Freezing getting worse

[Rubiron]

Hi, my HWP was diagnosed in 2020 and is currently not on any prescribed meds but does take Mucuna twice daily, also he is following the HDT (B1) therapy with some small success thus far. My question is about the increased amount of freezing he is experiencing in the last few weeks, particularly at night when trying to get out of bed and even walking through the door of the bedroom. Has anyone experienced similar and have any tips or advice. Many thanks

[bigl62]

I tried lots of different things. The only thing that helped was carbadopa levodopa

[cgreg in reply to bigl62]

I have a similar experience. I tried to deal with my PD for several months without meds until I could no longer tolerate it. I have discovered that the correct dose of CL is the most important part of my regimen (e.g. Exercise is very important but it is impossible for me to exercise properly without CL medication.)

[Rubiron in reply to cgreg]

Thank you for your reply. Could I ask, what side effects have you experienced on CL? I believe that worry is why my husband is resisting taking prescribed meds.

[cgreg in reply to Rubiron]

I have not experienced any side effects from CL.

[HugoRipanykhazov]

I can understand your hand wringing about the side effects of sinemet. Lots of Americans worried about the side effects of the covid vaccines enough to evade getting vaccinated. Lots of those people eventually experienced the main side effect of not being vaccinated. The main one is incipient death.

The main effect of sinemet is that dopa replacement prevents things like freezing. It may be too late to benefit from that once freezing has started. But at least he didn't suffer those side effects!

In my case, there weren't any.

It is a bit surprising that you would admit in a public place that you were more worried about largely non existent side effects than you were prepared to benefit from the replacement therapy?

[Rubiron in reply to HugoRipanykhazov]

Firstly it’s my husband not myself who has PD, and I merely said that he has been reluctant to go on medication as he is not sure of the side effects. The alternative things we are trying at the moment we have had quite good results with, I just asked a question about freezing.

I’m glad you have not suffered any side effects yourself

[Despe in reply to HugoRipanykhazov]

"The main one is incipient death." REALLY??? How about the thousands of people who suffered the consequences of COVID vaccination? Have you read the statistics? Especially for young people who died as a result?

[HugoRipanykhazov in reply to Despe]

No, actually I hadn't. Can you point to even a single news report ify this being so widespread? (Ñot including the voices Donald Trump hears when he wants to make something up)?

[Despe in reply to HugoRipanykhazov]

You will get no answer for your political comment.

[HugoRipanykhazov in reply to Despe]

I didn't expect any. People here are more concerned with things to do with PD than with how easy it is to feed you misinformation about vaccine's efficacy and how "thousands" of people may have got slight sniffles as a result of some kind of (non pd-related) vaccine.

[Zscaleplanet in reply to HugoRipanykhazov]

And what about all those dying because of the "death-jab"? Ohhh, that's right, there were no side effects, heart attacks, young atheletes world wide dropping dead, and individuals being diagnosed with all sorts of maladies -- including PARKINSONS !!!

My primary care physician took the "death-jab" as he was expected to do --- instantly got short term memory loss for a period of time and told me he'll quit his job as a doctor before he takes another. And to quote my urologist -- "I am dissapointed in those in my profession because of the fact we did not stand up against the shots".

But I am confused in your response too, because in the first sentence you acknowledge her hesitancy about the side effects, yet then sarcastically respond at the end of the second paragraph ridiculing her husband and his concerns.

Then in the last paragraph, you belittle her for even getting on the forum in the first place seeking advice.

Her husband is blessed to have a caretaker such as her !!! Appologies are in order to her first, and her husband second.

And leave your political idiocy off of this forum. Everyone has been pretty good about avoiding politics.

[HugoRipanykhazov in reply to Zscaleplanet]

Yes, everything was apolitical until you came along. Misinterpreted my words along the lines of your political beliefs.

As I am not actually American, it never occurred to me that whether one believed in vaccines or not could be a

Political thing, as in People who live in Democrat states take vaccines and know that they will work: whereas people who live in Republican states pretend that they don't so. And invent the Statistics to support their beliefs.

Where that starts to jar a bit is when you do this sort of thing on a HEALTH related forum. Where readers tend to be interested in health matters. Where it tends to be a bit obvious that you are bending the statistics to support your political beliefs.

No one here is interested in learning that you hold the political belief that people are dying like flies from taking some harmless vaccine.

[Zscaleplanet in reply to HugoRipanykhazov]

Nice attempt above to dodge the obvious fact that you owe both this brave caretaker and her husband an apology.

[HugoRipanykhazov]

We'll I can certainly understand not wanting to suffer because with sinemet you are Not Certain about those side effects. Let's hope your alternative proposals have more certain side effects. Good luck!

[lovelabretrievers]

I have also delayed taking medication. I was diagnosed about a year and a half ago and the first neurologist I saw did not recommend medications as she said they eventually stop working and therefore it is better to wait as my symptoms were mild. She was older and retired less than 6 months later.

It took me a while to get in with a new neurologist and in the meantime I decided to take nicotine as it has been shown to be neuroprotective. I have taken 12 mg of nicotine gum for 8 months. Has it done anything? I don't know but I have noticed little to no progression. My main symptoms are weakness in my dominant hand and stiffness on the same side.

I have since seen 2 much younger neurologists. They both were against nicotine ("do no harm") and they both said current thinking is that there is no reason to wait on medications if you have any symptoms at all. I now am thinking about starting on Sinemet, especially as my stiffness is getting a little worse. I also would like to hear what side effects others have experienced. For now I plan on continuing with the nicotine as the medications are not known to be neuroprotective.

[M-o-ggy]

There seems to be a number of people who have been diagnosed, perhaps still go to work, still ride a bike , chosen.not to take med ic cation How do you do it. By the time I was diagnosed I could hardly walk, didn't lift my leg.high enough, had massive sweats similar to hot flushes and was immensely tired. On the screener for 'tiredness each question scored a full mark. My lower back was very painful, and my left hip was very sore and painful and the joints were to big for me to wear a ring. Because the NHS couldn't help me I went to a Chinese Dr. She solved the prob if the hip and varied smaller problems. She said that I had so many problems that she could not solve them all at one time. The other hip started to cause pain and the tiredness was increasing so I went to the G P again .

I used every crumb of self discipline that I had

When I was diagnosed the Dr examined me, tested reflexes etc. At the end of the appointment I sat at the opposite side of the desk. He noticed that my left leg was shaking. Hardly noticeable and didn't cause any pain and only really visible when I was anxious. He asked me to write a short sentence three times

That was the beginning of the journey.

In retrospect the first signs ,(emotional labality) were noticeable some 15 years ago but who goes to the doctor for something like that.

When I started Sinimet each tme I came nearer to taking the next dose I could feel the energy slipping from my body. I would sit there so that I could take the pills at a moments notice.

After the diagnosis my Dr apologised . She didn't know that hit flushes were a Parkinson symptom and had assumed that it was lingering effects of the change even though I quite clearly said that the hit flushes bad stopped for about 2 years .It seems that it had not been put on the referral letter.

I have to say that these days I have copies of everything

So after that long missive I would say that I am.happg for you all and happy that you have been diagnosed so early in your journey

Congratulations you must have some very switched on medical support

Typed on my phone so many errors

[HugoRipanykhazov in reply to M-o-ggy]

Yes I have always suspected that that would be the progression if you didn't start sinemet fairly early. That was why I asked why suferers CHOSE not to go on the medication until it was too late. When you started, did the symptoms alleviate immediately? Did any of them disappear?

I must say that it sounds to me as if you would benefit from physiotherapy? That helped me get rid of most of the symptoms you seem to be suffering from. P the only problem with physiotherapy is that you have to have a good physiotherapist who can monitor your reactions to whatever he or she is prescribing and adjust the physiotherapy continuously throughout your course of treatment .

[M-o-ggy in reply to HugoRipanykhazov]

Hi there. The effect of the Sinenet was amazing and for some years I was symptom free taking 2 capsules every four hours and 1 cr at night. Gradually some symptoms have altered. Today - Now my joints don't hurt, the excessive tiredness is no more. I don't shuffle and don't sweat excessively. I have to consciously think about lifting and bending my left knee if I don't ,then I have difficulty turning right without tottering, my voice can become very quiet if I am in a group, my mouth sometimes becomes dry when I talk, I control a tendency to constipation through various herbal supplements, the coughing is controlled by NAC, a few years ago I could not walk without 2 sticks and use them heavily but at the moment I can manage with one at home, I can now walk down the stairs without going one step at a time and following the protocol of using essential oils, I realise that my sense of smell is recovering after many many years of not having any ability to smell at all

The essentials for me is the Madapor, the B1 hcl, NAC, Palmitolethanolamide, D3, coconut oil and saccharomyces boularddi PLUS.

My biggest problem at the moment is control of my left leg/knee and the tottering that it causes