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By flowers12 On 2016.12.21 23:36
We saw the Neurologist on Monday and I told him how my hubby was beginning to thrash around at night again and was having some delusions and hallucinations, so far nothing too bad. Also was having more "zombie like" times now. I asked him what we could do before he got bad again. The Aricept had worked until lately. He suggested that we decrease the Sinemet to 2 tabs every 4 hours for 3 times a day and add the melatonin at night to help him sleep calmer. He said to see how that worked and we could always try Nuplazid. I asked if there was something else that would work the same because Nuplazid was extremely expensive. He said not to worry about the cost because he would write letters to the pharmaceutical company and get the cost way down if not free. He said the makers wouldn't want a patient to go without the medicine and would work with us. So, we will see what happens. He did ask for the report from the cardiologist to make sure there were no heart issues.

He also told me that this was the progression to be expected with Parkinsons and things will become more difficult. I'm feeling like I'm losing myself, everyday is the same or worse. I feel like I'm just existing. I wish I had family or friends to laugh with. Oh well.

By Mary556 On 2016.12.22 23:48
Best wishes and prayers for your husband and yourself, Flowers. You must be exhausted. I hope there will be some relief for you both.

Being a caregiver is such difficult and exhausting work, day after day. It stretches a person, that is for sure. The days when we could laugh feel far away. Recently I heard from a wise person that it is important to cry. Maybe we keep trying to be strong enough and we forget how to cry.

God bless all PWPs and caregivers.

By flowers12 On 2016.12.22 23:58
Thank you Mary, there just isn't an end to the constant demands day and night. I cry often now, held back in the beginning years but now I can't hold it back. Sometimes just hide in the closet and let it go. This life is most difficult and breaks my heart when my hubby realizes it.

Prayers for us all and big hugs.

By umajane On 2016.12.26 12:14
My deceased husband had BOTOX injections. It worked like a charm Best thing ever.. He got them every 3 months. It did not interfere with anything and it did not hurt.
It made a major difference.

By mymotherskeeper On 2017.02.02 13:42
The best thing we did was go to a Partners in Parkinsons event, I suggest looking it up and going to one. My parents were not listening to my suggestion of a movement disorder specialist but after the event, they allowed me to book an appointment. The event really highlights why they are a necessary part of the care team for a PD patient. I highly suggest getting one, almost 80% of their patients have PD, and they dedicate another 2 years past neurologists to movement disorders. I know some people don't have one close by but they suggest seeing a specialist at least once a year, they are worth traveling for.

Hope this helps! I'll be thinking of you!

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