PSP Symptoms & Diagonsis


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PSP Symptoms & Diagonsis

Postby NIyer » Tue Sep 02, 2014 5:59 pm

Hi
I am new to the forum and have queries related to PSP Symptoms & Diagonsis. My mother age 65 showed symptoms of PSP(balance issue while walking,falling backwards,weak eye movements) over last 1 year and the neurologist thinks she has PSP. We did the blood tests and MRI scan which showed no abnormalities.
1)I understand PSP sometimes is difficult to diagnose so just want to understand are there any other methods to confirm its PSP for sure.
2) As advised by the neurologist my mother is currently taking Levodopa(250 gm) daily and off late she is having difficulty getting sleep and has strong urge to go to bathroom for urine and motion in the night. I am thinking of getting advise from my neurologist on getting some mild sleeping medication that might help her to get sleep. Would you know if there could be any side possible side effects in taking mild sleeping medication with a PSP condition.

Appreciate if you would be able to share your thoughts.

Thanks
NI
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Re: PSP Symptoms & Diagonsis

Postby Robin » Tue Sep 02, 2014 7:04 pm

Welcome but sorry you have need to be here.

1) Only way to confirm a diagnosis is to examine the brain after death. We encourage everyone here to make arrangements to donate their loved one's brain upon death. The CurePSP brain bank is at the Mayo Clinic.

2) Sometimes even "mild" medications are not so mild in some people. The only hard-and-fast rule about PSP and sleeping medication would be to avoid something like Benadryl, which is anticholinergic. Many people use an anti-depressant that also has sedating properties as a medication with two purposes.

You didn't ask but, FYI, most people with PSP do not take levodopa.
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Re: PSP Symptoms & Diagonsis

Postby mustang » Tue Sep 09, 2014 7:01 am

Hi,
I'm also pretty new to this site, but unfortunately not new to PSP/CBD. My husband at age 56 probably has a combination of both PSP and CBD, although like Robin said, no one will know for sure until a brain examination after death. It took about 4 years to come to this diagnosis, and our neuro still stays "probably" is one or both of these two diseases. His progression fits some of each of these two, and nothing else seems to fit. Levodopa is usually used for Parkinson's disease, and though my husband has never been on it, I have heard that it may for a very short time help with PSP (and sometimes it won't help at all), but it's never lasting. Maybe this is another way your dr. is checking his diagnosis. My husband has a great deal of problems sleeping. He will take Ambien CR to help, but if he takes it more than a couple of days in a row, and stops, he won't sleep at all. He was on Cymbalta, but that didn't help with his sleeping. Although what doesn't help one person, may do wonders for someone else. This is certainly not a "one size fits all" type of disease. All you can do is try different things, and when those stop working, try more. Talking to your dr. is a great start! Our biggest struggle at the moment is my husband's cognitive issues. We purchased a u-step walker, shower chair, etc for his balance, but the cognitive symptoms we're still trying to get a handle on. Good luck and remember to "breath". It's a long journey in front of all of us.
One day at a time...
Mustang
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Re: PSP Symptoms & Diagonsis

Postby boxcar9 » Wed Sep 17, 2014 11:26 am

:)
Welcome to the forum. Sorry you are here.

My mom uses trazodone (an antidepressant) for sleeping. I think it has worked wonders for her. (She is very drowsy within 30 min of taking it--so I've got a short window to actually get her into bed) I do let her sleep longer than 8hrs--she seems to function better getting more sleep.

The trazodone seems to have much less side effects than the typical sleep meds. Her geriatric primary care prescribed it.

The neuro/sleep dr at Mayo was very alarmed when another sleep dr had put her on klonopin and had us remove it. Thank goodness he did--it has a lot of side effects that are not appropriate for someone with a movement disorder, not to mention the potential withdrawal effects of removing it for that class of drugs.


ALWAYS REMEMBER:

GO LOW and GO SLOW

This is the motto that has been stressed to us with regard to addition of new medication and removal of current medications. The "low" refers to the actual dosage (milligrams or micrograms, etc) and the "slow" refers to the frequency.

My mom has a myriad of ATYPICAL symptoms. Drs are baffled. I've been giving the symptoms lots of "names" lately--best kept for home use rather than public use. 8)

We have made the decision for brain donation. It was easy for us--it long been her wish for her body to be used for science.

I'm pretty confident that one day when we get that report that it's going to have SEVERAL disease pathologies listed: PSP, CBD, DLB and MSA for starters. She's has multiple symptoms for multiple conditions and it's not going to be tied to just one disease.

I hope you are able to see a neuro that is a movement disorder specialist.


Even though my mom was in a holding pattern of waiting for appts with local specialists, I pursued getting into Mayo in MN--it is closest to us. They did a PET scan and provided us with COLOR pictures at the follow up appt showing the dysfunction in her brain as compared to a normal one and one with PSP. Hers looks MUCH WORSE THAN the one with PSP.

Her MRI did not show the "hummingbird" sign nor anything of major concern. Mom's blood tests almost always come back normal.

You don't say if you are male or female, but this may apply anyway: Put on your big girl pants, muster your inner strength, and gather your allies--you & your mom are in for a long, unpredictable ride. I'm not trying to frighten you. PSP is a daunting disease and it should be reserved only for those with incredible strength--but it isn't. The important thing is to cherish the good moments when they come along.

I also strongly encourage you to investigate participating in clinical drug trials since there is no treatment for PSP/CBD. There is one that just started and another one that's coming in 2015. AND get her going with some type of physical activity. The routines you set in place now, will serve you well in the long term.

Best wishes!
Deb
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Re: PSP Symptoms & Diagonsis

Postby Robin » Thu Sep 18, 2014 9:35 am

Deb,
Klonopin is very effective for many people with movement disorders. And it's prescribed by many excellent clinicians, such as Brad Boeve, MD, at Mayo Rochester. Like all drugs, it's helpful in some and harmful in others.
Robin
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Re: PSP Symptoms & Diagonsis

Postby boxcar9 » Fri Sep 19, 2014 12:39 am

:)

I should have included some reference information. After all, the more informed we are, the better decisions we can make for our loved ones.

I do understand that some people use it, but I only found where it is indicated for seizure disorders or panic disorders--not that it matters.
After all, we are using trazodone as a sleep aid and it is approved for use as an anti-depressant.

I meant to imply that it was that particular doctor's (neurologist w/speciality in sleep @Mayo-Rochester) preference that klonopin not be used in patients with movement disorders. He felt like it could be setting them up for additional fall risk due to lingering "grogginess".

Here is a link to 18 pages of info about klonopin:

http://www.gene.com/download/pdf/klnopi ... ribing.pdf

The concerns for someone with a movement disorder using this drug that stand out to me (from the link) are the following:

WARNINGS
Interference With Cognitive and Motor Performance:
Since Klonopin produces CNS depression, patients receiving this drug should be cautioned against engaging in
hazardous occupations requiring mental alertness, such as operating machinery or driving
a motor vehicle. They should also be warned about the concomitant use of alcohol or
other CNS-depressant drugs during Klonopin therapy (see PRECAUTIONS: Drug Interactions and Information for Patients)


Hypersalivation:
Klonopin may produce an increase in salivation. This should be considered before giving the drug to patients who have difficulty handling secretions. Because of this and the possibility of respiratory depression, Klonopin should be used with caution in patients with chronic respiratory diseases.


Dose Changes:
To assure the safe and effective use of benzodiazepines, patients should be informed that, since benzodiazepines may produce psychological and physical dependence, it is advisable that they consult with their physician before either increasing the dose or abruptly discontinuing this drug.


Geriatric Use:
Clinical studies of Klonopin did not include sufficient numbers of subjects aged 65 and over to determine whether they respond differently from younger subjects. Other reported clinical experience has not identified differences in responses between the elderly and younger patients. In general, dose selection for an elderly patient should be cautious, usually starting at the low end of the dosing range, reflecting the greater frequency of decreased hepatic, renal, or cardiac function, and of concomitant disease or other drug therapy. Because clonazepam undergoes hepatic metabolism, it is possible that liver disease will impair clonazepam elimination. Metabolites of Klonopin are excreted by the kidneys; to avoid their excess accumulation, caution should be exercised in the administration of the drug to patients with impaired renal function. Because elderly patients are more likely to have decreased hepatic and/or renal function, care should be taken in dose selection, and It may be useful to assess hepatic and/or renal function at the time of dose selection. Sedating drugs may cause confusion and over-sedation in the elderly; elderly patients generally should be started on low doses of Klonopin and observed closely.


And we noticed that while mom was on it, she was groggy for a couple of hours after getting up in the morning. So, for us, it wasn't something we wanted to continue with. She only took it about a month and she did experience some symptoms after stopping which we attributed to as "withdrawal" even though we tapered off of it gradually.

Thanks for pointing out that it is useful for some folks.
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Re: PSP Symptoms & Diagonsis

Postby eplowman » Fri Sep 19, 2014 12:22 pm

Deb,

I'm glad you posted the additional information about klonopin. Of special interest is the concern about apparent inadequate testing of its safety and efficacy on older people (probably something true of many other Rx meds as well). Especially since people over 60 are probably the largest population segment affected most by the onset of neurological conditions. My late mother had late-onset Huntington's Disease. The docs put her on Klonopin. Her movement symptoms lessened quite a bit; we family members rejoiced at the seeming relief for her. But the mood-related side effects made her miserable all day every day. Her quality of life nose-dived. She tried to avoid taking the med at times, tricking caregivers and nursing home aides into believing she swallowed the pills they gave her. She would confide in me, sometimes in tears, about how awful she felt. So "pressed down," she said. I found myself wondering whether klonopin had really improved her quality of life -- or actually worsened it (when looking at the question from HER perspective)!

Everyone is different. Seldom does a one-size-fits-all solution work in many spheres of life, including medicine. The neuro who diagnosed my late wife Rose explained to us at the time that PSP was not only incurable but also untreatable, and the risk of side effects from =any= drug on her nervous system were so great and so uncertain that he would not prescribe any meds. He referred us to a movement disorder specialist in the practice who would keep tabs on her and help US to make HER life as best it could be.

To this day, I believe that knowledgeable, loving, compassionate, and faithful care-giving is the very best treatment a PSP patient can receive.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: PSP Symptoms & Diagonsis

Postby JoB » Sat Sep 20, 2014 10:30 am

"I believe that knowledgeable, loving, compassionate, and faithful care-giving is the very best treatment a PSP patient can receive"

Amen,and, Ed, many thanks.
Joe Blanc
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Re: PSP Symptoms & Diagonsis

Postby NIyer » Tue Sep 23, 2014 10:10 am

Thanks all for the useful information and encouragement. My mother's left hand has become very rigid and she feels pain on the wrist area and find it difficult to open her fists. The neuro has suggested to try botox injections which he thinks might help relax the muscles. I understand the effect of botox are temporary and needs to be given at least once in 2-3 months. Has anybody found botox useful and have anybody tried any other alternative treatment to ease the rigidity of muscles? Appreciate your views

Thanks
NI
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Re: PSP Symptoms & Diagonsis

Postby myownwoman » Tue Sep 23, 2014 1:09 pm

Have you tried Massaging her arms and other extremities? Phil's caregivers do this once each shift and it seems to have helped. We also put rolled-up soft socks in each of his hands to keep his thumbs from pressing into his hands. All this seem to help keep him from getting too rigid.
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Re: PSP Symptoms & Diagonsis

Postby boxcar9 » Tue Sep 23, 2014 1:18 pm

:)

BOTOX:

Keep in mind that it is proven to help with the muscles and not the joints.

I heartily recommend trying the botox.


Here are some links:

http://agn.client.shareholder.com/relea ... eID=450686

http://www.botoxmedical.com/spasticity/


OUR EXPERIENCE:


Mom first had it in June 2014--though a low dose for the first time (and it wasn't enough).

She just had botox last week for the second time--a higher dose.

She is already starting to move her arm again on her own--though quite limited as she also has apraxia.

The first time we had to "wait" for insurance approval, but she's got good insurance on top of the medicare, so it didn't take long--maybe 5 days. We spent longer than that waiting for the appt.

The main reason we went with that option is that the stiffness is painful--imagine if you had your fist clenched 24hrs a day, eventually that muscle pressure radiates up from your hand and into your shoulder & neck area.

Also, Mom's curving & clenching resulted in a rather nasty pressure sore on her thumb at the first knuckle. It started as a blister in July & graduated to a full blown open oozing pressure sore by August. At her recent hospital stay, the staff applied a "bandage" called Polymem with nothing else on it. That stuff is a miracle! Within 3 days it looked better already! That said, when we ran out of the supply the hospital gave us, I found a specialty pharmacy & had my husband pick up a box. FIFTEEN 4 X 4 sheets cost $100. Anyway, we would have rather avoided the pressure sore at all costs!

ALTERNATIVES:


The things we were doing prior to the botox (which weren't totally effective) included
--using a resting geriatric hand/wrist brace ($100)
--ice packs
--heat packs
--gentle massage (using a massage lotion)
--Badger brand muscle rub
--arnica gel (which helps greatly with swelling and healing bruises)(I never noticed it working for me personally)
--Topricin Anti-inflammatory Pain Relief Cream

(My personal testimonial for Topricin: I used it on myself for painful frozen shoulder. I was desperate & didn't have health insurance at the time. It's non-greasy, doesn't smell and doesn't generate heat. I found relief within 20min. So for me it was worth the price. $25 a jar. I wouldn't care if it had skunk urine or some other equally foul ingredient in it--my shoulder hurt so bad I was afraid to go to out in public for fear of bumping into something/someone. Yes, it was that bad.)

OTHER:
We are also avoiding using typical OTC pain killers like tylenol and ibuprofen, etc. Our dr said no more than 2-3 tylenol per day and we could alternate with ibuprofen, but to keep it limited to a small dose per day. And traditional prescription anti-inflammatory meds and muscle relaxants are pretty much out of the question. Now, if and when, hospice comes into the picture, that is probably a different story.

We are currently trying to battle muscle spasms of the rib cage that Mom is perfectly miserable with.

Whatever you decide, stay alert for the tiny miracles and be grateful for them.


(for me it was the other day she stated to me with great difficulty, "I want a cup of coffee" and "you need to color your hair". Those 2 sentences were BLISS for me.)

Peace, Deb
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Re: PSP Symptoms & Diagonsis

Postby Robin » Tue Sep 23, 2014 10:43 pm

Botox was very helpful in my father's legs. Our local group members have tried it in the neck, hands, and in the jaw for treatment of drooling. Some have found botox helpful. Others have not. Some found the first few go-rounds with botox helpful, and then the benefit went away. My lay opinion: the risks seem quite low (except for treatment of drooling, where the risks are slightly higher) and, if done by an experienced neurologist, botox can be very helpful.
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Re: PSP Symptoms & Diagonsis

Postby NIyer » Tue Nov 04, 2014 2:37 am

Hi All

Its been more than a month the neuro gave my mother the initial shot of botox and dysport on hand and back of the neck. Honestly have not seen any significant impovements in her gait and balance. For her pain in her left fist we consulted an Ortho who beleives the pain is due to the fracture she had in her fingers ealier this year and also due to existing Osteoporosis condition. Generally after how many shots of botox would you see improvements in the condition? Also could could somebody share experiences if any with PSP+Osteoporosis condition?

Thanks
NI
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Re: PSP Symptoms & Diagonsis

Postby Robin » Tue Nov 04, 2014 5:19 pm

I think if one is going to show improvement with botox, it's on the first shot. But that's a good question for the neurologist.
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Re: PSP Symptoms & Diagonsis

Postby NIyer » Sat Jan 03, 2015 12:55 am

Hi All

My mother's gait and balance have not improved much and so the neuro has advised to increase the dose of Madopar HBS( 125 mg) from 2 to 3 times a day. Would anybody able to share in their experience if they found Madopa useful in improving the condition ? I know Sinemet is also been used for PSP condition so anyone knows if Sinemet would work better compared to Madopar HBS?

Thanks
NI
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