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By MarylandCG On 2010.03.30 16:07
I just moved in with mom in January to assist her with all her needs. She had some really great days and then Medicare decided to stop paying for Mirapex. The doctor put her on requip. Her independence went down hill fast after that. I'm now helping her in the bathroom and helping her dress which I didn't have to do before Requip. Her episodes which were coming about 3-4 times a week now appear 3-4 times daily. This includes freezing, uncontrollable shaking and severe pain in her arms and legs. After 2 weeks on Requip, we were notified that Medicare won't pay for the full dosage she needs, her doc sent a request for exception which was denied. We went back to the doc yesterday and he strongly recommended she go back on the Mirapex. I will pick it up from the pharmacy tomorrow along with an antidepressent they put her on. She is on sinement (blue pill) every 3 hours and will take 1/2mg of Mirapex with it and at 10pm the mild antidepressent.

I got her a bed rail which is helping and I'm trying to get her a Rolling walker with seat. I just got handicap plackards for the car and a wheel chair. I want her to remain independant as long as possible. Sorry this is so long.

Here are my questions:

1. Are any of you having success with vitamins like B6 and Coq10 or any other herbs?
2. I am not able to return to work as she needs someone with her 24 hours and I do not want her in a nursing home. Is there funding for family caretakers?
3. What other mobility aids are you using that help?
4. What other meds (OTC or prescribed) are helping?

I realize everyone is different, I just want some ideas to help mom. She's 75 and has been diagnosed since the early 90s. Her symptoms increased in the last 5 years since losing dad unexpectly. They were married 52 years. She is small in stature (5'0 and maybe 115) and does have good days but they are few and far between lately. I'm hoping going back on the Mirapex will fix that.

Any advice would be most appreciated. She has a night attendant from 7p to 7am and me during the day. Once a week her night attendant is off and she will not let my husband help her, just me.

Thank you!

By susger8 On 2010.03.31 07:54
I would recommend the U-Step walker. This is designed for people with neurological conditions, and it offers more stability and support than regular walkers. If her doctor prescribes it, you can get most of it paid by Medicare (it is quite expensive, about $800, but worth it).

http://www.ustep.com/walker.htm

A lift chair is also a good thing to have. And we have a lightweight wheelchair, that was originally used only when he had to go to a doctor's office that had bad parking that was too far to walk with the walker, but he uses it nearly all the time now.

Funding for family caregivers -- I wish!! We all wish! You might want to look into getting a live-in health aide. It usually costs about the same as having someone come in 8 hours per day. But, you have to pay out of pocket. I have had good experiences with the various aides my father had had over the past 3 1/2 years. We used an agency, which costs more but has some advantages. Having a health aide has kept my father out of the nursing home so far, thank goodness.

Sue

By Pearly4 On 2010.03.31 11:46
Hi - I'm not a regular contributor or caregiver anymore but feel compelled to stop in once in a while. When caring for my mother (before her death) we found a lightweight wheelchair most helpful. She could push it herself when on and needing only mild assistance and it carried her packages and offered a seat when necessary. We could push her when necessary of course and for long distances. She occasionally used a cane -- we taught her to "kick" the cane when frozen and it would allow her to start moving again. We looked at the U step but found it bulky and it wasn't much use in our home. The normal wheeled walker was occasionally useful though it won't assist when freezing occurs and she ended up pushing it farther and farther away from her until she'd fall on her face!

As far as funding -- once she was on Medicaid's assistance for elderly home care we found we could have gotten some pay for some assistance that we were providing but preferred to stay out of that kind of thing for relationship issues. There are many volunteer agencies, some stretched to the limit, but you can try contacting your Area Council on Aging - they may be able to provide you with some respite caregiver assistance so that you yourself can at least feel you can get out more often. That seems to be about it -- I would have settled for being able to at least make a tax deduction for the care we were giving!

There are a lot of meds that may or might or can or do or will for a while assist. Its most important to find a physician who is educated and who stays abreadst of what is available. And changes are always needed. Look for a movement specialist or at least a neurologist who is active in the treatment of parkinson's patients - stay away from general physicians. My mom took Stalevo in varying dosages - its a combination of Comtan and levodopa/carbidopa but they are available individually as well.

Hope something in this helps - if not, I'm sure others will have more ideas, we just seem to be a little slow to answer lately!

By MarylandCG On 2010.03.31 19:49
Thank you both so much for taking the time to reply. I'm hoping others will join in. I can use all the advice I can get :)

I looked at the U-step and while it looks interesting I'm not all that sure it will work for her. It's 24 pounds and she has to hold the hand brake to move it. She's not that great with coordination. I LOVE the idea of kicking her cane to get unfrozen. We'll try that!

I also heard that counting steps is helpful, or putting something in front of her when frozen. She actually taught herself how to get up from a sitting position when she's having issues. She carries a small tube of chapstick in her pocket. When she's sitting she will toss it on the floor then bend to pick it up which enables her to get up. Neat little trick.

We got the wheelchair simply for trips to the mall. She likes to get her hair done, and occasional mani/pedi's and I got tired of renting one from the mall. We don't use it in the house. Thanks for the tip on contacting my area council on aging. I will do that.

She has had 3 doses of Mirapex today and NO episodes. We are hopeful! Getting her to pay the 234 a month for it was difficult but once I agreed to pay every other month for her she was on board. So far she's glad she is! :)

Thank you again SO MUCH!
Hugs!

By LOHENGR1N On 2010.04.01 00:20
Hi MarylandCG and welcome to the forum. I'm a patient so I didn't answer your post right off, I figured I'd let some of our knowledgeable caregivers/partners share their wisdom.

As to vitamins and herbs, be careful, watch out for interactions with medications. Many herbs will interact with a number of medicines (not only anti-parkinson's meds). Cq10, a few years ago it was being studied as a neuro protective to delay progression of Parkinson's and to also delay the addition of med's in early stages of the disease. A small study (between 30 to 50 people) was done and the results were promising. However the researchers pleaded with the public especially the Parkinson's community not to take Cq10, as to be able to do the next round of studies on a larger scale volunteers had to never tried it. Well the news hit the Internet then the national television, the news casts proclaimed Cq10 stopped/cured Parkinson's and people rushed out to buy and try it. In other words the Parkinson's community made it almost impossible to conduct a new study in the scale researchers needed to proceed with. Also there are many "Snake oil Salesmen" out there willing to claim and sell miracles. It's best to find a Neurologist you trust and run any remedy or herds past them before trying them.

In closing this just a thought that struck me, how much does your Mom rely on Her cane? (does She lean on it for support?) It will surely "unfreeze" Her by kicking it but if She rely's heavily upon it We don't want Her face planting into the floor. Again welcome to the forum, take care, best of luck and hang in there.

By Pearly4 On 2010.04.01 05:54
Obviously if you actually kick the cane you might kick it out from yourself, but the idea is to simply give your brain a different idea than simply walking, the same as marching or counting or dancing. She could sometimes think of walking upstairs to get the same effect -- made her attempt to lift her leg in a different way and she would unfreeze and be able to begin walking again.

Your mom's chapstick idea has the same effect and I love the fact that she came up with it herself!

By lvmymom On 2010.04.16 19:26
Aids:
1. The pole - It is a very sturdy pole that you can put next to the toilet and the bed and one near her chair as well. Very handy and both my folks used it a lot to pull themselves up and help themselves down slowly.
2. The lift chair has been recommended already, and they too each had one.
3. Crocs - these are great shoes. Light weight, easy on and off, no sock required and easy to keep clean. And come in many colors.
4. Adding weight to the walker helped us. We added a 10 pound weight to the basket... this helped slow it down so it didn't get away from her. She use to push the walker and she and the walker would move forward while her feet would freeze and she'd look like a bridge over a large river running under her. Always scarey. The weights helped a lot
5. Computer is wonderful for entertainment (card games) and correspondence. My mother got a lot of use out of it. Less now that she is progressing...
6. If holding something to drink is hard, we use straws now. She drinks coffee, water, everything from a straw. Very helpful.
7. I am at a point now that we are adding all kinds of help to her wheelchair but you are not there yet, so I'll let that go for now.

Your mom may learn to fall ... my mom did and I'm thinking most people do learn to fall. Be prepared for that. Some soft knee pads may be nice eventually. They drop to their knees first then fall easily. I know my mother's knees were always bruised and torn up... eventually she broke arms, legs, jaw and cracked the back of her head... staples ... ugh. Those days are gone, she is in a wheel chair now and things are better - although she fell out of her wheelchair the other day as she was listening to music with her eyes closed. Rolled forward onto a stair railing and hurt herself, so now we have a nice strap she can wrap around herself for security as she gets wheeled around and as she listens to music.

You take care. Step by step we get through this, don't we.... chin up. Your mom is lucky to have you on her team!

By karnlowe On 2010.04.20 21:44
I just joined this forum and found the information here quite helpful. Physical therapists disuaded us from purchasing a rolling walker as many Parkinson's patients lean forward and the fear of falling over the walker outweighed the walker's benefit.

We are looking at a scooter for outdoor use and mall walking and a motorized wheelchair for indoor use (you may get one of these covered by Medicare if prescribed by your doctor). My husband had frequent falls and is in constant danger of falling. He has suffered a subdural hematoma in the past, so we must be very careful.


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