What helps reduce Dyskinesia .

[mymomhaspd]

We are giving her sinemet , amantadine, Mirapex etc. Over the years we have reduced the amount of sinemet (I think she was overdrugged in the beginning - and we couldn't tell as her tolerance to meds was good ) . Now 1/4 sinemet every 2 hours , to try and follow the less meds at more frequent interval helps dyskinesia . Sometimes it works at other times she gets her off sooner than later . Tried to alternate it with Mucana ..

She had a fall a month ago ( not the first time) and after this her ability to move has become even less (she has been needing someone to help her even go to the bathroom the last few years ).. but worse now as she hasn't been able to exercise much at all (bought her a theracycle a few months ago). Her balance and strength are pretty down and I think with every fall her self confidence that she can move also goes down the drain.

Right now trying to get her back up with PT and massage etc .. still no energy to get on the theracycle .. in fact she has the symptoms of sleepiness , where she can barely keep her eyes open. Does anyone know why ? Is it too less levodopa or a side effect of sinemet ? What should we do ?

Also started her on NAC since yday , gave her two today but will taper to 1 a day till we know how it affects her .

She has had pd for 10 years , with some neurologists thinking she didn't have PD to begin with and over time things changed ..

So the questions are

1) How have people maintained a balance between on and off times .. i.e. dyskinesia and stiffness

2) Why the sleepiness.

3) She is caught in the cant exercise, hence wont get better cycle .. how to break this cycle.

Any feedback would be great . To see her go through all this breaks my heart everyday :(

[mymomhaspd]

I meant , what should be done about the sleepiness part ?

[Bailey_Texas]

I am 62 10 years dx with pd i have tried a lot of meds in a lot of diffirant ways

Consult her Dr. first but this is what i would do

My suggestion are as follows reduce meds 1 at a time till she is taking only one i think it should be sinemet.

Use a dose she can tolarate and see how it works. then reintroduce 1 med at a time

and note all changes

This way you can tell what med does what.

Rytary is a good med that contains carbidopa levodopa just like sinemet but longer lasting.

I take only Rytary now.

good luck

[mymomhaspd in reply to Bailey_Texas]

She had major dyskinesia with Rytary , and I think there were more off periods also . Cant remember all the details but it didn't seem to suit her at all.

We have had to do our permutation /combination to play with levodopa - 1/4 every 2 hrs (which puts so much stress on my dad) , as the doctors couldn't really help , apart from giving amantadine.

Right now her sleepiness / lack of energy is an issue too .

[soup]

How long has your mom had PD?

[mymomhaspd in reply to soup]

10 years

[michaela13]

Try to get her back on the bike.be there with her so She won't fear falling. I made myself do it and begin to feel stronger

[mymomhaspd in reply to michaela13]

Trust me we are trying - but rt now my dad needs help from another person to get her on the bike

[AmmieM]

There are a lot of exercise DVDs that can be done sitting in a chair. You can find them on Amazon. Maybe they can help. Good luck

[mymomhaspd in reply to AmmieM]

Got her the theracycle .. she just doesn't have energy rt now

[hopedope]

Does your mother read this blog herself? She needs to become more proactive. She is the one who has PD. Maybe she could listen to some PD books on audio (if there are any). Moving to music with you all might help a lot. I am so glad that I am in control of PD myself though I am glad my husband is so supportive too.

[mymomhaspd in reply to hopedope]

She is 70 plus - fighting with this disease and others (had a vertebroplasty in the back) has left her pretty drained . I feel there is a slight dementia which is becoming apparent now ..

[hopedope in reply to mymomhaspd]

She is lucky to have you helping. I hope she will be able to improve. Using her brain and focusing on everything she tries to do and moving in any way possible-these may help. Listening to music often, TV not much. Audio books of novels or PD books. Clothing that she can manage herself.

[hopedope in reply to hopedope]

Also good nutrition. Try to make sure she gets lots of fiber a day.

[rhenry45]

Use Xadago. You cam get it from goldpharma and it eliminates dyskinesia and reduces the symptoms dramatically. it is the best drug I have ever tried and it has no side effects to me at all. it is a true wonder drug.

[mymomhaspd]

Is it available in the us markets? Seems to be only available in EU?

How do you combine it with your sinemet ? My mom is taking sinemet and Mirapex both,.

[rhenry45 in reply to mymomhaspd]

Take xadago once a day in the morning 100 mg tablet along with first dose of sinemet. As I said, you can buy it online at goldpharma.com. It costs about $150 for a month supply and it takes about 12 days of shipping time. You can order it so don't worry about it.

[mymomhaspd]

Thank you so much !!