My walking has gotten bad over the past month. nothing has changed re: excercise, eating habits, meds, (my MD wants me to try segeline this week) it's like I woke up one day and I am having freezing and gait issues. My off times are for hours, I crawl, use furniture, scooters/walkers I have been using/
what is going on?
same here i try to get used of it
I will not get used to it..to many advances and tx in the pipeline, just can't wait that loong for FDA approval
If you aren't already using B1, you might give it some consideration :
healthunlocked.com/cure-par...
Art
I have,..maybe try again?
Buy Daphne's book from Amazon: and keep on keeping on
Parkinson's and The B1 Protocol.
Also join the Facebook Group as there's lots of help from members: Parkinson's B1 Protocol
How much to start again?thx
This was Dr. Costantini's approach to dosing :
healthunlocked.com/cure-par...
You can also try Daphne's approach to dosing using thiamine mononitrate for which she has a book available on Amazon.
Art
This happened to me recently just before a trip overseas. Suddenly I am freezing, shuffling in a way I have not done. I have never known my symptoms to progress so suddenly. So I would be interested myself.
ALL i know it sucks!!!
I can't argue with you on that! 👍
The serlegaline has prettu much wiped out my freezing and bad gait. (only been on med for 5 days) I actuallt drove myself to store and want inside store myself ...wwhhhwwhho😀
PD doesn’t usually change suddenly. Wonder if there might be something else going on?
Wierd, as like all the sudden, mostly after I take the 20mg apomorphine, I SNAP out of it, walk normal and time varies 20 minutes to 5 hours I am "normal?" walking etc
I SNAP out of it from 30 min to 5-6 hours? USUALLY after my apomorphine. all this started a month ago.
My expieriance with PD has been that it does not change at some slow methodical rate but instead one day I would have a very bad day and then quickly realize that is the new normal. Then the amount of change started increasing and the time between bad days started decreasing and it has gotten to the point that I am now walking by moving from holding the back of chairs and I can not walk for more than 100 yards without a rest sitting on my wheeled walker. It was not the case last Christmas so 6 months and everything changed. Suddenly ? is a matter of perspective .
I have so many devices, u-step, rollators etc. but I can't use "comfortably" and it gets tiring. When I use, my legs end up behind me and me on my tip toes
My neurologist warned me recently "Whatever, stay off your toes. It is difficult, I know.
when hubby has had setbacks they have been caused by
Change / increase in meds
Other illness/infection
Some new anxiety inducing event eg a holiday coming up, a misbehaving teenager, a tax return due
Change in seasons - less light, long winter days, spring allergies, too much heat
Have you had any of these?
no...it's like my brain is not connecting with movements.
Hi, I notice this too...My husband was doing great 12 years in, exercising, gardening, physical labour, added family stress and bam, trouble walking all of a sudden, can't get his gait in rhythm. It seems like any change in routine, especially sleep, could trigger an off period.
Stress of any type certainly makes PD much worse.
I’m wondering about the changes in the dynamics between sun and earth, cme’s’’s, pole shift, aseismic, volcanic, magnetosphere, auroras etc
Maybe I need a lobotmy? Ha ha
Your sense of humor will go a long way. Edit everything you take in. My husband started using nicotene gum with his regular PD meds, which really helped his focus, fine motor movements, motivation, etc...
A friend mentioned that 2..the gum. Will try. In fact tomorrow. What do i have to lose.
Exactly....4mg one piece of gum made a difference for my husband almost immediately. He tried the patch too with less results, not sure why.
Has your brand of meditation changed? Just had a bad month of symptoms using a different brand of my usual meditation and now back on normal brand feeling much better
The "fillers" which are used in medication sometimes react on people differently. My husband refuses to use generic brands of any medication.
Fillers and no conformances for mfgrs to follow allows these new cheap mfgrs put in whatever they want. A big issue very little know and nearly impossible to address and fix due to big pharmas gatekeepers.
Red light therapy.
I have infared sauna blanket, used cryotherapy, vibration....
How did you find the infrared sauna blanket? One of my doctors wanted me to detox using infrared sauna, but I can't handle heat very well and worry that I may faint and fall.
Amazon. Price ranges all over. I got mine for 80 bucks, temp 136-176. Tolerable.
Thankyou. I will check it out.
Vielight or red and nir light panel.
Example: took my Rytary etc. Fully functional 3-6 AM, was going to workout, downstairs, no gym for me, now 6 AM, can hardly walk. WTF???????
Are you taking vitamin B6. If yes, how much and for how long. Sudden deterioration is sometimes due to either B6 toxicity or deficiency
I just took B1 2 hrs ago, 300 mg..starting up. I am going to take 20 mg apomorphine to get me out of this funk. i am getting my new med today, segeline. Crossyour fingers
I have had PD for 14 years and when I first took selegiline it did help. But only a couple of years. Then I started having great difficulty walking , particularly in the morning. It wasn’t until I had DBS surgery in January of 2020 that I really improved . Have you considered it? Scary for some, but I had great faith in my doctor and very ready to go for it. It took several months to get my settings right, but it’s made a huge impact on my quality of life! Good luck!
Thank u. I 2 AM 14 yrs in..54 y/o now.
My husband had worse walking in February this year and they found it was due to constipation. He had an enema and now has to have laxatives daily, this made his walking improve. Apparently the toxins from not going to the toilet enough made his medication not work as well. He's on madopar.
HMMMMMMMMMMMMMMMMM....I take Metamucil. YES, THE GUT is a big culprit.
another time in 2022 when he couldnt walk an d was crawling he was low in potassium (blood tests in A abd E found this out) so he had a 3 day course of potassium tablets prescribed and was ok again.
I HATE crawling!! I just bought knee pads, elbow and wrist pads... and a helmet. I told my bf I have a new summer outfit..i think i scared him.
yes my husband has knee pads but doesnt use them much. He hasnt had to crawl for a while. He is taking tissue salts kali phos and calc fluer, (homeopathic) they made his movement improve for getting on and off bed and chairs, he was getting stuck (freezing) before he took those and resorted to crawling to the loo so he's get there in time but now thats improved a lot.
check out Wael El-Nacef on michaeljfox webinar on constipation protocol. Sometimes Metamucil makes it worse. Medication might not be getting through. Good luck.
These PD “surprises” are so fun aren’t they?! I agree with or have had similar issues and results as others have mentioned here.
Generic C/L does vary in how it works, this is the only PD Rx I’ve taken. I’m about 10 years post diagnosis. I’ve had certain brands not work well at all or individual pills work/not work. My insurance only covers generic and I’ve had to ask the pharmacist to get and/or use a different brand They are/were mostly cooperative.
I think any negative stress or anxiety, especially chronic or underlying situations can cause symptoms to suddenly worsen.
I think crawling, yoga, qi gong, dancing or fast walking (with exaggerated arm swinging if you can), or other activity (that you hopefully enjoy!) so arms/legs are doing something different simultaneously can help reset your body.
Being around friends, family that you are comfortable with and laughing with, enjoying meals, conversations or activities makes a big difference for me. Negativity and chronic stress takes me down fast.
It sounds like you have a lot of PD “tools” at your disposal, including a vibration plate but you might consider taking an off road jeep/dune buggy ride as this kind of whole body vibration and jostling could help, and it’s fun!!
Have you tried grounding? Getting barefoot and walking on wet (unsprayed) grass or along the beach with your feet in the water, or just in the dirt (damp is best, and make contact with your feet and the earth directly). Hug a live tree with skin to bark contact works also.
The fiber thing is important! You have to be going regularly, if not the stuff that should go out stays in too long and your body can re-absorb toxins instead of releasing them. Not good.
Good luck!! Hope you find something helpful to bring you some relief in these posts! Keep us posted!
Yes, I have a grounding mat..don't really use. Or "tilt a world' ride, maybe the next time a "carnival" comes to town I'd try that. 🙃🙃There seem to be so many good things to come but not FDA approved or in the UK is available. I did see a "mountainneer" train ride from Utah-CO. THAT would be "Jolting/"
tilt
😂 Not sure about the tilt-o-whirl ride, although I did like it as a kid! I think it would make me really dizzy now. A Rocky Mountaineer train ride could possibly do the trick also! And what a beautiful ride it would be! Activities, thoughts, experiences, etc that give you/us pleasure releases dopamine in our bodies, and we PWP's definitely need more of that!
I moved away from Colorado a few years ago, not sure when they started those RM cross-country train rides - I don't remember them, but the Durango-Silverton train, yes, and the ski train from Denver, west to the ski areas, so fun!!
I have a grounding mat also, and a grounding sheet that goes on top of the bottom sheet but I never noticed anything from using them, although some people have dramatic results. Mine are both in a box somewhere and I haven't re-discovered them after moving. I think it does work to do as I said earlier, walk on the beach or wet grass, or stick your feet in a creek. I went to a medical hospital on Baja, California-Mexico and they had beautifully landscaped grounds with grass, flowers and a vegetable garden, all maintained without chemicals of any kind. Walking barefoot in that damp grass was highly encouraged, and it felt so good! It wasn't rocky, there were no weeds, no stickers.
It needs to be live moving water, from a spring, a creek, the ocean, etc not the water in your shower, unless you are outside with your feet on the ground while showering! (and your can't fill your tub with this live water, although good, it won't have the ion exchange that's necessary for the grounding effects. Supposedly, grounding like this immediately after a flight across time zones helps you recover from jet lag quicker, so I would expect it to be beneficial for PWP also. I'm pretty sure I've never had the luxury of getting off of a flight right on a beach or near a patch of wet grass so I can't vouch for this helping or not! The cryo-therapy ice cold water plunging that has become popular is supposed to be beneficial in many ways, and it's grounding if you're in live water. I have a hard enough time turning my shower to cold much less jumping into an icy cold lake or ocean; that is too much for me!
If something works and helps people FDA won't approve it, especially if it won't be a money maker. If it makes Big Pharma, and doctors money, and keeps us as customers, they'll approve it. Just look at cancer and heart disease, ridiculous prices for drugs, tests, treatments and the facilities, and people mostly die anyway, the numbers haven't really changed with all our "modern advances". Sadly, it's a business, not health care. I'll probably get censored and banned from HU for saying these things, or if you're a cardiologist, I've likely just ticked you off!! 🤐 Pun intended!! 😂 It's just my opinion, not meant to offend anyone, but I do wish we had health care that was geared toward actually trying to heal people, not just make a profit. Stem cells, vielight helmets, EBOO maybe, for PD for example, there are many things out there with promise. Let's put $ where things are possibly working and show potential. I realize clinical trials are expensive and take a lot of time, research and effort, it just seems like the wrong things are prioritized or we waste research money beating a dead horse.
Despite the valid concerns you have raised about the shortcomings in the US healthcare system, it is important to acknowledge that medical advancements have indeed contributed to a remarkable increase in life expectancy.
In 1900, the life expectancy in the US was approximately 49.2 years, whereas in 2018, it had risen to about 78.9 years. This represents an increase of around 30 years.
As evidenced by the research cited in the link below, it is estimated that with a healthier lifestyle, the current life expectancy in the US could have been even higher by an additional 20 years. This suggests a potential life expectancy of nearly 100 years!
Agree re: big pharma. They stopped "making' the sublingual apomorphine, which works like a "charm" for me..MD said patients were not using sublingual form, so they took off the market. My neurologist is awesome and stockpile me with a "bunch." We need to look into Eastern medicine and not all these meds.
I've found that indoor bicycling on a spin-bike has been of great benefit for my overall condition.
Do you consciously control your walking movements or do you continue to subconsciously control them, as you have always done?
I have consciously controlled my walking movements since 1996 and have never looked back.
I don't take any PD meds and live a normal life.
Contact me if you are interested!
walking
Walking aids
Dyskinesia getting bad big movements 
Walking
Walking seriously affected. 
