Need giudance and right medications for psp

[Samyak25]

Hi everyone i am new to blogging and to this group. Life has changed a lot since 3 years as my father had been diagnosed with psp at very early age of 57 after many misdiagnoses such as ftd or dementia. He is rught handed but uses his lefy hamd for daily works and now has problem walking with loss of balance , difficulty speaking clearly and drinking liquids , he is not able to do calculations in business as he used to do before . He was a very fit and intelligent but he is becoming totally oppsoite now. He has difficulty in eye movement also sometimes. We are only giving him syndopanplus ,pacitame and floucetine as prescribed by doctor and also started pranic healing for him pls giude as to which medications in ayurveda ao any other to help it , currently we have a physiotherapist he comes daily to streatch his body , pls giude me more my mother remians very tensed all the time .Need something that can atleast hault this desiese in very stress cant afford to loose my father to this desiese i wantbto fight it

[Dadshelper]

Welcome to the site. It's very unfortunate you had to find it but it's a great resource for anyone dealing with these diseases, be you patient or caregiver. PSP is a progressive disease and to date there is no cure or medicine to stop it. It presents a wide array of symptoms that may or may not manifest during the progression. Most medicines that end up being used/tried are to manage the symptom(s) at present and will change as time goes on. The physiotherapist is a good thing since most people have stated exercise helps in keeping the body strong and balance longer.

For drinking/swallowing issues it may be time to thicken the liquids, there are several brands of thickeners depending on where in world you reside, talk to his doctor.

As for the stress, well... there's going to be ok days and bad days, you will just have to deal with them best you can. Definitely bringing in outside help will take some of the load off the family, especially as things progress. Remember that this is a neurological disease and sometimes your father may say or do things he normally wouldn't, it's not him, it's the disease.

Ron

[Samyak25 in reply to Dadshelper]

Yes my i explain that to ky mother but sometimes she gets angry and scolds him she does bot intend to but she also gets irritated coz she has to make him bath and everything. We are always sressed and sad that why cant we cure or atleast stop the progression

[drganeshnarayanan]

Hello Samyak welcome to the community. Kindly mention where you are located so that we can guide you better. It’s unfortunate that your father has been diagnosed with this dreadful condition so early and I totally understand how hard it is for you and your family to adjust with this. First of all I hope he is treated under a proper neurologist and their team. As you might have already known, this condition cannot be cured completely as of now. All we can do is to improve the quality of his life by following proper guidance from health care providers.

The drugs you have mentioned are usually prescribed for people with psp and they should be given to your father according to the doctor who treats him.

Coming to alternative medicines, I’m an Ayurvedic doctor by profession located in India. My mother who is also an Ayurvedic doctor was diagnosed with PSP since 3 years. I’ve been trying different medicines and treatments in Ayurveda and I’m sorry to say that none of them seem to have much effect in slowing down the progression of my mothers condition. Do note that my mother has a very fast progressing type of psp which was diagnosed at an early age similar to your father. I’ve found that external treatments like ‘Udwarthana’ and ‘Dhanyamla dhara’ might have helped her a little during her early stages but eventually she got very weak. I’m still continuing these treatments for her. Internally I’m giving her a combination of Ashwagandha , brahmi and chandanadi which are available in several forms. It would be better for you to consult with an Ayurvedic doctor who can guide you better.

More than medicines I found staying active is one way to fight this condition. Make sure your father does proper exercise training from a physiotherapist and make him do it everyday. Do not skip it no matter what. Always boost him mentally and do things which make him happy. Tell his loved ones to visit him often and instead of making him sorry for his condition tell them to make him feel as a family. Hope this helps a little.

Thank you

[Almor957 in reply to drganeshnarayanan]

Querido amigo,

Sendo um médico ayurvédico, já tentou dar-lhe óleo de cannabis?

Um abraço,

[Samyak25 in reply to drganeshnarayanan]

I live in new delhi it would be great help if you could guide us through this in ayurvedic , i have heard somehwgere in gujarat a doctor mukesh paneri says he cures parkisnon by ayurveda and many people hve been cured there is a website and everything and i toked to him over fone he said that psp also can be stopped . Dont knoe whether what he said is true but certainly if people are also appreciataiting there must be something , i also heard of stem cell , will it help?

[drganeshnarayanan in reply to Samyak25]

Hello Samyak,

Glad to know that you live in New Delhi. I’m located in Kerala. I will take that information with a pinch of salt. I’m in touch with my professors and colleagues and as far as I know there’s no complete cure for Parkinsonism or let alone PSP in Ayurveda. Typical Parkinsonism can be managed with Ayurveda but not completely cured. It also varies from person to person.In case of PSP it’s more difficult. So if you wish to take your father for Ayurvedic treatment I will suggest you to take him to any Government Ayurveda colleges spread across the country. You can also take opinions from several doctors. Good luck

Thank you

[Seeker_12 in reply to drganeshnarayanan]

Hi drganeshnarayanan,

Just curious. Does Macuna help at all in PSP?

[jp_sharma in reply to Samyak25]

My father had taken the guidance and medicine from dr. Mukesh paneri for almost six month but did not get any improvement.He also went for almost 60 days treatment in a aayurvedic treatment centre near manglore-Vedyar ayurveda(videos available at youtube)but this also didn't work much.all I can say that no treatment is available presently in any form of treatment either it is ayurveda or in modern allopathy .Best wishes.

[Samyak25 in reply to jp_sharma]

Thanku so much you had puraued him

For psp specifically?

And have you tries for stem cell therapy that might help

[jp_sharma in reply to Samyak25]

Yes for PSP

As far as I understand,Stem cell therapy works good in Parkinson's disease where progress of disease is very slow.

I met with many doctors to asked about stem cell and they denied in the case of PSP patients bc its very complicated for them.

Talk to your doctor for this therapy may be this works in case of your father.best wishes

[LuisRodicioRodicio]

Hi Samyak25!

I'm sorry PSP has entered your family.

In general, the three persistent symptoms along the "PSP trip" are: problems in movements, depression and insomnia, and it is almost constant to use intensive physical or exercise programs to curb as much as possible the symptoms of Bradykinesia, rigidity,, eye movements, etc. as well as specific medications to alleviate depression and insomnia.

Some caregivers include 3 to 6 mg of CBD Oil via subling, usually before lunch but not necessarily, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.

If you are interested on CBD Oil see:

healthunlocked.com/psp/post...

The PSP manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

During the 6.5 years in which we lived with PSP I have been collecting my own experiences and that of other members of the chat to offer this notes as a suggestion to patients and caregivers.

Wishing the best for you and your family and if the document with our experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail through this chat.

Courage and luck.

Luis

[Samyak25]

Thanks luis for sharing this piece of information i wanted the link for it coz in the chat the link is incomplete and what notes please share with me , i would like to knoe also that is stem cell infusion helpful in slowing or stopping psp

[PSomani]

Hi. Sad that you need to join this site. However, the people here are amazing and can help out most of the times better than doctors. Unfortunately , treatment of PSP in india is in a very early stage.

I am based in delhi ncr and my mom has this ailment for about 10 years now.

Replies from Ron, Luis, and Dr Ganesh aptly cover the points. Let me add a few more

1. Ensure muscles do not atrophy else walking and sitting gets impacted very soon. You may need protein supplements basis his weight etc.

2. These patients tend to choke so ensure food is given accordingly

3. Physically and mentally - they need to active which may be able to pull a few years in a better condition hopefully. Inactivity is like adding fuel to this ailment

4. Ensure no fractures - else persons activity reduces and the disease catches up

5. Get the eyes checked for cataracts now only - there are Neuro-ophthalmologists nowadays.

6. Do ensure financial support since insurance does not cover a lot of aspects

7. Get blood tests etc done regularly and show them to a doctor

8. Also ensure that paperwork of operating bank accounts by someone else in the family is taken care of else these become issues later

9. Start looking for help - trained nurses or attendants - tough to get good ones in delhi

10. Last but not the least - the care givers need to be strong and take care of themselves first

Please feel free to connect separately for any delhi specific queries etc.

All the best

Anshuman

[Seeker_12]

Hi

There are several variants of PSP and the disease affects each patient differently and one or more of the symptoms remain predominant. Though there is no cure, the disease could be managed with a good support system and lots of love. Pranayama has shown some positive changes to my sister’s speech and also nasal breathing as she keeps her mouth open involuntarily many a times. She also has severe rigidity we are trying physiotherapy and mobility exercises alongwith oil massage on a daily basis, there is some decrease in rigidity these days, but have to wait to see how long these improvements sustain.