My parents live in India. I will be visiting them soon (in a few days) due to an emergency. My father was very recently diagnosed with PSP, but has been getting treated for PD for three years. His symptoms are muscle weakness and stiffness, falls, constipation, slight speech slurring and coughing. The disease has taken a toll on his high spirits, but he is otherwise fine wrt mental health. He also doesn’t have tremors or any noticable eye movement issues.
Are there any supplements or aid-devices that you have found helpful? They don’t have high quality supplements and devices in India. I would like to take things to them from here. He uses a walking stick & walker. He has been taking multivitamins, vitamin D, and CoQ10 and Green tea. Thanks in advance for your help.
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Mary82
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The problem is that as the illness develops different aids are needed.
Sorry if this post comes over as opinionated or brusque - I'm going for brevity - I should be doing other things right now.
In no particular order.
Lactulose for the constipation - but it only works if he keeps his fluid intake high.
Save your money on the CQ10. We used it for years with no clear signs of it helping because a small scale study showed it might be helpful in very high doses. That pilot study led to a larger scale study which showed no benefit at all. PSP research has abandoned it as being of any use.
If he enjoys green tea then he should continue to drink it! I love it. Tea drinking is my hobby. (yes I am that sad) and I follow what happens in the industry. Green tea was pushed as a superfood to get the market share up. (Sorry to say it - but true) Yes the antioxidants are good for you - but they are highly unlikely to help with PSP unless part of a much wider range change in diet. (See the Clever Guts Diet which is based on proper research).
At some point he will need a good wheelchair. Don't go for a cheap one. like we did, they are harder to push and less comfortable. This is the one often supplied by good Social Services.
It is very good indeed. It also has solid tyres that won't puncture and which are easier to push. And it takes the knocks a cheaper one cannot.
You will need a good wheelchair memory foam cushion too - They help to prevent sores.
A zimmer frame or walker is good in the early stages, but people fall backwards and so they become dangerous in time.
Decent incontinence pads?
A waterproof sheet to keep the mattress dry - there are very good ones now which are not plasticky and sweaty. And a waterproof absorbent bed pad to catch urine too. It goes asbove above the waterproof sheet and beneath the normal bottom sheet.
Thank you for the detailed post! The mattress pad is a great suggestion. Sending things to India is not that easy due to customs. They hold shipments until someone shows up in person to sign. Technology progresses but bureaucracy hinders.
It must be hard for you to be so far away and wanting to help. I'm trying to think what was useful to us that can be transported.
If he has trouble swallowing, Thick-it powder for making liquids easier to get down. Grab bars to be installed where needed? I found them invaluable, both ones that were screwed to the walls and on door and window frames and removable ones for the bath that attach with suction cups. There are also various types of folding benches for the bath that may be relatively easy to transport.
Miralax powder for constipation. Or dulcolax tablets. Constipation can become an awful problem, life-threatening, even. It's good to avoid it, if possible, and to have treatments on hand.
Bed pads, washable and disposable ones, were vital for me. I second Kevin's suggestion. You don't mention incontinence, but that was the single worst symptom to manage in my experience. Incontinence pants are expensive everywhere, but were necessary. My guy couldn't manage any of the catheter or other urine collection systems. Many people had better success.
I'm not at all disagreeing with Kevin, but our neurologist was a specialist in PSP, and, while disappointed in the results of the CoQ10 study he mentioned, which she was involved in, she still believed that there was benefit in it, just not a dramatic enough one to break the statistical barrier. I suspect, like everything else with the disease, it depends on the individual. That said, despite the large doses he regularly took, my sweetheart's progression was rapid once he began to slide. For us I think the benefit was in the hope it offered, since no prescriptions had any good effect. Except for the cost, which is not insignificant, it does no harm.
I wish you good travels and hope you find your father and family as well as may be.
Thank you for your kind words Sarah. There is no end to the guilt. I have always been a Daddy’s girl.
Thick-it is such a clever solution! I had never heard about it, and will definitely be taking one. He doesn’t have inconsistencies/leaking when he is awake, has mostly been in his sleep. But he does wake up 2-3 times at night to go to the bathroom. He also doesn’t have vision problems, which seems to be the primary symptom for most. May be he is not realizing it.
I am definitely one for hanging onto hope! He does take CoQ19 daily but in lower doses (300mg). What dosage did you do?
We are doing 1200 mg a day and we also use DHA, which is important for brain development for children, but research has shown mitt to be of some help in delaying the progression of Alzheimer's because it helps in the formation of new neural networks. If it helps there, perhaps it will help with PSP. We use 1200 mg. Hope is so very important.
I would recommend a roho (4” deep) cushion vs memory foam and the Orion 2 tilt wheelchair. Eventually moving him will have to be done with a lift (time consuming a d difficult) and this wheelchair/cushion combo will give you the most comfort. The cushion prevents sores and the wheelchair reclines fully for sleeping.
If it is difficult to get into India, start the process sooner not later. Not sure where you live but we picked up a used one in excellent condition that was sized for her. You will need a good wheelchair.
Sorry this is so direct but I am sick today and wanted to give some input as we went through 3 wheelchairs (stages of her disease). Feel free to as questions. Erna
Thank you for taking time to reply! Hope you feel better soon! I’ll keep this in mind about wheelchair. He refuses to be put in one. Thankfully on most days, he is able to move around on his own. Though the amount of movement is fast declining, he says he gets tired. He used to walk around the block for 20 minutes a few months ago. Now it is more around 5 minutes.
Thank you all for your replies! One more question - do any of you give/take supplements for vision impairment - like preservision? My dad doesn’t have vision problems yet but I wanted to see if the supplements help (even marginally)
Lots of good suggestions already. Along with the incontinence pads and mattress protectors we used urine bottles for when hubby wasn't able to aim accurately any more and when it became too difficult to get him up to the bathroom. Much later we started using convene catheters which were an absolute godsend so we could both sleep through the night without any mishaps, and also allowed us to take him out for excursions.
When it became more difficult for him to eat, we supplemented the calorie intake with thickened protein shakes, which we flavoured with various things to keep things interesting. So maybe think about protein powder or similar. Unflavoured or vanilla is best so you can add other flavours yourself.
A shower chair/transport chair/toileting chair combo was also useful. And you may need to look into bathroom modifications while you're visiting. We converted our bathroom shower into a wet room type with low glass doors and that made a big difference.
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Good luck.
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