Parkinson's Movement

Sinking Ship

I've been married to my beautiful wife and high school sweetheart for 45 years. Our world fell apart recently when she was diagnosed with Parkinson's. At first was the falls, so we went to a ear nose throat "specialist" who after running several test determined it was the "rocks" in her inner ear that was causing the problem. After a few sessions with a therapist, I suggested that I suspected something else was wrong, so back to Primary Physician, who referred us to a neurologist who after eeg "that was normal" he prescribed lexadopa and diagnosed "a nonfluent agrammatic form of frontotemporal dementia versus perhaps an atypical of Alzheimer's disease." which only confused the issue more. When we decide the medication was not helping the balance issue we met with the neurologist and his response was "There nothing I can do, I am referring you to a behavioral neurologist. Shortly after we decided to see different neurologist 150 miles from our home, his diagnosis "PARKINSON'S" his prescription carbidopa-levodopa. Carbidopa-levodopa, side effects, scary!! Our world is falling apart, my beautiful lady, I her knight in shining armor can't do a thing against this beast only watch as it eats away her being. Just about this time a news report about " Cycling on stationary bikes may benefit people with Parkinson's disease, especially if they cycle hard and fast. " HOPE!!! So we decide on physical therapy before introducing "THE DREDDED DRUG" and another and another and another, different name same snake oil. Long story short "NO CURE, NO ANSWER. On a sinking ship and the best that can be done is a bucket and a prayer, I'm sticking with the prayer.

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Roram, get ypur darlin' wife into a daily exercise program -- doesn't have to be the same type every day, but something gets her heart pumping. Exercise is the one thing that has been shown to slow down the progression of the disease. PD Warrior, Dance for Parkinson's, and Rock Steady Boxing -- yes, boxing (it's "noncontact boxing") -- have the added benefit of camaraderie with other "parkies." I admire your bond, which is clearly strong and fast.

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Good morning Roram

I too have been with my wife the love of my life for 47 years. But i am the one with Parkinson's. It is not the end of your life only a big bump in the road. There have been many changes in the last 12 years i have lived with Parkinson's. The first is we have come to love each other more and grow closer every day, We spend 24 hours a day together and love every minute of it. There are hard times when i have side effects but they far out weighed by the good times. The "dredded drug" you speak of is what makes my life possible. You have been misinformed about meds for Parkinson's they are not the as bad people make them out to be. They carry risks but without them your love will do nothing but go down hill. When i was put on C/L at the 9 year mark of my Parkinson's it turned my life around. I also started crossfit at the same time. I went from barely feeding myself to running miles and dead lifting 415 pounds. I am 64 years old and live a great life. You love will most likly out live you as most women out live their husbands. So keep praying but get your love to start exercising and some meds you will not regret it.

Good luck

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Can you tell me more about CrossFit please. Bailey Texas I am a 65 lady. Balance is very bad, I recently broke my wrist and would like to know if this kind of exercise would suit me . I have a stationary exercise bike at the moment. Unable to walk far or go to a gym.So would it be worth me buying a CrossFit training machine. Dawn.

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Good morning

I don't think machines are a good buy. You will get bored with it. Crossfit does not use machines just free weights and you body weight. just get some weights a yoga mat maybe a kettle bell. Go to a Crossfit site and look at the wod (work out of the day) and do what they do if ypu can or pick out what you can do. This way you do something differant every day and you will not get as bored.

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Agreed that finding an exercise routine you enjoy is essential.

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Thank you. I needed your words of comradery. Like yourselves the positive outcome of this is, we too have come to love each other more and grow closer every day. I realize now how much I took for granted all these years, now every moment is precious. I thought about my criticism of the meds and I know it was a moment of panic and confusion. Just venting and I want to apologize for my insensibility to anyone who may have read my post. A small candle in the darkness like a prayer can be very reassuring. THANK YOU, God Bless you and your wife. Love is forever nothing can take that away

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Hello My husband is 75 and has Parkinson's He worked til he was 72 and in his days was a first class Carpenter

We believe he has PD for many years but diagnosed in late 2015

He has Madopar both ordinary and slow release but I can't bear to think what he would be like without it Before he had pain , restless legs and would be pacing all night

He does walk a little and we go out as much as he can manage

We have a great sense of humour

I hope all goes ok

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Hi Baileyl I totally agree with you.you gave roam the right answer about the meds.i had such a horrible tremor but after taking sinnemett it's improved so much,although I do keep dropping things and doing little things are still slow going but at least tremor is not noticeable. I found that stress causes the shakes.now that I have retired its calmed down as well.and thank you

Nikudi

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Read The End of Alzheimers and The Wahl Protocol and look into changing her diet. There are many things still that can be done! Empower yourself and your lovely bride! Medication can help....I think a combination of diet, exercise, meds and hope can bring about change.

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The correct diagnosis here is unclear and that needs to get straightened out before you can treat the issue.

"Carbidopa-levodopa, side effects, scary!! " - that says to me she got some form of immediate release C/L which is inappropriate for most patients. Get her a time release form such as Sinemet CR or Rytary. If that helps she has PD, if not, PD is unlikely.

"At first was the falls" - This calls for assessment for OH - orthostatic hypotension. If this has not already been done (it should have), get yourself a good blood pressure measurement instrument with a cuff and measure her BP lying down and then standing. If her BP drops 20 points or so she has OH which calls for treatment of that.

Also, since you seem highly motivated to help your lady perhaps what is working for me can help you both as well: healthunlocked.com/parkinso...

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Hi my husband has terrible OH. Any suggested treatments?

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First a question - what meds is he taking?

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He’s taking Rytary just started and this is his second day and a very low dose of BP meds.

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Had OH even before his diagnosis

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When blood pressure drops greatly upon standing up. "At first was the falls" - This calls for assessment for OH - orthostatic hypotension. If this has not already been done (it should have), get yourself a good blood pressure measurement instrument with a cuff and measure her BP lying down and then standing. If her BP drops 20 points or so she has OH which calls for treatment of that.

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A BP med to lower his BP? Does he have high BP lying down (supine hypertension "SH")? If so how high, and how low standing? Are these the only meds at all? Which BP med and how much? Sorry for all the questions but these things are relevant.

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Hmm not sure. It’s usually about 140 or little higher when sitting. Amlodapine 2.5 1xper day. Yep the only two meds for now.

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OK, great only those two meds.

For someone with OH his BP is going to vary between sitting, lying down, and standing and by time of day. Before messing with this you need to know what those numbers are.

By definition of OH his BP is too low under some conditions and also likely too high under others. There are things you can do to remedy this, but before I make any such suggestions, though, you are going to need a good blood pressure measurement cuff to monitor the effects of your interventions. There are a number of them. Here is one that I use: amazon.com/gp/product/B00C2...

Also, before spending any money we should confirm what "really bad OH" means. To me it means disabling: unable to stand up without fainting, particularly in the morning.

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Awesome thanks!!

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wish I had a suggestion but if I hear of any treatments I will definitely forward them to you. Take Care

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what is OH?

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Severe loss of blood pressure upon standing. Can lead to fainting and uncontrolled falls.

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Orthostatic hypotension

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Dear Roram,

Am in this forum because my mother has been diagnosed with PD since about 10 years. She was heavily over medicated for a looong time, and only recently did we hear the term atypical parkinsons and more precisely vascular parkinsons. I am including a link that describes what that means in my mother's case. For us, it was crystal clear and gosh what a relief because it describes her disease to a T. The downside - there is really no medication that helps her parkinsons. So we are reduced to lots of good food, extra vitamins and minerals, an antidepressant and an aspirin a day to prevent further damage in the brain. Walking helps hugely.

I am not a doctor, but by suffering through what seems like endless doctors' appointments have come to understand one thing: a regular neurologist all too frequently does NOT know how to treat or even diagnose parkinsons. The knee jerk reaction to prescribe more and or different medication can have a devastating effect on the patient. This is particularly true when it is an atypical form of parkinsons.

Wishing you and your sweetheart all the best - persevere and get to the bottom of exactly what type of parkinsons your wife has. This will be the key to figuring out how to deal with the new situation.

Regards, Jennifer

bcm.edu/healthcare/care-cen...

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Dear Roram,

Sending you and your soulmate love. My mom received a diagnosis of "Parkinsonism" after having a couple falls and slowing down her gait (shorter steps/shuffling). I am have been on a learning quest since then. One thing to tell you, in case you didn't know, there are a number of varieties of atypical Parkinson's. I have put together a document of what I've learned so far. I've collected a list of supplements and treatments people have recommended over time (I can't guarantee/for sure recommend these, as I wrote them in as they were given to me to be further researched) but I will attach the link to this document at the bottom of this message.

At the moment, my mom is trying out the Hinz' amino acid therapy protocol. It uses the more natural form of L-Dopa (mucuna pruriens) and supplements with other amino acids to try to balance the system. I don't know yet the results, as she is still in the beginning stages. It's expensive and involves a lot of pills, but if it works would be worth its weight in supplements, ha. It's a little nerve-wracking trying it, as it's not on the beaten path of pharma meds. But we decided to off-road a little here to see if it helps.

One thing to know, though, there is a variety of atypical Parkinson's called DLB or Dementia with Lewy Bodies. It does not respond well to Levodopa, which is a little fact to keep in your back pocket.

Also, I heard from Dr. Stanley Fahn, a movement disorder Doc in Florida, that Dopamine Agonists are not great for people over 70 years of age because they tend to cause confusion and hallucinations.

I adore my Mom, and can appreciate your search for answers. The way that helps me look at it when I want to hide under the covers from looking at it is that even though we can't control the existence of the diagnosis, we can stand hand in hand in facing it, researching it, responding to symptoms. Also, remember that everyone is different. Parkinson's seems to be as varying as cancer, which has such different outcomes and symptoms depending on which type you have. A lot of things can cause PD symptoms, so it's about trying and watching, taking a Sherlock Holmes approach.

Also, I would recommend going on Youtube.com and searching for Parkinson's conferences, annual conferences where doctors get together and present talks about PD. You can learn some from that from movement disorder specialist neurologists, this is the type of doc you need for PD... the specific type of neurologist. Some areas have movement disorder clinics with multiple varieties of specialists to treat PD. So here is my own learning document, which is a beginner's learning doc based on what I've learned so far. I hope it works, as this is the first time I've tried to share it. Please let me know if you have any problems. All the best, Sarah

docs.google.com/document/d/...

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Thanks for sharing your Google doc!

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thank you jmsbradord and skcw for your encouraging words and knowledge. The scariest thing is the feeling that there are no experts just prescription writers and I hate to insult those that really care but it's like a fireman trying to but out an oil field fire with water, he's doing his best with what he's got. I thank you again for your wonderful information and I hold hands with you on your quest for an answer. Hope and God are my greatest allies and I have faith that someone will find the answer for this beast. God Bless you both it's people like you that give me the motivation to keep on trying.

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Thanks so much for sharing your experience. My husband was just diagnosed and this is really helpful.

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Falling in the early stages of Parkinsons is unusual. It might be something else?

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I take Carbidopa/Levodopa, which I think has helped me. I was diagnosed in 2005, and can still walk well. The side effects I get from this medicine are: insomnia, and nausea. As of now, I think the side effects are a small price to pay for being mobile. Good luck to you and your wife.

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thank you sleezy. regarding carbidopa/levodopa, my wife tried it but she slept a lot and when she wasn't sleeping she was in a dazed state and that was through one 30 day 1 tablet 3x per day supply which the doctor cut down to 1 tablet at night, so she stopped taking it. her latest prescription is for ropinirole which she has not started taking and from what I read the side effects are the much the same. that's why I say same snake oil different name but we'll try it and see what this one does. I just read katincanada sugguestion for mucuna pruriens and maybe we'll try this before the ropinirole, although I read on WebMD that l-dopa/mucuna pruriens/cowhage " Unfortunately, most L-dopa is broken down in the body before it ever reaches the brain unless special chemicals are used with levodopa. These chemicals are not present in cowhage," but whatever the dopa we'll give it a try. exercise, drugs, supplements and a whole lot of praying. lost confused and angry to name a few.

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Try the natural medicine for dopamine Mucuna Pruriens is a levadopa and helps a lot of ppl that do not wish to use the traditional drug levadopa.. you can search that name on here also and see other comments of ppl using it.

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thank you katincanada

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Roram hi, I am so sorry about your wife.give the meds some time because the meds will I help.just as Beckley mentioned if she manage à bit if excercsie that will definitely help.

All the best

Niludi

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In reference to cycling. Look up tandem for PD you may find it on the Micheal J Fox foundation website. Great resource. Some of the YMCA are investing in tandem bikes for this. There also is Dance therapy and the big program.

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thank you, yes we are familiar with mjff and cycling, in fact about the time she was prescribed carbidopa levodopa I saw a news article about how much cycling helped this man with pd(Cleveland Clinic – Parkinson’s Bike Study ),we decided to do physical therapy in lieu of meds. I purchased an exercise bike and told the neurologist we wanted to hold off on meds and try P.T. and he recommended swimming as well as P.T. and gave us a prescription for both. so we exercise at home and go to a physical therapist twice a week. very little if any improvement- (at the time I wasn't aware of the terms V.E. Voluntary Exercise(at the individual's normal pace vs F.E. Forced Exercise( higher than normal pace) that's the key to the cycling and exercising, the RPMS during cycling and intense training during P.T.)- so she started on the C.L and the side effect was lethargy. So off that meds and continue exercises but at a V.E level. We saw the neurologist recently and he prescribed Ropinirole and continue P.T. He also tested her memory( the usual 10 question read back and draw this test) and the results were good. the problem is balance(falls and this the reason for stationary bike verses tantem have consider tricycle), confusion, slow movement lethargic and it appears to be getting worse. supplements we have tried l-tyrosine ld-phenylalanine, focus factor, alpha brain, vitamins c, d, b complex, etc. So step up the exercise(get a bigger bucket) and take Ropinirole twice a day is next.

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Good luck. In reference to tandem is the balance a problem when it is on a stand verse free riding. Most people with PD cannot sustain the correct rate for the time needed

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Also I know Lewey bodies vs PD some of the meds May cause the opposite affect. My personal thoughts are sometimes vitamins and supplements affect the medications. The pharmacist may be able to steal you in the right direction as to which meds are better taken together and how they are best taking. It is always a challenge.

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For years before my PD I did all me exercise alone . Since PD I heard of the benefits of walking and started walking fast with my wife. She has walked for years . It is now the best 43 - 47 minutes of my day. And last night she commented how nice it is to walk with me .

Don’t want to “gild the lily”, I hate this fate but am doing my best to stay positive.

Best wishes.🌞🌞

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best wishes to you Taranto98. gild away, even perfection likes a pat on the back. I hear you, about fate, you have the right attitude stay positive but if it's a bad day gild the lily, you deserve a big pat on the back. It's not about what fate slaps us with, it's about enjoying each day.

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Top of the morning to you, Roram! I had a similar path leading up to a diagnosis of Parkinson’s. For about 10 years, living in a small town, where there were no specialists, I kept on having neurological symptoms, that were progressing, but when I went to the Dr. year after year, no answers. He said I had essential tremor, for one. I kept falling. One time, it was really bad, I fell flat on my face in the street, on the pavement, and, literally froze, I couldn’t stop my fall. So I had blunt force trauma to my head, aconcussion, a large hematoma and gash, bleeding, on my forehead, two black eyes. After MRI’s and EEG’s still no answer from the Dr. At this point, my daughter stepped in and said she was moving my wife and I to the big city, where she lives. There is a huge regional hospital complex in that city, with many specialists, including neurologists and movement disorders specialists. So she hooked me up with a well respected family doctor. When I saw him, I was having a particularly bad day, with symptoms. I was having severe resting tremor with one hand, and essential tremor in the other hand. My balance was way off and my walking very slow. My speech was somewhat affected and, when I tried to write, all that came out was a scribble. He had me walk and I lost my balance and couldn’t walk a straight line, if my life depended upon it. My leg and arm muscles showed rigidity. Right away, he could see something was not right with me. After a very thorough examination, with my Hanna’s and head shaking, he told me that, in his opinion, I had Parkinson’s disease. He told me to wait in the exam room and he was going to call the movement disorders specialist neurologist, and get me an appt. to see him soon. So he went out of the office, and came back in ten minutes. He told me I had an appt. with the neurologist for the next afternoon. I saw the specialist, and he did a very thorough exam, explaining to me each test and where I was having my problems. Then he said that he was going to put me on a trial run of Cardo: Levodopa, for two weeks, because, for sure, I had some form of Parkinson’s, and he needed to rule out everything else and check my medical history and hospitalizations for the last ten years. I know this is a lengthy answer for you sir, but you need to know, that going on the Sinemet (Cardo/Levodopa) was the best thing for me. It stopped the worst of the tremors, I can walk much better now, and, basically have a lot more normal life. I’ve been on it for a while, and I have had NO SIDE EFFECTS! It’s important that it is taken at precise times, and I would recommend that you study research articles, that may prove to you that “knowledge is power”. At this point, I feel that I have my life back.I’m not completely free from Parkinson’s symptoms, but I am, at least, able to manage to handle the symptoms when they are way toned down, due to the medicine. Talk to the Doctor and, perhaps, a trial run of medicine, would be a good start, rather than continue feeling that your lives have been completely turned upside down, and that there may be no hope for help!! Wishing you both the best!!! Prayer is essential! I will be praying for you both, and my wife and I have prayed to help us through our health problems!🙏

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thank you ddmagee1, sinemet and now ropinirole. my wife does not show any signs of tremors, she mainly has a balance, communication, fatigue, confusion issues which appears to be getting worse. I recently saw the word "ATAXIA" posted on someone's message and read up on it. It seems to me this the problem she is dealing with. So where do we go from here. We are at the mercy of the appointments 4 or 6 months from the last visit so until then the answers (if there are any) to our questions will have to wait. So do we continue the meds which seem to aggravate the issues more, stop taking them because we don't know if these meds treat ataxia if that's what she has, and how are the meds effecting her if the meds are not for ataxia. I don't know if any of this makes sense but nothing makes sense anymore. Thank you for your encouragement and kind words. Our prayers are with you. "One day at a time Sweet Jesus"

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Yes, I have been diagnosed with Cerebellar Ataxia, a result of an artery problem pressing in on nerve roots in my brain stem/ cerebellum area. I was diagnosed with Parkinson’s about 20 years after I was diagnosed with the Ataxia.

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are you on medications or treatments are for ataxia.

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Yes, I am on two blood pressure meds, for the artery problem- Verapamil and Valsartan.

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thanks for the info. curious, does verapamil interact with your Parkinson's. ehealthme.com/ds/verapamil-...

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No

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great. I saw that article thought I'd pass it on.I got your back.

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