alternative treatments

[jmj0]

I would like all alternative methods for alleviation of symptoms, I see more damage and side effects from prescription drugs and my client will not take them. Specifically things like acupuncture, neuro physical therapy, eye-brain training, homeopathic, natural supplements, neurofeedback, botox. Would like to know which helped and which had no effect.

[timbowPSP]

Hi there jmj0, you are asking a HUGE question, no simple answer. I can only tell you my own experiences, which include acupuncture (great for helping my knees right now) CraniaL Osteopathy (past 2-3 yrs, to keep my body energy balanced and flowing), Homeopathy (has been working steadily in the background for 3 yrs), many Vits and Supplements as diagnosed with kinesiology, Targeted exercise - now 80, I do Pilates classes for core strength, flexibility, balance).

Suggest you investigate, and try different ones that 'resonate' with you. Try dowsing the opps? Even think about mushrooms with healing properties.

Mainly take responsibility for your own health, as we are all different and have to find our own ways.

Ask me more when you're ready! Best wishes, and go well. TimbowPSP (in UK)

[Purrlie in reply to timbowPSP]

For over two years, well before my husband was diagnosed with PSP, he regularly saw a wonderful kinesiologist/sports therapist once, sometimes twice, a week . I am convinced that those treatments relieved his over-all stiffness, he stopped shuffling along and was able to straighten up and walk more confidently and with greater control, and he was just generally able to move more easily when getting in and out of a chair, the car, or bed for example. Hope this is helpful. Purrlie

[timbowPSP in reply to Purrlie]

Good to hear from u Purrlie, and about the Kiesio/Sports for ur husband. I have 4-pages of my own experience and suggestions which may be useful for anyone with PSP, Parkinsons, Alzheimers etc. Happy to send it to ur personal email if you'd like, or there's private chat channel somewhere here, which Ive not used yet. Best TIM

[Lara_2004 in reply to timbowPSP]

Hi timbowPSP I was diagnosed with PSP 12 months ago and still learning about it. My condition has definitely worsened in this time and I find my body is reluctant to move (bradykinesia) and my balance is much worse along with stiffness in fingers which makes it difficult to type and grasp objects.I'd be most grateful if you could mail me the notes on your experience with this horrible disease. email address is [e-mail]

[jmj0 in reply to timbowPSP]

OK great news! She just had a swallow mri and brain. She has all the symptoms. meds just started by neuro ' carbidopa-levodopa (Sinemet). This is a three times a day medication with special instructions around food. Our recommendation will be to try 1 tablet of Sinemet three times a day and observe for any signs of improvement or side effects' So we wait, but do you think ok to start others things with drugs? I will take her to alternative dr. soon as I find one

[timbowPSP in reply to jmj0]

Im not a Doc, and don't know what swallow mri means. Was that msg for me? So go easy on me - just a regular guy with PSP .... please Stay Positive!

[jmj0]

Mri with Barium swallow, to see her throat problems she has experienced, some choking. Then results will go to the speech therapist for further evaluation and therapy next week.

yes positivity! heal the world

❤️✌️☀️

[oilman1]

My wife used CBD cream for aches in her neck and CBD oil (without THC) for anxiety. It seemed to "help" to relieve some of the symptoms. "Help" is about the best you can hope for with this disease.

[Zerachiel]

I cannot comment on alternative treatments but I think it is worth remembering that the disease affects part of the brain, not all of it.There are techniques to get other parts of the brain to help overcome some of the symptoms; shouting, singing, putting on an accent can overcome speech that has become very quiet; giving the person a reason to look somewhere helps to overcome eyelids that won't open.

I read about Parkinson's gate freeze and how you can get someone to stamp on the crack between slabs rather than trying to "will the foot to move" and try to apply the logic wherever I can.

[Lara_2004]

Hi jmj0 I have PSP and have found levodopa unhelpful as have been all prescription drugs. This wretched disease affects me in stiff movement, gait and balance. I have been taking medicinal cannabis for over 12 months and while it hasn't helped in the aforementioned conditions, it has definitely helped in lessening anxiety and increases sleep patterns.I live in Australia. Good luck and best wishes

[BlairWit]

My wife diagnosed with PSP about 30 months ago. Tried all the standard prescription meds. Then we made decision to try Sativex (Medicinal canabis). What a nightmare it became. Hallucinations nearly non stop an in the end - hospitalised. It may not have been the Sativex and may have been coincidental. the up shot was that a knowledgeable neurologist said that the original diagnosis was probably incorrect and Lewy Body Dementia was more likely. Seems that there is a lot of guessing going on and I do realise that most of these terrible diseases are difficult to pin down except by post mortem. Good luck with you research.

[jmj0]

Anyone familiar or tried Phosphatidylcholine or NAD+ infusions?