Diagnosed today, seeking for help

Hello,

Just today my loved one has been diagnosed with Early PD. We are terrified, but we have no knowledge of the disease. I am joining this site in hope of learning everything I can to be her support during our fight against this disease.

Can you please, give me advice about how to proceed? At this moment she has shaky hands some days. Some days only a pinky some days the entire hand.

I read that biking is very good for delaying the effects of PD. Any word of advice would be greatly appreciated.

thank you very much,

Andres

39 Replies

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  • I refer you to my Posts and Replies under my Profile Link.

    What are these people (PWP) doing?

    vimeo.com/191664871

  • Thank you so much. I am watching the video and taking notes. Great resource. And it gives us a lot of hope. Thank you again!

  • Doc. Stanley Fahn

    World-famous leader in movement disorders, Dr. Stanley Fahn was the keynote speaker discussing myths and misconceptions in PD, and several members of the University of Florida Center for Movement Disorders and Neurorestoration also spoke and participated.

    video

    healthunlocked.com/parkinso...

    37:20

    Myth 4. “No response to Sinemet 25/100 three times a day is considered a non-responder.”

    a.Each person should be treated individually and each may require a different dosage of Sinemet to get a response.

    b.Some physicians fail to push the dose after it reaches 300 or 600 mg/day.

    c.My “limit” is 2,000 mg/day.

    Parkinson’s disease (PD) is explained through animation. The video focuses on five main factors: causes, symptoms, diagnosis, treatment and the pathology of Parkinson’s disease.

    7:28 Benztropine helps w/ tremors

  • Very interesting thank you.

  • That's a very good video. Only thing I would add to that is try Mannitol. Some people have had good results with that, with better sleep, a better sense of smell and reduced symptoms. The downside is that it can give you diarrhoea, though on the upside that does help with constipation.

  • Hello iamminime

    First of all take a deep breath. There is no rush. Take your time to learn about Parkinson's it is a slow moving beast. People live just as long with (PD) as without. As far as meds go they all have side effects and you must learn what is a side effect and what is PD. What other symptoms does your love one have. Next please don't delay taking any meds it does nothing in the long run. My opinion is to be agressive with meds so both of your lives can be as normal as possible. Next comes exercise. You can not do too much. I have attended several different exercise programs that are for PD people and found them lacking. Just not demanding enough. In my 9th year of Parkinson's (PD) i started Crossfit and it changed my life. I went from only being able to mow for 15 minutes on a riding mower to as longs as i needed to 2 or 3 hours. Now 2.5 years later i at 63 can do anything i please. From running a mile to biking 20 miles. I now can dead lift 415 pounds. I travel , drive my Corvette, play with my grand kids and still "play" with my wife. I have to find things to do just to fill my day.

    Bailey

    ps

    How old are you and your love and where do youcall home.

  • Bailey, you have just made me cry. Your experience is moving. We are both 55, from Puerto Rico. She suffers from depression, so she takes drugs for the condition, she likes to sleep a lot and she has the trembling in her hands. This last symptom is not permanent. Sometimes it could be two or three days without any shaking.

    I have started a search for local communities of PD but haven't found one yet. Maybe some one from the South area of Puerto Rico can help me with this one.

    Thank you so much for your encouraging words and the best luck for you and yor wife.

    Andres

  • Welcome, Andres The sooner your wife can start exercising, the better things will be in the longer term. Forced exercise -- the biking and boxing for PD programs in particular - can help greatly. Nordic walking at a good clip, dancing, tai chi are great too, but you do want some forced exercise in that mix. i think it extends the efficacy of the drugs i take and helps forestall dramatically upping the dosage. Exercise is a medicine itself.

    Just so you know, this comes from someone who never exercised or went to a gym b4 being diagnosed. i could go on about how much exercise is an essential therapy for PD but instead of repeating myself, here's a link to an earlier thread posted recently.... healthunlocked.com/parkinso...

    hope this helps..

  • It sure does help. Thank you so much. I am feeling so much better after a couple of replies to my post. I am grateful to find this community. Thank you, thank you and have a wonderful day.

  • from forced pace exercise I recently read that just keeping on the go is pretty good. I proved this twice this past year with two log haul holidays which I was not sure I was able for before I went which various reasons kept ,me moving every waking hour and I felt better when I came back than before I went. The depression could well be a symptom of Parkinson's as the apathy which can afflict Pwp'S (ignore caps.) I S OFTEN MISTAKEN FOR DEPRESSION . WHEN SHE IS PUT ON mEDS THIS MAY HELP SUCH PSEUDO DEPRESSion, aLTHOUGH REAl DE PRESSION IS ALSO A SYMPTOM FOR MANY who are on meds. Thankfully not me.

  • Hi, I am 82yrs old and have had Parkinson's I beleive since I was 64 my symptoms have become more troublesome in last 2 yrs, but at 82 I still keep active as much as I can and I beleive more active than some much younger folks who have nothing wrong with them. After all at my age you think well what's down to old age and what's down to parkys!! I have a few other health problems but, hey, just live each day and enjoy what you can 😀👍

  • Please watch the video that RoyProp has provided a link for. It is full of info about how to slow down the progress of PD.

  • I did, and found it extremely informative. yesterday at 6pm I was crushed, today at 4 am I feel so much full of energy and I hardly can wait to push my lady out of the bed and start jogging :-), really. A change of diet is coming right away and I am full of hope now.

    thank you so much.

  • Also something you may wish to view and bookmark to save for future reference resource is Richard Melvin's (Silvestrov) documentary on Parkinson's Diseases history and ongoing research developments.

    vimeopro.com/user60766261/r...

  • I am 62, was 55 when diagnosed with Parkinson's Disease. Start taking medication ASAP. Find what combination works best for your loved one. I agree with one reply that being agressive and taking whatever it takes to feel normal is essential.

    Exercising is key. I take yoga classes, have just begun crossfit, and most importantly RIDE MY BEACH CRUISER everyday. Bike riding is my life saver! Exercise, exercise, exercise!! That's the key to living a normal life.

    I also volunteer for research programs in my area. It has been helpful for me and if someone else can benefit from my results... even better!

  • You have made a good start in finding this forum. I find that being informed helps me to feel more in control. I did this by joining as many organisations and support groups that I could find, both online and in my local community and most provided information packs and guides. I also took a self management course organised by Parkinson's UK and attend talks for newly diagnosed at my local hospital. The resources are all useful on a practical level, but support from other PwP and their carers has helped me emotionally and I have made some new friends along the way. One word of caution. I read so many negative comments on taking medication that I was too afraid to follow my neuros advice and take Sinemet. However, after a freezing episode I panicked and began medication. Got my life back and wish I'd started it on day one. I am not a fan of gyms, but now do 5-7 hours of exercise per week, which I also treat as medicinal and never miss a session. I feel better now than I have done in years. Everyone is different, but on this site you do read from the voice of experience and it's open for questions 24 hours a day.

  • The bes advice I can give you is to avoid taking any Pd medication for as long as possible and start to do some meaningful exercise as soon as possible. You may think that your husband is not capable of doing meaningful exercise anymore but you may be wrong.

    Look at my profile and see what is possible. Remember that what he puts into his health is what he is going to get out.

    No Pd medication does anything to slow down the progression of Pd, only exercise has been shown to be capable of doing that.

  • John please stop with the anti med thing it out of date and makes no sence. Read the post it is a woman who has PD. Don't assume they are husband and wife.

    Pay attention to the post

    please John please please have someone else check your comments before you post them

    with concern

    Bailey

  • Hi Baley,

    I found it odd that John's advice about not taking drugs. It does not match with all I've read so far (little yet of course).

    You are right we are not married, yet. We are in love. I am the future husband. She is still in shock from the diagnosis and I haven't been able to convince her of what I am convinced now: There is hope if we do the right things. Today after she wakes up we are starting a new way of life.

    Regards,

    Andres

  • Bailey I must apologize for assuming that they were married, I am old-fashioned. I also made the mistake of thinking it was a man who has the Pd. No excuses for that.

    As far as your statement about being out of date, what has changed since I last looked? Is there now a medication on the market that is capable of slowing down or stopping the progression of Pd?

    I am not anti-medication! I want people to know that the medication available only treats the symptoms, not the Pd. If they are expecting to get better because they take the medication then they have been misled. I am not misleading them!

    If the medication patients are taking is actually helping to hide one or two if the symptoms, even if it is only for a couple of hours, then that is fine, as long as the patient is aware that that relief is short-lived. It will get shorter and shorter until it does not work anymore.

    With exercise, people tend too get better, eve if it is not curing the Pd, the symptoms can be getting better, with no side effects.

    So what is best in the long-run? Taking medication and slowly getting worse and having the side effects or doing exercise and slowly getting better, with no side effects?

  • Thank you John for your advice. I have to say that you are so far the only comment I've seen advising against medications.

    Best regards,

    Andres

  • I am not against taking medication, if it actually helps to mask one or two of the symptoms. That masking is temporary, as it slowly gets shorter and shorter until s ceases to be effective at all.

    I recommend doing the fast walking, which costs nothing, improves our fitness and in my case it has helped me to get off the medication altogether and has helped me to live a 'normal' life for the past 15 years.

    I cannot claim that it will help everybody as I don't know what other people are prepared to put into the walking. I walk flat out for an hour, three times a week. I sometimes walk more than 7 kilometres in that hour and sometimes less, depending on how I feel each time.

    I have been unable to walk for the past month, due to having flu and chest problems. I will start the walking again next week, if my chest is clear and will only be walking for half an hour each time and will slowly build it back up to an hour over the next 12 weeks.

    Good luck!

  • Every neuro/doctor has different advice. Just like ever person with Parkinson's has a different experience. I have read and was my choice early on, it does no harm to delay taking meds. Now then if you have a motor symptom that needs treatment you should treat with meds, exercise and conscious movement.

  • Hi Andres,

    One of the main meds for PD is Carbidopa (it comes with other names). A simple Google for side effects should help you understand.

    There are alternatives to pharmaceutical meds. Try here...

    fight-parkinsons.org/

    Personally, I am 18months into the Amino Acid protocol advocated by Dr. Marty Hinz. My symptoms are stable and slight. The hope is that the disease will not progress, and so far - so good. At any rate the aminos should not harm me. It is expensive in cash terms, but better than the alternatives.

    I tend to agree with John, that fast walking helps, I put in many miles each week, and feel the better for it.

    Regards

    Peter.

  • I tried to add some links to various organisations but for some reason this is the only one I'm having success with this morning.

    mailchi.mp/davisphinneyfoun...

  • Hello Andres, sounds like you have a positive attitude, which along with exercise is essential. I was diagnosed three years ago at 42 years old and although it seems to be slowly getting worse I have a very busy work and home life and completed the London Marathon in a good time in April (to raise money for Parkinson's UK). So keep calm, keep fit, stay positive and take time to work out what's best for you.

  • Hi. It's a scary journey because it's fear of the unknown. Just remember to breathe and also remember that nothing will change overnight. It's a slow process. Try and live for the day and don't fear the future. Easier said than done I know!! Welcome to the site

  • It's a shock to hear the diagnosis, but don't be terrified. And there is no rush, you can afford to spend time together today.

    You haven't said where you live, but anyway look at <parkinson.org.uk> for info on anything and everything.

    Make sure your partner sees a Neurologist who specialises in PD and movement disorders. Then a neuro Physio + lots of excercise programmes to choose from.

    Members of my 'team' also include a podiatrist (to rescue my feet from shaky nail-cutting!) and a hairdresser (it's a girl thing). Also Dental hygienist because I don't hold a toothbrush properly.

    Consider if you need to future-proof your house.

    Plan a treat to look forward to. How about going to the next WPC in Tokyo!

  • Look up Delay the Disease. I am a Certified Personal Trainer who works one on one with people with Parkinson's. I also lead group classes in Delay the Disease.

    Exercise daily. Get the heart rate up as much as possible. Practice rotation exercises and making really big movements.

    You can look them up on their website: delaythedisease.com

  • Andres,

    It sounds like you've gotten lots of good advice here. Don't be terrified. PD is tricky, but it's not a death sentence. Orando por Uds. desde.Tennessee.

  • Thank you very much Trish. I have indeed received much more than I really expected in good information and good advice. It has really come as a surprise to me, a wonderful and nice surprise.

    Muchas gracias!

  • I suggest having a look at the website fight-parkinsons.org for information on research, nutrition and other approaches that have helped others.

    My partner was told by the neurologist, when diagnosed 4 years ago, that it was a downhill progression and nothing could stop that including exercise. It was so depressing to hear but thankfully this has turned not to be the case and there is much you can do to help. Just to let you know that some (English anyway) neurologists are out of date in their knowledge. Everything that has helped have been things we have found out through our own research. This includes correcting nutritional deficiencies as my partner is a long-term vegetarian.

    Good luck.

  • Hi Hill101,

    Do you mean that your partner's vegan habits was lacking in nutrients and you fine tuned it to correct that issue? Or did your partner abandon the vegan style completely?

    thank you,

    Andres

  • Lately I've been reading a book on B12 deficiency which can be a culprit in many neurological symptoms including tremors. With age we have less gastric intrinsic factor which helps B12 intestinal absorption and supposedly B12 deficiency is widespread in aging population especially among vegetarians. I just started taking sublingual B12 just in case, although my B12 blood test results were in normal range.

  • He's a strict vegetarian who does eat milk and eggs. It seems that with some people, any combination of ageing, diet and, potentially, a poorly functioning digestive system can combine to create nutritional deficiencies. Some can cause neurological symptoms, such as B12 deficiency. But you can have B12 deficiency and still show 'normal' levels in the blood stream because in some people it doesn't get through to the cells due to poorly functioning methylation (as I understand it). One person who has done work on this is Amy Yasko. Try googling 'nutrigenomics' and see if it makes sense to you.

  • HI mamminime

    sound advice from everyone just take each day as it comes when first being told you have PD it is quite a shock, but I have a great PD nurse which I see every 6 months and we discuss meds and other things about PD, I can speak to her any time by leaving a message, but if you don't have a PD nurse then do join "Parkinson's UK" group it is only a few £ (I think about £5 00) and you can get lots of information also if you need help any time you can speak to a nurse or doctor for advice.

  • Good luck on your journey - one thing I cannot stress enough is to let stress go! Stress and worry exacerbate the tremors & any other issues that may arise symptom-wise! I encourage my best friend here to hug me, and that helps him to relax when he feels tremors coming on. I gave him a plush Teddy Bear a long time ago (he's always liked it over the years) now it's there to grab and hold onto, to help delay dealing with tremors of the hands, it feels pleasant and gives him something else to distract! Otherwise the clenching hand actions, failing are frustrating to him at this point.

  • I was diagnosed just 6 months ago. Yes exercise especially biking is not just good but essential from all I've heard. Do it together and enjoy life now.

  • exercise does help

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