denise
Forum Replies Created
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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. I know the sebaceous oil glands can be overactive in Parkinson’s patients. Both father and son-in-law most definitely had very oily foreheads/heads throughout. Thankfully, the “Parkinson’s odor” seemed to only last approx. 2 years per cycle. Let’s hope it stays at bay for now.
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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 caregiver, until we finally convinced her she needed help one year before his passing. How has all this affected me? I formed the “Positively Parkinson’s Support Group” in our area with the premise of sharing one positive strategy or observation you’ve made in the past month that is helping in some way to alleviate a symptom (or many). Its a group which shares both medical and non-medical opportunities to improve the quality of life among our members!
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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 anyhow, so the DBS stopped both his tremors and his dyskinesias. Its an amazing surgery!
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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 away his dyskinesia (most haunting symptom, ruined several prs. of shoes over the yrs, due to rolling over his ankle, and yes, we tried botox, but it did not work)! It also took away his tremor, his bradykinesia, his soft speech, etc. He has had it for at least 15 yrs.. He also fully gained his abilities to raising out of bed (on his own), out of a chair or couch, fully able to dress, button, zip himself, including the one arm of a coat. His fine motor skills for typing improved. And most surprisingly, he lost his urgency to urinate; and was able to function normally without any accidents or no longer need a urinal to supplement. The brain bleed had advanced his Parkinson’s 10 years ahead. Not only did the DBS get him back to baseline, but it also set back his symptoms by an additional 5-10 years; as what we had originally hoped. DBS is miraculous and wonderful, despite the early setback. Praise God!
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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 recover all his deficits.) Four months later, he is back to his stairmaster exercise, and once again, the extreme tremoring started until he once again, reached that level of “being fit” once more.
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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.
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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.
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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 sustained or elevated heart rate up for 20-30 consecutive minutes each morning. At first, the exercise brought about undesirable extreme tremors while exercising, but that soon passed over a period of 2-3 months, when he got more fit and recognized how much exercise performed like medicine; for stress management and for reducing symptoms. That lasted 3 years before he went on to sinemet. Fast forward 15 years, and he receives leg & foot botox shots to turn down the dyskinesia movements and toe curling. This is not working, as we know its a side effect of the sinemet over time. We are presently investigating DBS surgery, which would allow him to reduce the amount of his meds and thus the dyskinesias. Wishing you the best. PS- We’ve been reluctant mannitol takers, the bottle I purchased from Amazon says R & D use only, on the label. So, I’m watching these posts to also check that out. -
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 of his foot, and its hard to watch. Sometimes he’s even tripped his own self by the one out-of-control leg swinging around and grabbing the stable foot. -
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.)
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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 the surgery, because as others have stated, “it gave him his life back.” And I will tell you, it was not without the risk; but we’d still do it again, despite my husband falling into the category of the 1% who experience a brain bleed post-op. He came home well after the implantation of the electrodes in his brain, doing well, but within 24 hours, he had 2 staring seizures; and I knew something was wrong. He was in the ICU, the reg hospital, in-patient facility for two more weeks for all kinds of therapy and then 6 weeks of therapy at home. Still, when time allowed healing, we had them implant the pacemaker-like control center of DBS. Two more weeks after that, he got his life back and we had accomplished what we initally set out as our goal, to turn back the clock by 10 years on his undesirable symptoms. If a patient waits too long to have the procedure, then there exists the possibility of dementia symptoms setting up, and you will NOT pass the cognitive tests; thereby disqualifying yourself as a possible candidate for getting the surgery in the first place. My recommendation is, if you are in good health otherwise, and feel strong and have a clear mind; go for it. Just make sure the surgeon provider has done at least a thousand or more of these, and has a good reputation. I highly recommend this procedure to all my friends with Parkinson’s. I only wish they were all candidates to get it. Do not wait too long. The benefits far outweigh the pitfalls, in the long journey of Parkinson’s. Just do it! God bless.