Reply To: What are all of your symptoms that are PD related. Please list them.

[Katherine]

I am so sorry that you have so many problems to deal with. (And I empathize.)

First, the akathisia. I did a little research and found that there are a few things that may help decrease those symptoms:
(1) Beta-blockers, such as propranolol.
(2) Benzodiazepines (a class of drugs commonly used to treat conditions such as anxiety, insomnia and seizures. This includes Clonazepam, which several people have mentioned as helpful to them. I also take a very low dose of Clonazepam and it is extremely helpful.)
(3) Low-dose mirtazapine (an antidepressant).
(4) Anticholinergics (medications commonly used to treat asthma and other conditions).
(5) Vitamin B6 (I also take this.)

As for the macular degeneration, again I’m so sorry you are having to deal with this on TOP of everything else. I have not found any relation between PD and macular degeneration.

The oily, scaly skin you describe sounds like seborrheic dermatitis (I mentioned that, above).

Mood swings can definitely (frequently) occur with PD. Yours clearly are upsetting for you. I don’t know if you’ve seen a Psychiatrist, but possibly someone could help? Could also help with sleep problems. [Been on any antidepressants? benzodiazepines, mood stabilizer? If so, which one/s — only if you can to share, of course.]

Leg swelling (which I had massively in June, and was emergently hospitalized) could be secondary to cardiac and/or BP issues from PD. Perhaps there are other BP meds which could be helpful, instead of some of the ones you were using before. [Do you know the name of what you were/are taking?]

Have you had Speech Pathology? That helped me immensely with the volume of my voice, swallowing safely, and (believe it or not) short term memory! I never expected that they could help in so many different ways. I had it twice a week for 6 months, and swallowing — which was terrifying and painful — is just about gone! YAY!!!

If you are having “off” periods prior to taking your next dose of Sinemet, has your doctor tried adding Nourianz? I took it briefly but felt that it was drastically increasing my dyskinesia and stopped it. By any chance, are you on Rytary? I was constantly fatigue on Sinemet — 10 hr. sleep at night, falling asleep during the day, naps were essential. I hated it. It also caused severe nausea for me. So my Neurologist changed it to Rytary. And oh! what a difference! It’s inordinately expensive and Medicare, nor my advantage plan, don’t pay. However, I found out that the Pharmacy at the Medical University of SC was more than happy to obtain it for me for free!! I am on it 6 X/d, so they send me a massive quantity of pills (540, to be exact) every three months. It is “refillable” after one year. There are also some Christian organizations who help patients afford extraordinarily expensive meds. (One is helping me with kidney medicine I am taking.)

One last thing: I was fascinated by your exaggerated startle response. I have that, too!!! I never put 2+2 together. I wonder how many others have that.

Well, if you’ve read this probably too-long missive, then I congratulate (and admire you! I’m sure I left out some things, but please ask again. It is such a blessing to be able to be in touch with someone who “knows”.

I forgot to mention: google “Autonomic Nervous System”. If you are not already familiar with the ANS, I think it will fascinate you and answer some of your questions.

With all my best to you,
Kathy

P.S. My strangest symptom is: HICCUPS! (I already wrote that on the other page.) Do you ever have those? It’s because the diaphragm is having a little fun with me.