My mum was diagnosed 7 years ago. She is doing ok although 14 weeks of shielding at home with my dad has been very very challenging for them both. She also has COPD so very vulnerable. she has a lot of back pain and at night neck and side pain. she has been passed from pillar to post during this period - gp (oromorph) to parkinsons nurse (come off oromorph) etc etc. She has also tried some CBD oil with no affect. can i ask if there is anythine else she could try on top of her normal medication - i have heard of a chewable cannabis that has had great pain relieving affects for people with parkinsons symptoms. any thoughts? thanks very much
I use Ambroxol to alleviate my PD shoulder pain, and it really works for me, but it does more than that for me too, it may even be slowing the progression of my PD. Ambroxol is an old cough medicine that is being found to help a lot more than a cough at a higher dose (and is well tolerated at even the higher dose, which is what I take), a lot more - but do your own due diligence. You can get it over the counter in France, or buy it on Amazon or a few other online pharmacies.
Here is some research on Ambroxol and its help with pain:
ambroxol effectively suppresses symptoms of chronic, inflammatory, and neuropathic pain. Toxicological experiments showed that ambroxol can cause CNS effects, but only at very high doses; such effects have not been observed in clinical praxis. Its effects on peripheral, pain‐sensing nerve fibers are sufficient to explain its analgesic effects upon local or systemic administration.
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1527-3458.2007.00032.x
i.e. it helps with a lot more than sore throat pain, which it most certainly does for me at the higher dose
And the recent trial findings on its potential impact on PD
“we confirm that ambroxol has potential as a drug to target the glucocerebrosidase pathway in PD and increase GCase activity in the brain. These findings concur with cell and animal modeling, which indicate that ambroxol modulates α-synuclein levels. We believe ambroxol therapy has promise for further investigation as a drug to improve outcomes, particularly in patients who have PD with a GBA1 mutation and potentially in those without a GBA1 mutation:”
Trial dose: “dose escalation, with each dose administered 3 times per day as follows: 60 mg (days 1-7), 120 mg (days 8-14), 180 mg (days 15-21), and 300 mg (days 22-28). This exposure period was followed by 158 days of administration of ambroxol at 1.26 g per day (420 mg 3 times per day).”
https://jamanetwork.com/journals/jamaneurology/fullarticle/2758317
i.e. it seems to work on PD at a higher dose, to which I will personally attest that it does having been on it now for 6 months and presently taking 300mg 2x per day
Bottom line, Ambroxol is helping me, now,not years from now when we know even more about it, now. If your doctor doesn’t know enough about it to confirm trying it or not, then its truly your mums call. If your doctor is concerned about safety at the higher dose, I recommend you do your own due diligence on that, if you get satisfied, then again its your mums call. For me at least, I’m not waiting on trying anything as safe as Ambroxol that could slow (or rmaybe even stop) the progression of my PD that I can get my hands on, and so I’m on it, and I’m extremely thankful for what is to me a game changer, an old cough medicine.
Wishing your mum well and freedom from pain.