[bubblyshar]

Hi all,

I have been on this board for the past 6 years for my Dad who lives in Canada. He was diagnosed with PD 6 years ago and started taking medication 2 years ago. His first symptom was left sided tremor and now on the right. His foot also started dragging and now it drags quite often.

He takes Sinemet 25/100 3 times a day. I don't see him getting any relief from the Sinemet and he has some new symptoms which really bother him.

For example, he does not sleep well at night. He will sleep maybe 3-4 hours and then be awake the rest of the night. The next day he is really tired and ends up dozing off quite often.

Another thing I notice is he has a persistent dry cough especially at night. He also complains about some phlem at night.

He does get constipated every now and then. Aloe vera has been helping a bit.

He also started complaining about what sounds like possible reflux recently.

It really hurts to see my Dad suffer.

Do you have any recommendations for sleep, cough, gastro issues?

Any advice would be useful.

Thanks!!
Shar

[johnt]

Bubblyshar,

I'm not a doctor, but make of this what you will.

I notice that your dad's daily dose is quite low, 300mg of levodopa, for someone 6 years post-diagnosis. Nevertheless, I'm still surprised that you don't see him getting any relief. I would run the side-to-side finger tap test on him every 15 minutes during a drug cycle. If there is literally no relief, I'd get back to the doctor. If there is some relief, but insufficient, I would consider increasing the total dose by increasing the number of doses in a day. Perhaps, looking at agonists and rasagiline which have the advantage of spreading out the therapeutic impact, but have the disadvantage of worse side effects.

Regarding the constipation. I suffer from this badly (which suggests my ideas on the subject are not worth listening to). More fibre in the diet simply blocks me up more. More liquid is good, but easier said than done - I rarely feel thirsty. Movicol, a powered gel, does some good if I take it frequently throughout the cycle - but, I can't stand the taste. My most effective response is a water enema - but the advice from medics is that these should not be used regularly.

Finally, the constipation may be one of the reasons that Sinemet is not being as effective as hoped for.

I have no ideas about the cough.

John

[aquario]

Organic chia seeds have been helping keep me and my wife regular. I put 3 tablespoons in a glass half-filled with water, stir for a minute or two, then soak them overnight. The next morning I add some blueberry (or other flavor) kefir and add a spoonful to my oatmeal. Tastes great and works well.

[Jomar]

Does he take 1 pill or 2 at time? They do have a short active time frame - 4 hours per dose or so on average- sometimes less than that..

My dad is taking 2 C/L pills, recently upped from 4 times a day to 5 times in 24 hrs as needed..per drs agreement.
Adding other meds at his age (80+) came with too many side effects ( hallucinations, delusions, anxiety etc)
He was able to use Mirepex as an add-on med for short times at low doses in past years.

I think your dad should see/call the doctor and explain how the dosage level is not working for him. Dr may even suggest to up his pills a bit over the phone as a test..
The dr should be very flexible about meds adjusting as it is an ongoing balancing act so communication is important.
If not find another dr..

miralax or a generic is what my dad uses for constipation ,as well as yogurt a couple times a week.

[Aunt Bean]

At our last support group a PWP said they started taking NiQuil for cough (not the one that says colds and cough ) before bed and that is helping them sleep. I am finally getting relief from constipation. Started taking Barlleen's High lignon Flax oil about a TBS -keep in refrigerator , 1 teas ground flax seeds (also keep in fridge) 1 TBS hemp protein powder mixed together in a little yogurt in the morning and am finally doing well with this problem after 42 years of bowel trouble. I have been constipated most of the time since I was 14 and had a diving accident which started the nite drooling/ right foot drag. etc. Except for a couple hard years with ulcerative colitis , constipation has been my number one problem all these years! If I go a couple nites without sleeping well, I use a pkt of Knox gelatin (unflavored) dissolved in water before bed and that seems to restart my sleep pattern again. God Bless and guide you, Aunt Bean

[TexasTom]

Hi Shar,

This sounds all to common.

Constipation Relief (This is from Katheryn Holden, a wonderful dietician, at the National Parkinsons Foundation).

Prune Juice Cocktail for Constipation
For people with frequent constipation, a safe and effective remedy is the "prune juice cocktail," a preparation used in many hospitals.

- ½ cup unsweetened applesauce
- 4 tablespoons wheat bran (can substitute ground flaxseed -- it must be ground, not whole)
- 6 ounces prune juice

Mix well, and store in refrigerator. Take a tablespoonful a day at first, gradually adding more if needed, till you find the amount that works well for you. The bran helps keep the stool bulky and soft, the prune juice contains a natural laxative, and the applesauce gives a palatable taste and texture. Aim for 25 - 40 grams of fiber in the daily diet, and drink 6-8 glasses of fluid daily. It may be helpful to also have a serving of 4-6 stewed prunes 2-4 times per week, for added fiber and additional natural laxative.

This recipe makes about 10 fluid ounces total.

One thing I learned is to avoid any and all pain medication that is opdiod based. I really think pain is the lesser of two evils between constipation and pain. Double whammy is when I am constipated, colon presses on my spine, causing extreme pain to walk. Walking helps the constipation. Vicious cycle, ended up in Emergency Room after nine days of no bowel movement.

When my colon backs up, food isn't processed, and my sinemet uptake is reduced.

I never slept more than three hours a night. I was a walking zombie, while Clorazapam works for some people, I am still working and didn't like the additional fog. I don't like that for long term, but there is a point when you wish for sleep. Many nights watching Netflix at 2am.

Only thing I have found that works.... Exercise. I know I am sounding like a broken record, but I was too tired to exercise. I've found a fantastic group with my Rock Steady Boxing for both support, social, and exercise. I hate exercise, but love to show up to support everyone else. Oddest thing was I went to 5 or 6 hours a night of sleep! Haven't done that in years.

Reflux -- ditto. Neximum or the generic helps.

I also have a CPAP. I did two sleep studies that showed it was more than just a simple obstructive apnea issue. CPAP is helping in keeping my oxygen at night. I also take sinemet in the early hours of the morning to release by body. Dystonia will wake up, can not roll out of bed. Rescue sinemet (one tablet) and sip of water.... 30 minutes later I fall back asleep. Yippee!

Dry cough.... get him to the DOCTOR! You are in Canada, and I hope it is just allergies, but I just had part of my lung removed due to cancer. They caught in early, but I have zero phlem just a little tickle cough. Adenocarcinoma of the lung. Not a common PD issue, but in my case when my bowel stopped for nine days, had a CT scan done. It was in the lower part of my lung, and noted as a 'oh by the way' by the radiologist.

Enough rambles for this morning. Hope all is good, but do insist a doc take an xray of his lungs.