Where do I go from here?

It’s been a while since I posted on this forum. For several reasons (some quite bizarre, such as a prescription being posted to someone with a similar name as me), 2020 was a nightmare due to constant under-medication and difficulty in obtaining a drugs review.

This year has been a little better, but it has become clear that my deterioration is rapid. When I was diagnosed, the neurologist predicted 10 years in which I’d lead a normal life, and then 10 with some difficulty before things got really bad. Nearly 4 years later it is clear that this was a ridiculously optimistic forecast.

I am currently on 5xStalevo 100/25, and Pipexus 2.1, plus 2x Madopar CR 100/25. The last time I spoke to my neurologist was in January when he said he didn’t want me to be on any. more drugs. He referred me for dbs, but 6 months later the referral hasn’t been dealt with.

The neurologist I see is outside my NHS area, which has the unfortunate effect that I don’t have the advice of a Parkinson’s nurse.

The medication barely controls my symptoms. I have chronic insomnia and am grateful if I get 4 or 5 hours sleep a night and I am usually awake by 5 .am… I take my first Stalevo of the day at 7pm together with the Pipexus, and then I take another at 10 a.m. But I don’t feel any benefit from the drugs until 10.45 at the earliest. This means I am feeling dreadful for nearly six hours between waking up at 5 and feeling the effect of the drugs by 11. I’ve had to give up all activities that take place before 11, including a Parkinson’s Dance session and a neuro physio session,

The symptoms I have during that time are stiffness, often painful, shuffling, shallow breathing – I feel that I’m not getting enough oxygen, and an inability to breathe through my nose. 40 minutes after taking the Stalevo at 7 I get an attack of restless legs which lasts around 20 mins, and I get another attack at 10.40. From 11 am I’m not too bad, and I’m able to exercise

The drugs only help with some of the symptoms. I have developed a squint and see double, for which there is no cure. I have chronic constipation which has made my piles and prolapsed womb worse. My body is constantly moving - I’m developing the characteristic waving movements of my upper body as well as the restless legs. I also have low blood pressure and my balance has also deteriorated which means it is only a matter of time before another nasty fall.

In the last year my husband has had to take over all the cooking because my involuntary movements mean I am unsafe in the kitchen, He also helps me get to bed and he does most of the cleaning and housework.

A few months ago I thought maybe I could apply for attendance allowance, but I rang advice lines and nobody responded, so that has gone on hold.

I’m not at all hopeful about getting dbs. If I don’t get it, TBH, I’ve had enough. I don’t see any other option other than Dignitas.

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Jane_L, after reading your post a couple of times,I feel terribly for you, you are in an awful place with your PD, but based on your summary, your mental state seems clear which is a good thing as you make decisions for your care. Has your neuro ever mentioned Amantadine for tremor or Rasagaline for long term dopamine support, or taking something like Miralax and a probiotic like Solace for your constipation? Do you take any supplements like Mucana Pruriens to enhance your Stalevo/Madopar combination, and any supplements for insomnia or restless leg? Have you ever tried acupuncture? Still several things you can try, and yes DBS may be a good option, but if not available to you then there are still some other possibilities. I would not give up hope if there are still things you have not tried.

Thanks for your reply DHP. And apologies for my rant yesterday. I was feeling unusually down. I’ve been told that my dbs referral will be triaged this week. Once I know what is happening with the referral I’ll see if I can get an appointment with my neuro to discuss what can be done.
The pipexus I take is supposed to help with the dyskinesia, but has never been very effective.
I count myself lucky that at least I do not have any sign of dementia. My father also had PD but he wasn’t affected nearly as badly as me physically, but went quite loopy early on,

Great re DBS referral!, my neuro recently told be there have been significant advances in DBS. You could try Gastrodia elata for your dyskinesia (research link below). Also think you may want to try Solace probiotic (link also below) to help a number of your symptoms. In addition I take Ambroxol to slow my progression, which is not prescribed but my neuro is fine with (you can read more about a current trial also in a link below). My grandmother had PD and extreme PD dementia, it eventually did her in while I watched her slow decline as a child.