I am from Toronto Canada and I was diagnosed 4 years ago when I was 45. Just reaching out to find out about any alternative treatments you might have tried. It's pretty depressing to have this condition with no clear path to cure. Have you tried any alternate treatments? I have no tremors, however, my walking has become an issue. The major issues I am going through are rigidity and stiffness in my lower back, Shoulder, and neck.
Rigidity and stiffness in my lower back, ... - Cure Parkinson's
Rigidity and stiffness in my lower back, Shoulder, and neck.
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toronto1972
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Along with my prolopa I use an exercise bike with moving arms. May invest in a rowing machine.
High intensity exercise helps slow it down. I was 46 when I was diagnosed nearly 20 yrs ago and I'm still moving! I even did 9 holes on the golf course last week while on vacation.I go to a gym called Rock Steady Boxing. It's strictly for PwP's (Person with Parkinson's). If there's one close to you, please try it. I
I've been going since 3 months after they opened back in 2006. They now have over 850 affiliates all over the world. Here is the website: rocksteadyboxing.org
The earlier you start the better. Oh yeah, it's non-contact boxing plus lot more. 🥊
I have osteoporosis. The RSB I went to had people punching bags . I'm a little concerned about causing more damage . I have a compression deformity at L2. They told me I had to have a release from a doctor. Your thoughts. Thank you
Is the osteoporosis related to having Parkinson's? Has the doctor done anything to treat the osteoporosis? I have a friend who had treatments involving infusions but they do worry me. Another friend who had an issue with osteoporosis used a program that improved her bones that involved a combination of supplements. The doctor did xrays and her bones had improved. Most common knowledge seems to say this is not possible. I can understand your worries about some activities
Could you tell us how or what supplements your friend used to improve her bones please? Thanks
calcium and magnesium in balance,zinc, boron, k2, D, potassium, silicon, and being careful to avoid all sources of fluoride - water and toothpaste and no table salt and she took organically bound trace minerals
Not sure what you are taking for supplements but for bone health I take Vitamin D3 plus K2 (MK-7 form). Many folks are unware that the K2 helps get calcium on the bone and that Calcium and D themselves don't do it. Calcium Lactate is water soluble and pH independent so it is a very well absorbed form to take. You might also want to consider Silica, Strontium and Boron supplements too. I am in Rock Steady Boxing and find it very helpful. My neurologist says I have shown improvement in my PD by doing RSB. My affiliate has us do other things besides boxing. There is a lot of PT activities as well as fine motor skill activities.
Yes, you do need a release from your doctor. I would talk to your doctor first especially if you have a bad back. As far as causing more damage, the boxing will not cause damage. Go to the website and check out the testimonials and/or watch some of the videos. Everyone loves it.
Thanks
I am glad that you are doing well.
Are you able to drive? Do you walk with cane? How much medication are you taking?
Thanks! I still drive and I do not need a cane or walker. My "on" times are only 3 - 3 1/2 hrs and they used to be 4 hrs.
The meds I take are:
5 -6 C/L 25/100
1 Azilect
2 Gocovri at bedtime
1 20mg Lexapro
Gocovri is very expensive but they gave me a discount to $20 per month until I turned 65. I turned 65 in August if they're still letting me have it for $20 a month. The lowest price I could find it was $3592.00 per month. I don't think too many people can afford that. I can't so I'm not sure what I'll do.
Gocovri is basically Amandatine at a higher dose and it's extended release. Respectfully, 100mg vs 274mg. I have been sleeping better since I have been taking it. I'm not sure if it's a coincidence or not.
Let me know if you have any other questions. Let me know if you find a Rock Steady Boxing near you. 🥊
thanks a lot
One thing I believe helps me and I think some other people on this forum take it and that is Emergen C. A few yrs ago, I had terrible pain in my thighs and groin area. I had it for around 2 or 3 months. A friend told me about Emergen C and it took about 3 weeks but it helped. I still take it most days. If I miss 3 days I can feel the pain starting to come back. 🥊
I've used that also after I take a sauna. Replaces electrolytes and minerals and vitamins.
Chiropractor helps me. I have also been trying Tai Chi. Hope that helps.
will try for sure
I was diagnosed at 46 and at the time of diagnosis had received treatment for a rotator cuff injury (cortisone injection) which had helped with pain but I still had a lot of stiffness, and had also suffered on and off with low back pain, sciatica and femoral nerve pain which was later diagnosed as spinal recess stenosis. At the time I happened across Bowen therapy and didn't expect much from it but was persuaded to give it a go. I was amazed at the results, brought back full mobility in my shoulder after 2 sessions and really helped my back. Definitely worth a try if you can find a therapist nearby.
Have you tried 'Fast Walking'? Don't think that your aches and pains will stop you from doing it. Using all your muscles helps them to recuperate.
What are you doing rainy days? Difficult to walk in the mall during the day.
We don't have many rainy days, but I have a knee-length lightweight waterproof jacket that I can wear in winter or summer.
Same exact problem that I have, watch the video and give it a try. IMO, is all about training different part of your brain to control your legs. I also force myself to walk and run slowly on treadmill, but be extra carefull ( have the stop button ready ) m.youtube.com/watch?v=Lohzw...
great video
Have you seen High Dose Thiamine Therapy that gets mentioned here a lot? Seems help many people.I'm still working on it. Not sure whether I don't know how to do it or it doesn't suit me because I haven't found relief from high or low dose.
K
Hi there. The wonderful people on this site will no doubt help you.
My understanding is that sometimes, some people need to take minerals to enable the B1HCL to work. I think it is called refeeding syndrome
I take a good quality multi mineral/ vitamin supplement for this purpose.
The two experts are Dr Constantin who used B1 injections in his clinic. When word spread and he was receiving requests for information from people who could not travel to Italy so he developed treatment using pills. The other person is a Dr Longsdale who I believe is widely known for his treatof Beri Beri using B1. Whilst we do not have Beri Beri there isa lot of very useful information in his articles.
Hope this is of help. There are quite a lot inf on this site
Thanks. Have you got links for Dr Lonsdale's articles re B1? Thanks
Hi there, It is a while since I researched this. I would like to think that I kept the articles When I feel better I will have a look for you
Hi there. Just did a quick search on here.
This might be a good place as any to start. ‘Managing the side effects of Thiamine Supplementation : The Paradoxial Reaction’ posted by Kia17 I have not watched the video but lots of excellent interaction by the forum members.
Also realised that I have spelt his name incorrectly.
Best of all wishes on your journey
well you certainly hit a rich vein of advice. I am in a similar position. My residual issues of any real importance are stiffness of the lumbar and neck regions. I don’t think they are going to be touched by further medication but life is made bearable by regular strenuous physical exercise including cardiac, plenty of stretching, weights, leg muscle strengthening and boxing. Practice good posture and steady deep breathing and try to keep stress at bay as stress can undo the good work. I find physio gives temporary relief as last resort. I found that adding amantadine to my drug regime of C/L-dopa and Ropinirole helped with gait. I also agree with previous endorsements by others of B12. I am just grateful that my problem symptoms are manageable. Others are not so fortunate.
Aim to follow as many of these advises as possible. Also eat enough, including ENOUGH proteins (NOT much protein). Take a multivitamin treatment to better support yourself. And don't forget omega 3. Number 1 though is exercising. Exercising enough (again, not too much), aiming for 150 min of intense exercising and 150 min more relaxed, shall improve your body response to Ldopa.
Powerforparkinsons.org are great.
I was also diagnosed at 45, in 2015. I'm taking for several years 600-700 mg. My situation should not relieve you. Nevertheless, it's 97% stable .
Seek to have your mind at peace as much as possible Make sure you sleep.
I have the same symptoms plus tremors. I found the combination of Rasagiline, carbidopa/levodopa controlled release and gabapentin worked best for me but I experimented with lots of combinations before landing on this. I also found for me protein really conflicted with the effectiveness of the drugs. I follow an intermittent fasting protocol to address many issues. I also pretty much follow a Wahl’s diet (ish) - no sugar, no dairy, no gluten and 8 to 10 veggies a day. I have also found exercise is mandatory for me. I know I had Parkinson’s when I was 45 but I was diagnosed at 55 and I am now 63. Also, Canadian from Vancouver. The first year is the roughest. All the best and I hope you find somethings that work for you! Cheers!
Lots of great suggestions here. Í to have back issues. Two things that helped me: get to the gym. Start a program under the supervision of a trainer if possible. Two: somewhat to my surprise, acupuncture worked for me in relieving pressure in my upper and lower back. Good luck!
(Canada) As my husband has signs of Parkinsons and wishes to address this issue naturally I recently received a vibrating plate. Note: Due to knee problems his physical activity is limited. I am impressed with the EILISON FitMax KM-818. There are a variety of exercises and settings benefiting improved balance, postural control, increased bone density, muscle growth, etc. Have found vibration very helpful in releasing tension in tight muscles.
My husband bought a vibrating plate. It's supposed to be excellent for bone building for people with osteopenia and osteoporosis. It's also supposed to be good for lymphatic drainage and detox. Looking for information as to the benefit for Parkinson's. Any advice thank you
HI. I AM ON THE HDT REGIME 3 GRAMS PER DAY SPLIT 50/50 BREAKFAST AND LUNCHTIME. I HAVE ALSO HAD REIKI TREATMENT AND BOWEN THERAPY FOR MYBACK AND HIP PAIN. VERY SUCCESSFULLY I MIGHT ADD. JUST STARTED ON A COURSE OF EFT (TAPPING). I FEEL SO MUCH BETTER AND LESS STRESSED. WORTH A GO!!
What is EFT tapping? Thank you
The best is to keep moving as much you can . REGULARLY,,,!!
Hi, I will recommend Juice Fasting. First, do research about it and find what the best for you. I mean how many days you will fast and prepare for that.
I would see a chiropractor. In addition, I would check out trigger point therapy (use a lacrosse ball), cupping and foam rollers.
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Are some or any of the Alternative Therapies beneficial in relief of PD symptoms 
PTT - Pallidothalamic Tractotomy
I have the same symptoms and no tremors. I know it isn't an alternative treatment, but carbidopa levodopa works well for me in addressing back and shoulder pain and rigidity, among virtually all other symptoms.
How much c/l do you take? I take 1 25-100 every 8 hrs. It isn't helping my tremors.
I take one 25/100 carbidopa levodopa 4x per day. Usually one pill at 8 am, noon, 4 pm, and 8 pm.