For those who care for someone with Parkinson's disease
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By SparkysGal On 2015.04.13 08:52
So far my PWP has been is charge of his own medication. I am finding that I'm often asking "Did you take your pills this morning?" When I notice an excessive tremor. I am still working full time. At what point should I take a more active role in assuring that his meds are taken on time? We go to the neurologist next Monday and I will be asking her, but wanted some opinions from those who have gone before. I don't think he is taking the medicine in a timely manner and possibly not even as prescribed. I just hate to be all up in his business, and I know he will be very angry if I take this over. He seems to do well with the afternoon pills and his insulin shot before bedtime, it's the morning that seems to be the biggest issue right now. Suggestions and/or thoughts?

By Wildcats1958 On 2015.04.13 12:34
I have been down this road for several years and am now the "manager of the meds" but of course this was a final blow to ego along with giving up driving. That was very ugly. The doctors told him repeadly that I should be in charge of the meds and I did know the routine , mg and timing ect. ect. We bought a small shirt pocket size pill battery timer that helped for awhile. Then he got so this Winter he didn't even hear the beeping and it didn't always register with him. He was missing meds and it SHOWED. I bought the timers at Mayo clinic and can provide the phone number. He was put back on the Extented Release carbio-dopia at bed time and that helps to last pretty much thru the night. Mayo said he could take one in the night also if needed. He takes Amandadine in the A.M. and P.M. as an extender. His confusion comes mostly first thing in the morning and I suppose he is depleted of the meds then. They have to have the meds first thing. He takes 1 1/2 every three hours but he had the two DBS surgeries so the stimulators are working all the time from the batteries. The timer would help you while you are away and that way the pills would be counted out for the day and you will know if he isn't taking any. Our local neurologist is strong on using the Exelon memory patch. He is on the middle dose and he says he feels so much more alert, we had known others that use it. She says it works at holding the memory problems back rather than restoring. He does seem better.

By LOHENGR1N On 2015.04.13 15:44
It is good to sometimes check on the DBS to make sure it is running. Sometimes they can get turned off by things like airport security scanners, department store security scanners by doors and at sections like electronics departments. Some large restaurant quality refrigeration units have been known to cause them to turn off. You don't have to take my word for it, it is easily looked up online.

By makrivah On 2015.04.13 16:42
As for administering meds:
I have a weekly pill box that contains a separate box for each day of the week. I have four weekly boxes so I can consolidate pill distribution to once a month which simplifies the reorder burden. He loves that he can slip the little daily box into his pocket. It is small and isn't that long slender shape so many pill boxes have ;o) if you know what I mean.

Here is the amazon link:

Each day has its own box divided into four sections (8am, noon, 4pm, 8pm) that are clearly marked (by me) on the top of the section. (I removed the stamped times to accommodate his exact schedule.) Note there is a DEEP box and a SHALLOW box to fit the number of pills to be taken.

For the bedtime dose, I use a simple 7 day pill box that we keep by his toothbrush.

My PWP takes his own meds, but simply by glancing at the box I can tell if he has taken the current dose.

If I am not with him at dosing time, It doesn't solve the way-too-late dose or the missed dose, but at least I know what's up. He is starting to recognize the signs when he is late taking his meds and can tell that he's late taking them. He doesn't like the way he feels and knows that regular dosing is key.
For the time being and we've been using this system since August 2013, this works pretty well for him.

Just another suggestion to help each other out. We tried a lot of things before this. The alarms (either using a separate device or the one on his watch) did NOT work. His "fat thumbs" wouldn't allow him to turn off the alarm so he hated that more reminder of what he could no longer do.

By trapper On 2015.04.13 22:33
I dont see Bubble-Paks mentioned. Or, perhaps I missed it.

I look after issuing pills for my wife as well as for myself, as we both have Parkinsons. Hers is more advanced.

I find that Bubble Paks are really helpful. I didnt want to go to Bubble Paks but now that we have, I would highly recommend giving them a try.

Let us know how you make out with tham.

By bksquared On 2015.04.13 23:47
My husband is still in charge of his meds. We use the alarm on his cell phone. If we are out it makes him feel more mainstream to turnoff the cell phone ring. It stops ringing after 3 alarms. I also monitor time intervals and will sometimes mention " I didn't hear your phone did you take your pill? Seems a less confrontational type of reminder. I bought a small cup with a screw on lid that holds water and pills in its base. Each morning he fills it with water. He loves carrying it with him so he is prepared to take his meds where ever he is. Another thought he carries a man bag that his children gave him. It is a small shoulder messenger style bag that carries his phone, wallet, meds, tissues, iPod, or iPad, etc. By doing so he has his hands free to hold his cane and grab to a hand rail. Since the children gave him the bag he uses it daily. So far he rarely misses his meds because everything is in one spot and easy to reach whether in the house or out for the day.. No running for anything.

By SparkysGal On 2015.04.14 09:49
Thanks to all for your replies so far. My PWP also has what he calls his "man purse" to consolidate all his stuff. After our visit to the Neurologist on Monday I'll update and let you know my plans to help monitor the meds.

By SparkysGal On 2015.04.20 14:38
Well the neurologist is not too concerned about his meds. She said continue to ask my PWP when I notice that his tremor is worse or if I know he hasn't taken his morning pills yet. She is more concerned about the pain in his legs and has ordered an MRI because they think it might be a back issue and not related to the PD at all. Overall it was a very good visit and she said my hubby looks great in comparison to many of her patients. We will visit again in 6 months unless something should happen to necessitate a visit before then. I am grateful that our journey so far has been a slow progression - he was diagnosed at 46 and is 62 now. He loves this doctor and trusts her judgment, we have been going to her for 10 years now and she takes copious notes and asks lots of questions. We always get a copy of instructions and/or comments. I'm glad we have her.

By SparkysGal On 2015.05.01 08:26
MRI results show Lumber Spinal Stenosis and we have been referred to a Neurosurgeon to take a look my PWP. He's a bit nervous but also hopeful that they can finally do something to relieve the leg pain. Here all this time we were blaming it on the Parkinson's and it turns out to be something else. When he was 50 he had a heart event and ended up having a stent installed and we missed the signs there, because I assumed his tiredness and lack of energy were due to the PD. From here on out I'm going to pretend he doesn't have PD when a new symptom presents itself. ~sigh~ He's feeling old right now. He asked me last night if I was angry that he had so many things wrong with him. Of course I reassured him that he hasn't done anything to make me angry at him and we have to accept the twists and turns in life. We have a close friend who's wife left him in the middle of recovering from brain cancer surgery and chemo, and he said that was in the back of his mind. So again I assured him that he's not getting rid of me that easy, I'm here for the long haul.

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