Steady Boxing exercises applied to PD patients are being tested to newly diagnosed PSP patients.

Rock Steady Boxing for Patients with Parkinson's: youtube.com/watch?v=XC1h4yg...(Not working as expected?)

Hugs and luck.

Luis