Alternative treatments for PSP

[harrish14]

My wife has PSP, and since we live in NJ she is being treated by Dr. Golbe at Robert Wood Johnson University Hospital. Although there is no known medication she is currently taking carbiodopa/levodopa ( Siminet).  Does anyone who has PSP or is a caretaker for a loved one with PSP know of any alternative treatments or dietary/ nutritional supplements that have provided help or relief from any of the symptoms of PSP. I would appreciate hearing from you.

[Jotro]

I use a gym almost every day and my PSP has reversed direction.  

[abirke in reply to Jotro]

What is reversed direction?

[Jotro in reply to abirke]

I went from from bed to wheelchair to walker to feet. I take a fifteen minute walk almost every day by myself. I go to a rehab gym fives times a week and on Friday I used a leg press (seated squat machine) set at 350 pounds a total of 24 times. I am hardly dizzy anymore when I get up in the morning but I still have to avoid sharp turns. My double vision when I look hard to the right is still double vertically unfortunately. My gait is almost perfect. When I lay down to sleep the dizziness is greatly reduced. My wife does not worry much anymore when I do stairs to the basement (we have a single story rancher). But the fear about the future is still there and I have to fight it for I know I have to face a delayed onset of end stage. I was dignosed in September of last year after three years of puzzling symptoms that were very subtle but progressed. My wife is my lover and best friend and a retired nurse so I will have to depend on her more and more as the years progress but we both face the future with as a team. We both tease each other about heaven and I have told her I will prepare a crystal home for her and I and wait for her arrival with bated breath.

[psplife in reply to Jotro]

Jotro,

Your situation sounds so much like my husband (68). He was diagnosed with PD like symptoms since 2012 but last November 2015 we received his new diagnoses  which was PSP. He does walk independently but he has been falling more and more. So far we have been lucky that there has not been any broken bones but he has had some bruises and cuts. His dizziness reduces when he is laying down and we have most of our conversations while he is laying down because he is able to think and speak clearer when in that position--very strange! He is only taking a STATIN, zoloft (for sleep at night), gabapentin (for his leg pain) and clonazepam (very severe leg pain days at night), hydroclorothiazide for ankles. Then he takes the usual vitamins--C, D, FishOil, Tumeric, etc. He tries to stay active but that leg pain is just eating his lunch. I am curious, what meds are you on? My husband has a prescription for PT and we hope to start on that next week. Thanks,

NSH

[harrish14 in reply to psplife]

Thanks for your reply. My wife is currently taking carbiodopa-levodopa 25mg/100mg, 3 tablets 4 times/day (total 12 tablets), and Dr.Golbe is gradually increasing it to 4 tablets 4 times per day. My wife is also taking Citalopram HBR 40mg. Don't know if she really needs it but it is an anti depressant. She is also taking an over the counter special formulation of CoQ10 called Liquisorb. 300mg/day.  

[sammy90210 in reply to psplife]

Hi, my dad used to take Sinemet and it gave him terrible leg spasms, specially in the evening - then his nuero stopped it but he turned completely vegetative - this went on for 2 months - his colleague recommended Sinemet 25/100, 1/4 pill 1x day, increasing it to 1/4 twice a day, then 3 times, then 4, over the course of 3 months or so - it returned his power of speech somewhat and eating and drinking too - so for him Sinemet was a life-changer for him - maybe slowly reducing his Sinemet would help?

[Jotro in reply to psplife]

Metformin for diabetes. But I read that it helps for neurological disease. Otherwise, I take no medicine for PSP. Nothing at all.

[Jotro in reply to psplife]

I am not on any meds for PSP. But I take blood thinners for my heart as well as meds for diabetes, high blood pressure, cholesterol, and depression. I am holding my illness at bay with exercise and grit. But it is still there eating away at my brain. I was asked to be in a study at the University of Pennsylvania in June but my family doctor has said that it is better to not do it. It will be a one year study. I could get the placebo. I could get the trial med and it could adversely affect me. He said that at age 70 I should just keep doing what makes me happy. And, when the actual med works, get it at the pharmacy. In the meantime, something else could kill before PSP does. Maybe a truck will hit me.

[Hidden in reply to psplife]

Stop the statin. After my husband did research on the side effects. He stopped taking it and his pains stopped. I encourage you to read more about statins and talk to your doctor. We have talked to many others and when they stopped, their pains did too.

[harrish14 in reply to Jotro]

This is an amazing and unique progress for such a serious illness as PSP. Could you please tell me and anyone else who has read your reply what specifically you did that reversed the symptoms you had. All PSP caregivers and PSP patients would love to know how you did this. Looking forward to hearing from you. 

[Jotro in reply to harrish14]

Just hard resistance trading at a gym. metformin for diabetes which as an aside seems to help neurogic diseases per a medical journal.

[KAS4444 in reply to Jotro]

I'm sorry....I asked when you were diagnosed before I read this. You sound just like my dad as far as time of diagnosis, but you seem to be doing so much better. If only they discover a cure soon.

[abirke]

Get on to Mind0vermonkeys posts....he has been really researching this.....

It's not a drug,  But like Parkinson's, exercise I believe is crucial.  My husband is young and strong and went from being a weight lifter, to using machines at highly reduced weight. but If nothing else it helps him get out and have a focus for awhile.

COQ10 seemed to be moderately  good. Sinemet didn't seem to do much good, so we stopped. Now B cannot swallow any drugs without choking. Most are extended release thus uncrushable to put in his PEG feeding tube.

Goodluck check out that post

AVB

[loustalet]

Sini met is prescribed for Parkinson and therefore to many people with PSP misdiagnosed as Parkinson. that was the case for my wifewho took Sinimet for years with zero result until her neurologist finally recognized that she was suffering of PSP, not Parkinson.

There are no treatments against PSP yet. Period.

We also tried Salsalate under clinical trial in the US. Zero result as well.

I place my hopes now in a treatment based on ultrasound carried out by a scientist names Goetz but directed at Alzheimer. Due to the similarities of Alzheimer, Parkinson and PSP syndroma all related to the formation of neurones aggregates because of a wild protein, it is quite possible that a treatment based on ultrasound working for one of the 3 would work for the others. And since it is not based on ingesting medicines, if it works, it could be implemented relatively quickly worldwide.

I am extremely interested in any work based on the use of ultrasound to fight these illnesses!

[shasha in reply to loustalet]

ME TOO !

[s2718281]

I would recommend Coq10 in Ubiquinol form. I dont mean to advertise any specific brand, but we used Healthy Origins for my father who was diagnosed with PSP-P in 2010. The neurologist we consulted with, was skeptical about it, but I still went ahead with it and it most certainly helped with turning the clock back with my father's symptoms. He was able to partially regain balance while walking and it also helped with his slurring of speech. This improvement was unfortunately not permanent and with the passage of time, all these symptoms eventually returned. We stopped giving it to him when he lost the ability to swallow and it looked like it was not helping him anymore. He passed away a few months ago

Taking the dose in the morning, immediately after breakfast seems to give the best results. I was giving my father a 200mg dose thrice a day. Initially, we were delighted to see the improvement in his condition, but over the course of a few months, the symptoms progressed and the benefits wore off. It's your choice after all, but IMO, anything that turns back the clock is welcome, even if temporary.

[harrish14 in reply to s2718281]

I am sorry about the loss of your father. My wife was taking a special formula of CoQ10 called Liquisorb. It is a specially formulated CoQ10 liquid with the actual CoQ10 particle sizes probably in the nano size for maximum absorption. My wife was taking 300mg/day which is equivalent to 3 mL. She stopped after 2 months because she thought it wasn't helping her, but I encouraged her to start again. I will order it tomorrow (3/28) and it will be delivered the next day. 

[abirke in reply to s2718281]

s27...May I suggest you start taking CoQ10...not for the same reasons of course...but I like it on a general basis as well.....gotta take care of ourselves too

AVB

[s2718281 in reply to abirke]

Thank you abirke !

Earlier, I was the guinea pig for supplements before I gave them to my dad. I wanted to give him Krill oil for additional DHA but did not do so, when I got loose stools after taking it myself. You are right about the Coq10, it's good for us and we need to take it too

[harrish14 in reply to s2718281]

Thank you. My wife is already taking CoQ10, but to be honest I can't tell if it is helping

[s2718281 in reply to harrish14]

Might be a good idea to try different brands. Not all brands are the same. If one form/brand doesnt help, then I would recommend trying another.  I tried 3 different forms of Coq10 before finding the one which had the most effect. I think this boils down to there being no standardization and strict quality control for supplements, like there is for regular medicines. The difference it made to my father was quite significant, albeit temporary

[harrish14 in reply to s2718281]

Thanks for the suggestion. Our neurologist, Dr. Golbe, a specialist in PSP recommended a CoQ10 called Liquisorb. CoQ10 is  generally in liquid form and filled into a soft hell capsule or as the one my wife uses just as a liquid in a bottle. The CoQ10 particles in the liquid suspension are extremely small (nano gram size) for better absorption. I'm still hoping for the best.

[Jotro]

Heavy exercise and far east thinking have got me walking and improved my gait and dizziness problems. I have gone from bed to wheelchair to walking alone outside. Also, a drink with electrolytes and no sugar called ZERO.

[Mnd0vrmnky]

Glutathione, coq10, alpha lipoic acid and vitamin c are the best combo for antioxidants. They work synergistically recycling everything so there are zero free radicals left.  Also look astaxanthin, I take mine with cod liver oil.

Check out ethnomedicine.com they have linked BMAA toxicity to ad, PD, Psp. They are doing trials in ALS patients using serine the amino acid. BMAA and serine are similarly structured. Serine is used in the formation of membranes. 

I'm hearing about Alzheimers ppl using Curcumin to help clear the mind. Good in the morning.

Resveratrol is another. I get a lot of stuff from pureclinica on Amazon. 

Serrapeptaze for pain relief and saliva reduction among other things. 

Baking soda for Uti, diahorrea, raising ph lvls. 

Look into magnesium as well. 

Peace

[KAS4444]

Hi, I live in Southern New Jersey.  My father has PSP and we are taking him at the end of this month to see Dr. Golby. He has a movement disorders neurologist in South Jersey and he recommended Dr. Golby.  My dad's been on Sinemet since his final diagnosis in September 2015 (he was misdiagnosed), although he's had symptoms for a few years. I can't say if the Sinemet is working or not because he hasn't stopped it, yet he's still deteriorating. I've done so much research with regard to other  treatments. I'll tell you what my dad's on. In addition to the Sinemet, he's on the Excelon patch and Namenda XR for cognitive impairment. He's also on Effexor for the depression that comes with the disease.  There have been clinical studies utilizing CoQ10 in Germany and, in fact, his doctor recommended 1,200 mg/day.  You can get CoQ10 over the counter.  I believe the highest mg you can get is 400 mg. I posted a question about the CoQ10 on here, and one person wrote about his dad participating in the Germany trials. We just started it, so the jury's still out. We're giving my dad a lot of B vitamins, which are good for the nervous system. And prayer, prayer, and more prayer! May I ask when your wife was diagnosed? HAs she been under the care of another neurologist besides Dr. Golby?

[harrish14 in reply to KAS4444]

We did go to another neurologist who has treated PSP patients. She is Chinese, but was totally educated here in the U.S.  However, she also practices holistic medicine, and at this point I will try anything (witch doctor, voodo, I don't care as long as it would help). She was very honest by saying there is currently no known treatment/cure for PSP, but her philosophy is to try and slow down the progression by holistic treatment. She feels acupuncture may help (no guarantee), and she does it, but she is pretty far from me (1 1/4 hours drive). She was able to find a very knowledgeable acupuncturist who is much closer to me. We have had three sessions so far, and we will make decisions after about 6 sessions to determine if it helps or to discontinue. I too live in south Jersey in Manchester (exit 89 off the Parkway south). If you would like please feel free to e-mail me and then we can even talk on the phone. My e-mail is [e-mail].    

[jiri_jiri]

Did anyone tried using high doses of CBD oil. I have read few abstracts and conclusions of scientific papers which suggest that CBD could be very beneficial towards slowing down diseases like this.