For those who care for someone with Parkinson's disease
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By CG510 On 2019.08.01 01:29

Hi all.

By way of introduction, a family member is a PD patient and I have become a defacto caregiver and advocate. His condition has progressed over a period of about a dozen years to the point where his OFF state leaves him effectively frozen and 100% dependent on others, even for something as simple as reaching for meds and a water bottle, and speech is badly impaired. His ON state is still fairly good, meaning that he is ambulatory and physically able to do things for himself around the house, if with difficulty. When he gets too much meds he goes into dyskinesia which typically involves his entire body. When it gets bad he canít even stay in a queen size bed let alone a chair. He tends to pass from ON to OFF or DK very rapidly. The point of all this being, I gather that he is pretty far up the scale for these symptoms.

Carbidopa/levodopa dosage has of course risen steadily over the years. If he relies solely on immediate release it is required every 90 minutes around the clock (else he wakes during the night frozen and unable even to use the urinal). With CR/ER we have extended that to every 3hrs (understanding that at any given time two or more doses are overlapping, but this seems to provide more predictable and smooth results than a higher dose half as often). At the moment, he takes 3 of the 50/200s every three hours and occasionally needs a 25/100 IR booster to get by. I gather thatís quite a lot. He also takes Entacapone every three hours and Amandine daily.

I am interested in finding other patients, or caregivers of patients, at a similar stage and severity of the disease so we can compare notes.

Additionally, early this year he had DBS surgery in the hopes that at a minimum it would bring his worst OFF state up to a point where he is still minimally functional. Unfortunately, so far even at fairly high power levels it has managed only to somewhat reduce the required C/L dosage and frequency, but if he sleeps through just one dose his OFF state is still profound. The DBS also seems to cause issues with his hands, in particular a ďtinglingĒ (like neuropathy I suppose) which he sometimes describes as on fire and very painful. It also seems to cause some dystonia manifesting as involuntary finger twitches and flexes, leading to very painful fatigue or cramping in the hand. Early days on that, but so far efforts to tune it out havenít worked. If those sound like familiar DBS side effects Iíd like to hear from you as well.


By junipersage On 2019.08.13 13:19
Hi, CG510. My husband's Parkinson's is not as progressed as what you describe, but hopefully someone else will come along who can discuss something similar. Meanwhile, welcome. I was glad to hear your feedback on the DBS experience, as that is something we are considering now. Sending lots of supportive thoughts to you.

By Sheridan On 2019.08.13 17:21
My husbands Parkinsons is fairly advanced as well. He has had for over 20 years. Most recently was on Rytary but was still having much off time as well as dyskinesia at times and a lot of pain when in off state. He has tried most of the dopamine agonists over the years which caused many troublesome side effects so discontinued those. Not a candidate for DBS as no tremors and wouldnít help his balance or walking. He had the Duopa pump inserted about a month ago and is doing so much better! He rarely has any down time now cause when he feels like he is wearing off he can press pump button to get a small extra dose and it works in about 10 minutes. He is pain free now which in itself is a huge improvement! Also he is actually able to take an exercise class now that he can count on being able to function. He is hoping with the added exercise his legs will get stronger and he will be able to use his walker more and wheelchair less. I know itís early days yet but he is very satisfied so far so thinks the surgery was worth it. Wishing you the best...

By moonswife On 2019.08.17 05:22
CG510....Everything you posted hit home with me. My husband fought the good fight until 5 days ago. About the "tingling" your husband is experiencing: an adjustment to his stimulator can be made by his programmer. We went through it for 10 years. Mike's issue was usually his speech. I learned how to have two programs and switch between them. I used to tease him that I could "mute" him so he better not give me sass. Read all you can about the meds. I could see the signs and altered them based on the activity level, illness (like a cold), stress, pain from a fall. It is tough, but we had to be tougher. Best of luck

By debspottery1 On 2019.10.01 10:39
I saw a documentary titled "Ride with Larry" about a police officer who had PD and had tried many years of meds, then eventually used medical cannabis. The results were immediate and very evident. Google the story and share with others - it's valuable.
My husband has balance and freezing issues, and we believe he's had PD about 4 years or more. He uses Sinemet and Medical Cannabis and it is keeping him functional.

By Pennypen On 2019.10.10 14:15
Hi, I'm really confused by your post. My husband has PD and the highest dose of Sinemet he has ever been on was 5 times a day. His neurologist said that was the highest dose that could be prescribed. I can't imagine how on earth you manage giving meds so frequently. My son, who also has PD, was just prescribed the extended release form of Sinemet, twice a day. We are waiting to see how this works for him. Medical marijuana is not easy to obtain in our state; you have to find a doctor who has prescribing privileges, then you have to go to a special center to get it, plus undergo drug testing every time you refill your rx. Both father and son have appts to see a specialist about DBS and/or ultrasound therapy. Both have also seen a number of neurologists over the past few years. They seem to contradict each other which is also very confusing. I admire your ability to manage the meds and care as you do.

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