The Good and Bad

[Dee1980]

Bit of a long post...

My dad has had Parkinsons for several years now, started with a left hand tremor which has progressed to slow movement, some shuffling (though not as bad as some), and stiffness. The neurologist has had him on Pramipexole, Rasagaline, and Kemadrin for the last few years.

Unfortunately, his cognition started to decline in the last few months, more sleeping during the day, waking up at 4am and constantly craving (and eating!) sugary treats. His posture is pretty bad, the hand tremor still there along with jaw tremor. His cognition was so poor he had a dementia diagnosis. This was all exacerbated by a fall from his bike which led to a small brain bleed. He also had issues using the toilet properly.

I'd been looking into Parkinsons for a while, so I did the following in the hope that throwing everything into the mix, something might stick:

VieLight twice a day

Mucuna Pruriens 15% twice a day (we got an organic powder we started off with, but no measurements of that on packet)

Beef liver capsules for B12 and ceruloplasmin (iron regulation)

Rosita Cod Liver Oil for natural vitamin D and retinol

Magnesium slow release tablets

In the last couple of weeks he's gone from being confused about the time, to sleeping at night and very rarely during the day.

He's interested in his appearance, shaving and combing his hair and asking me to trim it. He notices when his clothes are unclean and he had a shower for the first time in too long a while.

He'd communicate in little sounds, now we have whole conversations with him.

He's out and about around the house doing jobs, very active.

His cognition is so improved that I don't even know if he'd get the same dementia diagnosis now.

If I recall correctly, the VieLight supposedly repairs the acetylcholine pathway in Alzheimers. Kemadrin (procyladine) suppresses this particular neurotransmitter for tremour, though it never erradicated it. (I did find a study suggesting Kemadrin might be implicated in Parkinsons dementia)

That's the good side and he's even had days where he felt good enough to go out.

The bad side is, I think he's suddenly aware of his deterioration over the last few months, I know L-dopa can cause depression and it might be causing this.

His posture has got worse. His tremour has got worse to the point of pain. Today he didn't want to go out because he felt dizzy.

I've started him on 100mg of B1, I'm aware that's woefully inadequate, but I'm looking for something to deal with the tremor and posture issues so he feels better about himself.

I'm also posting for anyone who has problems with Lewy Dementia to see the above and see if it helps.

[faridaro]

Your father is so fortunate to have you Dee! Keep us updated on B1 treatment, hope it helps.

[hanifab23]

Please tell me more about the vielight therapy how long he had been using it

I want to purchase it but am very skeptical

they recommend the expensive one

[parkie13 in reply to hanifab23]

You can do a search on health unlocked for vie light. They are couple interesting threads.

[Dee1980 in reply to hanifab23]

I ordered it mid-Feb, so he's been using it for three weeks now. I went for the 810 one.

It's an expensive crutch, it won't cure as far as I know, but if he continues to improve then it gives me time to work out the mechanism behind photobiomodulation and see if I can't get that into his diet/cells/brain. It hasn't helped with his tremours or muscles or posture, he says he's stiff, it might even be making them worse. But cognitively, one of the above I listed has helped a huge amount.

I read about the vielight on a facebook group. If you're interested in IR light therapy mechanisms, there's a blog of the original post:

gotmag.org/iron-toxicity-po...

[hanifab23 in reply to Dee1980]

Thank you so much Dee for responding

Pray that your dad keeps on improving

[parkie13]

Your dad is very lucky to have you. Your persistence is admirable. Sometimes the prescription drug is worse than the so called Cure. I'm sure you did a search for a vie light on healthunlocked, your post mirrors the other caregivers post. Best of luck. Mary

[Juliegrace]

Why hasn't his neurologist prescribed levodopa? I had to look up Kemadrin, which I'd never heard of.

[Dee1980 in reply to Juliegrace]

His neuro has prescribed him Levodopa, but it was one of the meds he always said he didn't want to go on, hence the mucuna pruriens. He still has it as a fall back and we have the meds. It'll be his choice.

I'm just worried that if the mucuna isn't working for the tremor, the L-dopa won't either. I did a thyroid panel for him that showed Hyperthyroidism with antibodies, so he's trying a gluten free diet, something I never thought he'd do with his love of cake and bread.

[ryanJames1]

Mannitol is helpful for preventing leery bodies apparently

[ryanJames1 in reply to ryanJames1]

Lewy bodies

[Eliza-Jane]

I applaud you for the care you are giving your father. I haven't heard of those medications, perhaps if you live in a reasonably populated area you may have a choice of another Neurologist. I have trouble with my posture from time to time. I have a rolled up towel secured by a couple of large elastic bands. I place it along my spine running down from my neck and lie there listening to my back crack. I am sure there are more pleasant sounds around but these sound good to me. I asked a physiotherapist about it and she supported what I was doing. You may have to help your Dad up from the floor, but that is something I judge my fitness level on. I often have to give myself stern words before I heave myself up. It is wonderful to know that your Dad has shown improvement, at least in some areas.

I have been using the Vielight but the jury is still out.

[hanifab23 in reply to Eliza-Jane]

Eliza

Please tell me which model and any improvement

[Eliza-Jane in reply to hanifab23]

I have the Vielight Gamma. I don't know if it is helping or not. My PD is stable and I don't have major issues. I am feeling good today and I haven't used it for 4 days. I am going to go without it for another 4-5 days and see how I am feeling.

[hanifab23 in reply to Eliza-Jane]

please tell me if you still using the vielight I started o use it on April 5th once a day for 20 minutes so far I don't see any benefits

[Eliza-Jane in reply to hanifab23]

I have sent mine back and received 80% of my money back. I think I gained something from the placebo effect, probably more from the 20 min rest each day. Some people find it helps memory etc, but I have a good memory so can't gain anything there. I am currently reading You Are the Placebo by Dr Joe Dispenza. This is an interesting book.