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.

[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 .