Advice for Advanced PD

[EmsXen33]

My mom and I both have Parkinsons. I was diagnosed at age 48 (I'm now 58); she was diagnosed at age 82 (she's now 87). We present with very different symptoms. I mostly have rigidity, bradykinesia, and internal tremor, and I am highly responsive to medication and have wicked dyskinesia.

Her PD affects only her legs -- she has loss of balance, freezing of gait, and very shaky legs. She doesn't feel like the medication does anything and she has no dyskinesia. I am trying to help her but much of what I've learned about managing my symptoms over the past ten years does not apply to her. So I'm wondering if any of you have any advice.

She has only ever been on Carbidopa-Levodopa Extended Release and is now up to five per day. Her balance has gotten significantly worse lately to the point where she cannot stand or walk even a few steps unaided. In my research, I have learned that C-L does not usually alleviate the kind of symptoms she has, yet her neurologist just keeps recommending increased dosages as my mom's symptoms worsen. I'm wondering if maybe she's on TOO much C-L and that may be contributing to the severity of her symptoms.

I know she is at an advanced age and what she is experiencing may simply be the advanced stages of PD, but her cognition is strong and she was an active woman up until a couple of years ago, and if there is anything out there therapeutically that may help her, she definitely would want to try it. Otherwise, she is facing a transition to a nursing home. Her neurologist is unhelpful.

Does anyone have any experience with this kind of rapid loss of ability to walk or have an opinion on her dose of five C-L ER per day when she says it has no effect?

[park_bear]

Unfortunately it is typical for neurologists to keep on pushing the C/L, even when it is not helping. At five doses per day, if it were going to help, it should be doing something rather than nothing.

One unrecognized adverse effect of excess levodopa is levodopa-induced peak dose dystonia. The cases that have been described elsewhere on this site have been pretty obvious, but in my case I'm okay sitting, but when I try to walk my affected leg is stiff and unwalkable. For this reason I have become unable to take a full dose of 25/100 C/L ER. I take four partial doses daily. More on this issue here: healthunlocked.com/cure-par...

I believe it is worth considering disease modifying interventions. What has helped me:

• High-dose thiamine. Dosing instructions and other information at the link. Allow four months for full effect: b1parkinsons.org/

• Cinnamon. Allow two months for full effect. My report healthunlocked.com/cure-par...

I suggest implementing the thiamine and the cinnamon one at a time and see how one works before proceeding with the other.

• Qigong. My story here: healthunlocked.com/cure-par...

[ShakingInMyBoots1 in reply to park_bear]

yes! Levadopa induced dystonia is so real and literally no one talks about it. Thanks for the paper

[EmsXen33 in reply to park_bear]

Thanks Park Bear, your responses are always so helpful (and kind). I have already incorporated your cinnamon and Qigong protocols into my own treatment, and I will share them with my mom. (I tried B1 per Daphne's book but it was difficult to determine whether it was helping because I was trying so many supplements and med changes at the same time.)

[Juliegrace]

I agree that the higher dose could be causing or exacerbating her symptoms. My mother and I also both have PD and present very differently so I understand the difficulty of trying to help with her situation. My mom won’t consider anything other than what her doctor tells her, luckily now she has a really good MDS. I would suggest that if you can get her in to see a new neurologist that might be helpful. If her cognition is good, would she be willing to try taking c/l IR? Or rytary or crexont (if she can afford it)? The reason for trying the immediate release form of c/l would be to see if it is doing anything for her or not. I believe it would be easier to gauge than it is with ER. Assuming she is able to tolerate the change, which is where a new neurologist would, hopefully, be able to help.

[00Mark in reply to Juliegrace]

I wonder whether DBS would help your mother? I know some people who have benefitted from it.parkinsons.org.uk/informati...

[Juliegrace in reply to 00Mark]

I think there’s an age limit on DBS.

[Lionore in reply to Juliegrace]

Do you know what the age limit is? Thanks.

[Juliegrace in reply to Lionore]

No, I just recall reading it somewhere. In the 70s I think.

[asparagu in reply to Juliegrace]

My physician friend was rejected for DBS at age 80! This is due to risks associated with the invasive DBS procedure i.e. infection, cognitive decline due to anesthesia,...

I have been a nutritionist in private practice for 34 years. After being diagnosed with Parkinson's I focused on exhausting all the dietary options first before trying medication treatments. Fifteen years into it, I am confident that a combination of regular high intensity exercise 5 days a week along with strict plant based diet (NOT MEDITERRANEAN) and the right dose of ER version of Carbidopa/ Levodopa helped me mitigate my motor symptoms (severe tremors that were cut in half after elimination of BBQ beef /chicken), and dystonia eliminated with the right shoe sole!

No botox, no extra dose of C/L, no unnecessary life-long drug with painful side-effects! I'd try a plant based diet for your Mom with minimal animal protein, some seafood/ wild fish. Nutrition is an exact science not a fad ! Best of luck

[EmsXen33 in reply to asparagu]

Thanks asparagu, that's good advice! I'm glad it's working so well for you.

[EmsXen33 in reply to Juliegrace]

I agree with you, Juliegrace. She should try different formulations of the meds. She lives in a large metropolitan area in the U.S. where there are plenty of excellent MDSs who specialize in PD, but they are all either not taking new patients or have a waiting list of at least a year. I've heard good things about Synapticure, a virtual PD medical practice designed for people who have trouble accessing quality care, so she's going to try that.

[Allypally49]

My WWP is similar to your mum.

Uses a 3 wheeled Delta in the house and furniture hops.

Has to use a wheelchair chair out of the house.

I noted at the physiotherapist a few weeks ago that when she asked my wife to walk using the Delta, using the space in a large room and she walked a little bit better.

I has to say, that's not how she normally walks.

My analysis was that she has to get from A to B and that the target B becomes a problem but with the physiotherapist there was no B as the challenge.

I related my thoughts to her MD Doctor but was, as usual given the silent no comment treatment.

My wife, with the aid of a rail at both sides of the stairs can manage, holding on to the stair rails and walking up and down the stairs, same reply when mentioned to MD.

She has high anxiety of the fear of following and is on awaiting list to see a neuro psychologist and a Psychiatrist.

Hopefully something can be done to help the freezing in walking etc.

[park_bear in reply to Allypally49]

>using the space in a large room and she walked a little bit better

I walk much better outside when I can open up my stride and take large steps and get a rhythm going

[Allypally49 in reply to park_bear]

Wife has been told by physiotherapistand myself, to imagine you're walking like John Cleese doing his silly walk, but she's got it in her brain that she'd look stupid doing so but even although I've said it's not as silly as the shuffles you do, she won't work on that theory.

Also try to get her to imagine she's walking up the stairs or moving the top of her legs and the rest will follow but she's doesn't seem to have the mental ability to do so.

[park_bear in reply to Allypally49]

The mantra I tell myself is "walking correctly is more important than walking quickly". Especially when I just start out my exercise walk. Once I've got the correct part down I can pick up the pace.

I have noticed when I get into rock a whole different set of neurons takes over - I immediately feel much more able and energized. Likewise, I am competent on ladders, even when not so much on flat ground. This effect is not easily created simply with the imagination.

[EmsXen33 in reply to Allypally49]

Allypally49, that describes my mom's condition exactly! Please let me know if you find anything that helps.

[healthabc]

What a coincidence- I was also dx'd 10 yrs ago, at the age of 47, and my mom as well. She is now 94, living alone still...but its quite tentative at this point. We took different paths- different meds, different neurologists, etc...

[EmsXen33 in reply to healthabc]

Wow, 94 and living alone with PD - she's a tough woman! My mom lives with her 90yo husband a few hours away from me but they have great neighbors who check in on them all the time, grocery shop for them, etc. Surrounded by so much neighborly generosity, she doesn't want to move to a nursing home, and I don't blame her. I hate to see my mom losing her ambulation, as I'm sure you do too.

[Psalmody]

I think there has been some good suggestions above others.

Have you had a physiotherapist come and work with your with walking?

my mum at 98 lost the ability to walk for two months but we had a physiotherapist come twice a week and got her walking again. She didn’t have PD but it was an amazing feat to get a 98 year-old Mobile again. You would need to do it at a time her meds were working. Otherwise it’s hard to have the strength and balance.

Certainly was trying everything rather than going into a nursing home if possible

All the best

[EmsXen33 in reply to Psalmody]

Yes, she had a physical therapist coming to her house for awhile last year. Then the physical therapist brought Covid, and both my mom and her 90yo husband got it (for the first time) and recovered (after a stay in the hospital and rehab for my step-dad). The physical therapist had been working in close contact with many clients and did not wear a mask. Needless to say, my mom is not ready for another physical therapist for the foreseeable future. Now that you have me thinking about it, it could have been the Covid virus that triggered the sudden decline in my mom's symptoms.

[Waxbeans]

I continue to wonder why I do not see clear signs of my CL. I have no clear on an off periods. I fight taking the medicine so often with no perceived benefit. The wife thinks I am less stiff when I try to reduce my doseage

However if I am the reduced stiffness is so subtle I still wonder about my need CL.

My specific symptoms led to possible NPH, Normal Pressure Hydrocephalus and my Neuro Dic recommended a brain MRI which reflected a chance of NPH. I completed the spinal fluid drain that was supposed to relieve excess spinal fluid in the brain. The test seemed tho thorough in the hospital as they gradually drained a specific amount of SF hourly for three days combined with testing to check for improvement in symptoms. The staff did not see enough improvement to justify Shunt surgery even though I felt a little better and I felt walked a little better. They said the pass rate was fairly low for the Shunt endorsement. I felt they were clear that the surgery was a lot so they wanted a clear sign of improvement. So I’m back toPD.

[EmsXen33 in reply to Waxbeans]

That sounds so stressful; I hope your condition and your medication dose stabilizes.

[rhyspeace12]

does she have peripheral neuropathy in addition to her other problems? It really affects one's balance.

[EmsXen33 in reply to rhyspeace12]

She does have peripheral neuropathy, specifically a lot of pain in her feet. Have you found anything to alleviate that?

[asparagu]

I already answered above regarding your mother with balance issues. I'd laser focus on her diet (& yours) and eliminate all beef & have mostly plants (veggies & fruits). Read above for more details