Dear Moondaughter,

Thank you so much for sharing your experience! Would you be able to tell us the frequency of your light, and how many minutes you use it for each day?

Would you recommend buying a light and just attempting to treat oneself or do you recommend consulting with a doctor first? If so, do you know if Randy Eady does phone consults?

My mom has been really uncomfortable lately and getting little "on time" each day, so we are looking for new things to try (and have exhausted most of our pharmaceutical options).

Thanks again. I always enjoy your posts!

Rainbow,

Are you sure that your mother has few drug options left? What is her drug regimen?

Everyone's different, but at 70 years old and 6 years post-diagnosis there's a good chance that with the right medication that she should have a lot of "on" time.

John

Dear RB676,

Finding grrace throughh all this parkinsonian chaos I find to be a very personal and sometimes solitary journey. I too am also a caregiiver and one seeking healing at once IIts a peculiar position beiing a caregiver...it feels like being a parent in some ways because at times it requires you be with your patient on their terms (most of the time) whilst others when timing is right you can give them guidance.

Necessity is also a great teacher- having been without health insurance for over 16 years I have learned to become very self reliant . And its been a good journey as there have been many talented , loving and generous people that have assisted me throughout my discovery . This is not contradictory to what I started this post with rather the othher side of the same coin (so to speak).

Some of the best advice I have been given is "Do what iis within you".. Also in homeopathy school I was taught that even though I can see what might really help another that never to offer that freely but only if asked....after a decade of giving care to my companion who suffered a stroke I still have to learn these lessons for his path has been fundamentally different than mine as he has taken a more traditional route.....

I have learned that finding ways to activate and encourage my parasympathetic nervous system (meditation, yoga, tai chi,cycling, hiking, chi gong, neuro/emotional complex work, massage ,and yes sinemet too kept to a very mnimum/no agonists ,etc etc )has offered me relief and a direction (in fact necessary )through this thick forest. Infrared therapy is a technology that really supports and accesses this process for me. I also have an infrared heating pad which I love. I just learned that infrarred lights are used in infant care hospital units for prematurely born infants. Infrared frequencies act as a bridge. Awareness and the ability to feel that frequency ....may involve a host of other factors.....amongst them may be drug history...but not necessarily- at least imho because in the healiing business there are rules and then there are no rules...

I would suggest you email Randy.....mmy intranasal unit has two frequencies but I don't know which ones as I can't find info on the net about it. I started wth 12 minutes twice/day and have now doubled that.... Reading the reviews on amazon about the bionase many have found relief for allergies but one person got the opposite effect of a very dry nose. Overall although infrared feels very very gentle there iis a limit to how much exposure is positive and balancing.

Hope this helps you and bless you for the attention , love and care you give to your Mom as yours is not an easy task and can be thankless.

Kind regards,
MD

Thanks, John. My mom takes Sinemet CR (25/100) about six times a day along with 1/4 of a regular Sinemet (10/100). Once or twice a day, she will take a small amount of mucuna instead of regular Sinemet along with the dose of Sinemet CR. Sometimes, if she wakes up early, she has one additional dose. This adds up to around 750-850mg/day of Sinemet.

Sometimes, the doses don't kick in at all and she gets no relief. She might get 3 hours or 4 hours of good time per day, maybe 5 if she is lucky. Her primary symptoms are rigidity, a slow gait, muscle weakness, and fuzzy-headedness (not dementia, she just feels like her thoughts are slower). She does not have a pronounced tremor. She also has some blood pressure fluctuations. She has disabling peak dose dyskinesias that include the sensation of restless legs, the actual jumping and moving of the legs, and acute shortness of breath (which is an uncommon but recognized form of dyskinesia). Slow digestion is a problem, too. She has lost a lot of weight with the PD and is trying hard to gain some back.

Agonists made the restless legs worse. Rytary didn't provide much relief and gave some stomach upset. Amantadine dropped her generally low blood pressure even lower, to the point that the doctor (movement disorder specialist) said she had to stop taking it. Your post prompted me to do some reading. I guess a COMT inhibitor might be the next thing to try?

I would appreciate any thoughts that you may be able to share. I am very grateful for the insights that I gain from this board. Thank you again!

Thanks, Moondaughter, for this kind and insightful message. Your reflections on "being with the patient on their own terms" but "giving guidance when the time is right" in particular resonated with me. I always want to respect my mom's autonomy and the fact that she is my mother, so I don't want to be too pushy. But sometimes when she doesn't have the energy to do research, I try to offer new ideas. Right now we are doing a short "interview" with my mom every night to track her foods, meds, supplements, and sleep and try to detect patterns in how these affect her "on time" and her symptoms. (My husband is good with math and spreadsheets so he helps with the data analysis.) Anyway, no major patterns have emerged yet but if we find a good insight, I'll be sure to share in case it could help someone else.

I admire that you can be a patient and a caregiver and maintain such a good attitude. Being without insurance also sounds challenging and it seems that you have found some very good ways to manage this. I am looking into whether craniosacral therapy might provide my mom some relief, even if just to reduce her stress over this disease.

You have piqued my interest in infrared technologies. It sounds like they may provide some gentle relief. And what the heck, if we could find 3-4 things that provide a little bit of relief, maybe my mom would feel a bit better. I won't stop hoping for that magic bullet, but until it appears I will focus on incremental positive change I am going to read more and email Randy.

Thank you again and best regards,
rainbow

Rainbow,

Your mother should be proud of the help that you're giving her.

When I replied to your earlier post I was hoping that the problems were the result of a simple case of under-medication. But, the fact that you report that she has peak dose dyskinesia makes that less likely. Given this, I would recommend that she should see a neurologist. But, in the meantime there's a few things that you could do.

If I understand your reply correctly, her drug regimen is: 6 times per day of 100mg Sinemet CR plus 25mg Sinemet. There is less bioavailability in the CR pill, you only get about 70-75% of that achieved by the immediate release pill. Taking this into account the levodopa equivalent daily dose is 6 x (75 + 25) = 600mg. (I note that on some doses she is taking an unspecified small amount of macuna instead of the normal Sinemet. This makes compliance harder to achieve.) Unless your mother is a small women this total dose would normally not be considered large, and the obvious step would be to increase the dose. But, in her case this is not directly possible because of the dyskinesia.

The problem that needs to be solved is how to keep levodopa levels above the threshold required to keep her "on", but not so high as to lead to dyskinesia.

The Duodopa pump achieves this by continuously dosing and by being surgically placed near the area of absorption below the stomach, thus getting rid of the uncertainty of the timing of gastric emptying. This gives a smoother level of levodopa which, in turn, allows an increase in dose without causing dyskinesia.

The art of dosing requires that you try to approximate what the Pump does by using normal drugs at the right time and dose. Given the varying times that it takes the levodopa to get into the brain, this is like trying to steer a car where turning the steering wheel doesn't immediately lead to a change of direction and, sometimes has no effect. (Or a more realistic metaphor is that it's like steering a narrow boat on the English canals on a windy day!)

The general strategy that I would adopt is:
- "measure" her Parkinson's as a baseline;
- change one thing at a time, and measure the effectiveness;
- if better, keep the change, if worse, discard and go back to the previous state;
- starting with the first dose of the day, get this right, then go on to the next dose, and so on.

Is the first dose working, in the sense that "on" is achieved, and there's no dyskinesia? If it is, go on to the second dose. If not, try is to see whether you can improve things by taking the dose with water, but at least 1 hour before breakfast. If this doesn't work, and there is:
- dyskinesia, drop the quarter IR Sinemet.
- bradykinesia, increase the IR Sinemet.
- slowness to reach "on", change for the first dose of the day only, one CR for one IR Sinemet.

You mention that your husband is good with math. Get him to do this. If you imagine a graph of dopamine levels during the day, there will be highs sometime after you take a dose, thereafter levels will decline, reaching a low just after the next dose is taken. Unfortunately, you don't have access to blood samples, so you need to construct it from observations. Now, on this graph draw two horizontal lines, one at the level where she goes "on" and the other where dyskinesia starts. Mark in the graph the times of the doses, meals and "on", "off" and dyskinesia times.

You might find this program helpful:

http://www.parkinsonsmeasurement.org...eToSideTap.htm

As a general rule, it's worth looking at exercise and socialization as well, especially if you notice signs of depression. Constipation is both a symptom of PD and a cause of reducing the effectiveness of drugs.

John

Thank you so much John -- this is very helpful and has given me much to think about. The difficulty is that my mom's dyskinesia occurs reliably after each dose -- not a question of if, just a question of severity. It's so reliable that she refers to it as the "worse before better" aka "WBB" period. We know that after she takes a dose, she is going to feel bad for awhile before she feels better.

My mom unfortunately is very small right now. She was small to start with and has lost about 15 pounds, putting her down around 90 lbs, which is far too small. (Women in our family tend to have small bones and fast metabolisms, but everyone agrees that 90 pounds is dangerously underweight. She is working on gaining weight.)

We will test for the baseline of PD and test reaction to the first dose, as you suggest. Very interesting suggestions to add an IR Sinemet to the CR at the beginning of the day (as she does tend to have a hard time getting the first dose to "kick in") and to eliminate the 1/4 tab IR to try to reduce dyskinesia. We will also try the graphing exercise that you suggest and see if it yields any insights.

Good points on exercise. She gets outside to walk for 10-15 minutes each day but should probably be doing more. She finds it hard to schedule social plans because she never knows when she will be feeling "on." The isolation isn't helping anything.

Thank you again for your kind guidance, and best wishes.

Rainbow,

Just to clarify a couple of things:
- if the time to "on" on the first dose is slow, I suggest replacing a IR with a CR, not as you write "to add an IR Sinemet to the CR at the beginning of the day". The logic being that overnight levodopa levels usually fall to a minimum. For me, this is not the case: I appear to still have some natural dopamine production going on, so I wake up feeling good and there is little delay getting to the first "on".
- initially, until you have dose 1 worked out, keep dose 2 and the following ones as they are now.

John

Near-infrared light is neuroprotective in a monkey model of Parkinson disease. - PubMed - NCBI

These researchers seem to feel ready to move forward to clinical trials of NIr in humans with PD. Apparently the safety of NIr has been adequately demonstrated -- at least, when used in the therapeutic range.