Denise

As it should, and as it did for myself and my husband. My husband had a PD diagnosis for 15 years before we submitted to the possibility of DBS surgery. We were formerly in the camp of “never”, that is, until his dyskinesias seemed out of hand and he was losing the ability to be stable on his feet. I recommend NOT waiting quite that long to get…[Read more]

Both my husband and my father were/are Parkinson’s patients. My father passed in 2020, however, my mother did tell me that Dad went through similar periods of what I am about to describe. My own husband went through two cycles during his 16 year diagnosis, of have an acrid sour smell that came out of his pores and onto his clothing and/or sheets.…[Read more]

My father and then my husband both had/have Parkinson’s Disease. I am not worried about getting this disease genetically because both of their “maternal grandmother’s” had it. It followed that pathway in both of the men in my life. I have had restless leg syndrome, but believe that’s just a menopause issue.  And my mother was mostly my father’s…[Read more]

If they are doing a curling motion as he walks, then that is dyskinesia (the side effect from Sinemet). Some people I know have had success in controlling that with Botox shots into the leg and the foot. Painful as that sounds, it might be worth it. My husband tried the shots, and they did not work for him. He was heading towards getting DBS…[Read more]

My husband underwent DBS surgery last November. Sadly, he made up the 1% that results in a brain bleed. It took hospitalization, step down facilities, and at home P.T., O.T., Speech, home health, etc.. In April, he was ready to receive the second part of the surgery. Two weeks later, his DBS was turned on. It is nothing short of a miracle! It took…[Read more]

When my husband first started to exercise, after diagnosis, he would tremor excessively for the first three months. It appeared that once he got fit, the tremors subsided. Now, recently he had a brain bleed post-op to Part A of DBS Surgery (the unfortunate 1%), and so his exercise program was greatly interrupted. (Its taken him several months to…[Read more]

My husband always feels as though he’s burned through his medicine much faster when he does the stair master. He believes the lack of dopamine is what makes him feel tired or weaker. He always views it as a wearing off each morning, expedited by exercise.

Thomas R- Can you please tell us where you purchased your mannitol? Can you send a link and also tell us your dose? This would be much appreciated. My husband is currently entertaining thoughts on DBS surgery, so if we could hedge that; it would be great! Thanks.

Dear Beth,
My husband did not take the usual and customary meds to start with. We wanted to postpone the inevitable inefficacy of the meds, not to mention the undesirable side effects of dyskinesias. So here is what we did: he took 1 mg of rasagaline (brand name Azilect, 1mg/daily) and did one half hour of aerobic exercise daily, keeping a…[Read more]

Dyskinesia is the unwanted side effect from synthetic dopamine. The involuntary
movements that are broad swings of the legs or torso, like what you see Michael J Fox doing when his meds are on a downward trend. My husband gets this: his toes curl (involuntary), his right leg swings in broad circles. This combination forces him to walk on the side…[Read more]

What dose are you taking and how often? How does this equate to synthetic dompanine, such as sinemet? I ordered some off the internet for my husband,
but was concerned when it arrived as a powder in a lab-like container, with
no instruction. Your insights?

My father’s maternal grandmother had PD. My husband’s maternal grandmother also had PD.

I have three children, and neither they nor do I exhibit any PD symptoms. (Well, I get restless leg,

I assumed that was a menopause gift.)

https://www.neurologylive.com/view/idiopathic-parkinson-diagnosis-deceptive