Hello Friends!
Thank you for all your kind comments and support {to those of you who wrote the nasty cowardly and anonymous ones, the spam ones never get published, so save your negative energy for someone who gives a hoot}
One thing you see a lot of on these forums, where people are sharing their own situations, is the sheer volume of patients who sleep for in excess of 15 to 18 hours a day. I am one of them. I can sit down to watch a programme and suddenly wake up two or three hours later {in the middle of the day} I have addressed this with my Parkinson's doctor and nurse, as well as my GP. I have been told it's just one of those things that happens when you have Parkinson's. Live with it. Er, well, no, thank you, I would prefer to try and find out if there is anything I can do to turn this around, specifically attack this at the cause and not simply treat the symptoms. I have long been an advocate of treating the cause, not the symptoms, yet most GP's treat symptoms. Maybe if they treat the cause they'd put themselves out of business? Well, with no cure for Parkinson's {yet} they don't have to worry about that!
I started looking at a rumor that was circulating about PD and protein consumption.
Back in the summer of 2025, I kept seeing questions regarding {a necessary part of a healthy balanced diet} and its effect on the efficacy of the "Gold Standard" treatment for PD which is currently Madopar. I asked questions but didn't find any clear or useful answers. I put in a self-referral through my surgery to be seen by a dietician, in the hopes of finding something useable. {prepare to giggle} It became a classic example of Chinese Whispers, sending three and fourpence, we're going to a dance . . . and a fortnight after my request was processed, I received a visit from a very nice lady who had been sent by one of those PAVS or Hub type organisations, who had, in true Chinese Whispers style, received a message that there was a lady who needed advice and information on how to cook. I did get a free pen out of it, but that was all I got.
Since then, I have spoken to the new PN in my region, and she has clarified a great deal on this matter. We all know protein is vitally important to metabolism and growth, so the earlier information seemed counterproductive, and she confirmed it is a myth! Chinese Whispers had diluted the question and answer resulting in the "don't eat protein" advice. The correct information is to eat a proper, balanced diet to include all food groups unless there is a specific reason not to. However, the protein consumed by Parkinson's patients should be high-quality, low-fat, so, for example, fish, chicken, lean meat etc and avoid high fat, low quality protein. Well, that's fairly sensible, and is what most people should be aiming for anyway. Nothing to see there! However, Madopar should be taken on an empty stomach to maximise absorption, and it should not be taken at all with dairy products such as cheese and full fat cream as the high fat dairy component will seriously effect absorption. There we have it! Do not take Madopar within an hour of eating cheese! So, if this is all correct I will be adjusting the amount of cheese, type of cheese, and when I eat cheese.
Now, let's go take a look at the excessive sleeping issue.
I am sleeping throughout the day, and I am also extremely lethargic, I have no interest in anything, and I've gone past the point of caring. This is something that most people on the Parkinson forums are complaining about. So what can be done when the medical profession treats the symptoms and not causes.
Let's look at this list as it pertains to me:
1. I am not eating properly; therefore I am not receiving good nutrition which is necessary for healthy sleeping patterns as well as many other things.
2. When I do it eat, it is highly processed junk food, crisps, chocolate, cheese, etc. None of this provides good nutrition and the high sugar levels in my diet will contribute to a lack of energy/ energy spikes etc
3.
My vitamin B complex, folic acid,
haemoglobin, magnesium etc are all very low and this is known to affect energy levels, mood and so
on
4. My blood pressure is dangerously low, and that in
itself will cause lethargy, tiredness, sleepiness etc
5. Nearly every one of the tablets I am taking have drowsiness and Do Not Drive/Operate Machinery warnings in their contraindication sheets
So, just a cursory look and there are a lot of potential contributing factors. I'm not saying that lethargy and sleeping a lot isn't part of the Parkinson's because with diminished dopamine levels you do get sleepy, but with such a combination, a cocktail of symptoms and contributing factors, if addressing one, some, or all of these issues can ease the sleepiness by even a small amount it would be a great help.
Starting this week, I am going to tackle this list. I will be following up on getting blood tests for vitamin and mineral levels as soon as one can be arranged. I have already removed all junk food from my shopping list! Cheese is cut to a minimum.
In the meantime, we are covered in a blanket of snow, it is bitterly cold, and we shall see where this goes next!
You are very wise to revisit everything the way are are doing. I discovered from a cardiologist at the clinic that ezomeprazole can affect iron levels in the blood, so have been prescribed iron tablets. Another pharmacist recommended taking them with orange juice to improve absorption, and there are instructions about not having eggs, wholemeal or dairy within so many hours. And so on. Like you I have a chronic illness (scleroderma) and one thing soon leads to another as the illness progresses and the number of meds and interactions and side-effects increases.
ReplyDeleteHave you tried buying good quality ready meals? Such as COOK, or premium supermarket meals, for example, for days when cooking proper food is a step tooooo far.