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Topic Questions on advancing of this disease Go to previous topic Go to next topic Go to higher level

By HKMP5N On 2013.08.01 15:46
Greetings all:

My father is the PD patient here and I am his only care taker (his son). I have noticed over the last 6 weeks or so he has tremendous difficulty walking. His steps are the slowest I have seen in him and he no longer picks his feet up, just shuffles them.

He is discussing the idea of getting a motorized wheelchair/cart for the house. What is everyone's experience on this? My greatest fear is once he gets used to this motorized device that he will pretty much never walk again.

My Dad's mental abilities are so severely degraded now and he is definitely deeply depressed. He is 3 years in after diagnoses with PD and honestly, now when I look at him he truly looks like he is 'sick'. He is STRONGLY against assisted living or any flavor of.

Another question. Has anyone had their patient have some fairly extreme hallucinations? My Dad skipped a bunch of doses over several days and he was calling me at 2:30 in the morning telling me there were "people in his kitchen playing cards and they were keeping him up". Obviously he is home alone.

Many thanks in advance and I appreciate everything people share here. I don't post much but I read this place daily.

By carman96 On 2013.08.01 16:16
Please speak to the doctor about adjusting his medications. It is extremely important that he takes his medication on time every time. Some things can be helped by increasing or decreasing certain medications.

Yes, unfortunately hallucinations are common. Some can be caused by the medications. Be persistent when speaking with the doctor. And be prepared on what you want to ask.

Hang in there and know that in this forum there are many who will try to help. You are not alone.

Motorized wheelchair might be okay. But realize he will be running into things. Also ask the Dr. if physical therapy would be helpful.

By Mary556 On 2013.08.01 18:21
My Mom shuffles, too. She is using her walker more often now. When she wants to get up and move around she will do a few laps around the living room. If your Dad is still strong enough, maybe a walker would be good for him?

My mother's hallucinations stopped when her Dr discontinued Mirapex.

My Mom does not forget her meds or my Dad's; she is better at remembering than I am. But she is disoriented to time, waking from a nap and not knowing what day it is or whether it is morning or night. Without another person here to monitor her, she would take double doses.

Best wishes for your Dad.

By LOHENGR1N On 2013.08.01 19:18
HKMP, If Your Dad is missing doses of His medication then that might be the reason for the drastic increase of his decline in walking ability. Our Doctors try to keep the levels of medication in our bodies (minds) at a level where we can function best but not have adverse side-effects. So if Your Dad has skipped dosing his level has dropped off and he would be showing more or increased signs of our underlying disease. Hallucinations can be from some medications or too much medication or even abrupt withdrawal from medication (read skipping doses here). Try to keep an eye on his medicine and be as sure as you can he takes it when and how he is supposed to for a couple of weeks and if the dosing problems are to blame his walking should slowly start to improve again. By all means run this by his Doctor especially his missing doses. So his doctor can consider that before adjusting the med's again. Good job staying on top of things and kudos to remembering us to ask for some help. Keep up the good caregiving, try to remain calm when stuff happens like this and never hesitate to ask away on the forum, We're here and all are glad to help. Take care, best of luck ans hang in there

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By HKMP5N On 2013.08.02 09:00
As always thanks for the responses. Yes, he does have a walker and uses it from time to time. For some reason he shows preference to using his crutches, maybe he feels something better with that over the walker, I don't know.

The thing with his meds is I organize his pills in a 'pill tray' that has (4) slots for each day of the week. For the longest time he was doing good, then out of the blue he started missing several doses for no reason he says other than he forgot.

I am taking him next week to his neurologist, will look forward to the feedback his DR has. Based on his tremors I think the DR might increase his dosage after this appointment.

Here is another question. I speak with his DR at each appointment. One of the things the DR does is have my Dad walk down a hall and back. See, Dad knows he is being watched so he makes a great effort to walk in a normal manner, thus the DR does not witness what I see all the time. I don't want to be negative in front of Dad to his DR about his "true condition" but I am lost for words to do so respectfully.

By Pearly4 On 2013.08.02 09:40
I borrowed a video camera and photo'ed my mother when she wasn't aware of it. Just told her I was playing with the camera so she wouldn't get self conscious or when others were around I'd pretend to be photo'ing them. If you have a cell photo with capabilities you can do the same thing quickly somewhere.

I took it in and showed her doctor and he was thrilled - gave him a much better idea of her condition at the time than the "hall walk" as well as her ability to feed her self, etc. - I had planned in advance so had time to get lots of activities.

Its a common complaint among caregivers that the PWP manages to cope well for the doctor whether physical or mental capabilities are being tested.

By makrivah On 2013.08.02 12:54
Great idea about the videos! I had posted awhile back about my PWP "performing" well above his normalcy for the doctors.

Having the videos will provide the much needed information for evaluation and treatment. Thank you! Thank you! Thank you!

I just love this forum and all the people on it.

By Mary556 On 2013.08.02 17:30
Do you think your Dad might be having a hard time to swallow his meds? If pill-taking is becoming an ordeal for him, maybe he forgot on-purpose? But he could not really admit that to you.

My Mom had an episode last week. As her PD progresses, it is becoming more difficult to swallow. Usually her carbidopa/levodop pill goes down easily, but that particular evening she had an awful time. The harder Mom tried, the worse it got; she was very upset and sobbing. It took an hour to calm her down and try again.
If I were a PWP who lived alone and felt overwhelmed by difficult swallowing, I would be very tempted to forget my pills for a few days, to just not deal with it.

In my Mom's case, I finally realized that her posture is likely the problem. Her head is leaning forward more than usual and gravity-wise it seems next-to-impossible to swallow in that position. Now I remind her to hold her head up as straight as possible, to pretend she is looking up at the stars. That seems to be helping.

By Pearly4 On 2013.08.02 18:37
Where the pill-taking is concerned - my mother always took hers in a spoonful of applesauce. No need to crush, just drop them in and swallow. Worked for her even in the later stages when aspiration was an issue.

By carman96 On 2013.08.02 18:49
There are some good ideas here. Anything to make it just a little easier.
There comes a time when our loved ones cannot be left alone anymore. This is the most difficult thing about the whole damnable disease. My husband would never remember to take his pills if they weren't put right in his hand (actually I use a paper pill cup) Good idea about the applesauce.
His neurologist relies on me to tell her how he is at home. She knows he does better when he is there with her. Also it is in the day so his pills are working. I can email her anytime. So the video is an excellent idea and I could email it to her if it was something I didn't want to sow her in front of my husband.

By LOHENGR1N On 2013.08.02 19:43
Again it is very important to tell His Neurologist about missing several doses from time to time. That is probably the reason for increased tremor also. You don't want Him over medicated because the Doctor doesn't know he isn't receiving the proper or prescribed dose right now and think an increase is called for as this dose isn't holding the disease semi-stable anymore.

By parkinit On 2013.08.03 12:32
I agree with probably the skipped doses being the culprit of all. Resolutions to that?

1) Alarming watch (if he turns it off and ignores, though, this will not work). Assuming he still has good enough hearing.

1) Alarming pill dispenser/box that continues to go off until the pills are removed (check the internet).

2) Pill dispenser that will send you an e-mail if they are not taken (again, the internet).

Some of these mentioned above can be quite expense and elaborate, but if he insists on staying home (which won't occur with him being alone for much longer, I fear), these may be options.

By dkleinert On 2013.08.03 18:54
I echo all of your statements about how my husband "rises to the occasion" when we are at the Neuro's office. He is so dexterous, so smooth walking down that hallway, so witty, stands up straighter, etc.
We have the same issues with missed doses. I have to work full-time, and I always check his pillbox when I arrive home. He used to be really good at taking them all, and filling his box, now I am seeing the box filled incorrectly, and missed doses both.
Dementia is a real factor now.....one of the most painful parts.
I have alarms set on his phone - he listens to the alarms, ignores them and goes right on doing what he is doing so intently (usually doing some vague "work" on the computer), and so that is how he misses them. When I am home, I pay attention to all of the dose times, and see how it happens. I can't stay home with him - have to work. No other way.....I do fear the future....how I will cope....I hear your concerns.
Big HUGS to all of you who are dealing with this many faceted, wide array of symptoms which are undocumented symptoms in medical journals, path we are experiencing - what an awful disease it can be.

By Mary556 On 2013.08.04 20:34
Pearly4, thanks so much for your suggestion. I didn't know applesauce would work this well for an uncrushed pill. My Mom said it is a "piece of cake" to swallow now. Thank you for sharing what helped your dear mother. You have made my mother feel better, too.

By Pearly4 On 2013.08.04 21:00
Oh thank you - I'm glad we could help. It was actually my mother who worked with her pharmacist before her disease advanced to come up with the idea - the beauty of it is -- no protein! And different flavors. And in single packs with a plastic spoon - you can carry it with you anywhere! Or use a more economical larger jar at home.

By moonswife On 2013.08.05 09:40
HKMP5N,
My husband is the PWP. I am still working, a small business owner, so I set the alarm on my own phone and call and chat with him. I find one excuse or another for the call (would you take chicken out to thaw, eg) and then ask if he has taken his 2 o clock pills. Then I ask what he is drinking to swallow them, and from the response I can tell if he is bluffing. The applesauce trick works especially well in bed at night, if that is part of the regimen. You can cut straw in half and jam thru lid of the little cup.
Best of luck to you children caregivers. When you take a husband it is "for better or worse", but when a parent is the PWP and you are parenting your own children, God help you.

By HKMP5N On 2013.08.05 10:06
Thank you everyone for the ideas, especially the video trick. I am headed to his house tomorrow to refill his pill tray and other items I must do. It was another "not so great" weekend, but I keep moving.

I will video him tomorrow and I take him to his neuro on Wednesday. I am quite certain the contrast will be wide. Interesting thought on how much better your patient does at the neuro sitting straighter and such.


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