ARE YOU A NON TREMOR DOMINANT,BENT OVER,RIGID,UNBALANCED,SHUFFLING PD PATIENT? PLEASE HELP!

[OREOLU]

Hi friends, If you answer yes to the above question,your advise will go a long way to help me.The above symptoms are actually what I have been experiencing lately when I am off my C/L I was diagnosed roughly 3 and a half years ago,but probably been having PD for more than that. I am in my mid 50s. When I am on,I feel about 70% better,upright,no rigidity,no shuffling,less problem with balance,but usually fatigued.Please, kindly let me know all that works for you,in terms of sleeping ,and if you still drive and work. A big thank you in advance.

[JohnPepper]

Hi OreoleU. One thing at a time. You need to understand how Pd works. It attacks an area of the brain that controls our subconscious movements. You walk subconsciously and you stand erect subconsciously. The fast that they give you problems is no cause for concern, because you are able to consciously control both of those actions.

If you treat Pd as a challenge you are already half way to overcoming it. If you don't and you give in to all your problems and expect medication to be your savior, well, think again. There is no Pd medication that was ever designed to help you overcome your Pd. You will continue to get WORSE, even though you are taking medication.

Let me know if you are prepared to start taking action to get out of that spiral.

[OREOLU in reply to JohnPepper]

Hi JohnPepper, I know about your recommendation about fast walking.I have read some of your postings here,and I am already doing fast walking exercise.

[JohnPepper in reply to OREOLU]

How is it working for you? How many minutes do you walk, how often and how far?

[condor39]

I have the same symptoms, but started four years ago at age 82.

I respond well to a high dose or Madopar 25/100 three tablets four times a day.

No side effects and no supplements at all.

I still have fatigue, and cannot walk for more than 15 minutes. Also some freezing, which is annoying, but I can manage,

Good luck, and do not worry about side effects, they are unusual

[OREOLU in reply to condor39]

Hi Condor39, thanks for your input. Unfortunately I had a young onset diagnosis. At such a high dose of Madopar,are you able to sleep well?Do you still drive? What do you mean by side effects are unusual?

[condor39 in reply to OREOLU]

I slowly worked up to this dose of Madopar under supervision(Actually I take Proplopa which is the Canadian version, but the same), I sleep fairly well - I wake up at about 3,30 am and shuffle painfully to the bathroom , this improves after awhile, so may be arthritis, then instead of going back to bed, I go to a LazyBoy type recliner, watch TV or read and doze on and off. At 7.00 am I take the first dose so by 8.00 am. I can walk better. I have slurred speech.

I drive, I think well, I know we all think that!

There is no way I can do fast walking, but my condition is liveable. I should not compare myself with your early onset PD, I have always been very active. At age 68 I sailed around the world in my sailboat, taking two years. I am now retired, I am a physician, but I take my advice from a Movement Disorder Clinic - certainly not from a website. The clinic sees several thousand patients with PD a year, so they have vast experience.

As for side effects, I sense that many are afraid of treatment because of fear of side effects, but the majority of people do not get serious ones at the usual doses. I did have mild dyskinesia, but that seems to have stopped.

I can sympathize with younger people with PD who get desperate, and try all sorts of supplements, convincing themselves that they are being helped.

The best we can all do is to press on, enjoying each day as best we can.

[jimo2017 in reply to condor39]

thats the posts i like to read,encouraging my main prob is the lower back pain together with the stoop but age wise iam 84 i suppose some of the problems could be age related

[Dmr65]

Hi Oreolu,

I’m 55, diagnosed 6 1/2 years with non tremor PD. I too struggle with gait and balance particularly as well as the other usual suspects and to be honest the only thing that helps (apart from the LD which helps the symptoms) is exercise EVERY DAY. I ride my bike (both static and normal) every day and the effects are dramatic for me.

I sill drive, ride,run, ski (badly) function and manage to work as well as socialise and have a few drinks although I have found that I have a more difficult day post alcohol than normal and the effect on my walking is marked.

I’m on 500ml Madopar and 4 ml Ropinirole and have actually reduced the ropinirole over the last 2 years.

My sleep is inconsistent but I find that napping keeps me fresher and more functional. Overall I’m not unhappy with the progression.. walking in off periods isn’t easy but you learn little tricks that work for individuals like tossing a ball from hand to hand when walking and also lifting your big toe before every step

I hope you this can help in some way but hang tough

David

[OREOLU in reply to Dmr65]

Hi Dmr65, You are doing really good,according to your post. It looks like you take less Madopar at 500ml.It is good you lay much emphasis on exercise.I do exercise too,but currently,I am only able to run and do fast walking,due to the Covid 19 lockdown and Gym closure. I will get me anther stationary bike.I do have one ageing bike,which is now very noisy. I also nap and like you said,this really helps to refresh me. For my sleep,I use mirtazapine and occasional 2.5 to 5ml melatonin,but these only helps me with 4 to 5hrs sleep.As per progression, I am not sure it is slow,because just about 4wks ago,I increased my C/L to 25/700mg from 25/500mg plus half,and I felt like my off periods got worse,most especially getting out of bed at night to head to the bathroom,has been a struggle with walking,cramps,stiffness and balance. I am not sure if the symptoms increased in intensity due to my increase of C/L ,or it is the progression of the disease.Thank you for your detailed insight. It is really tough,when you are a young onset Pwp. I don't have any choice than to continue to fight it.All the best,my friend.

[albachiara2 in reply to OREOLU]

Anche a me è venuto il dubbio di un aumento dei sintomi correlato all’assunzione del madopar. Prendo 3 mezze compresse da 100/25 nell’arco della giornata

[condor39 in reply to Dmr65]

I am not familiar i with Madopar 500ml. ??????

[OREOLU in reply to condor39]

I guess the question is for Dmr65.

[Dmr65 in reply to condor39]

4 x 125mg

500 pd

[jimcaster]

Hi, Oreolu. I began taking melatonin a couple of weeks ago about an hour before bedtime and it helps me fall asleep faster and stay asleep longer. I agree wholeheartedly with Dmr65 regarding exercise. To the best of my knowledge, exercise is the only way to slow the progression of Parkinson's disease. Use Google or the search function on this site for more specific information. I pedal my stationary bike at a minimum of 80 rpm for 2 hours, 4 days per week. Good luck!

[OREOLU in reply to jimcaster]

Hi jimcaster, I am already using melatonin sparingy,because I read online that,it is best not to use it on a long term basis.It has worked for me when I use it for say,2 to 3wks,then stpp for a wk ,and then continue.I really wish that I can get up to 8hrs of sleep.,in as much as I want to avoid drug sleep dependency.I do exercise daily,by running,walking and lifting weights.I appreciate your input.Thank you.

[rideabike in reply to OREOLU]

I take 5 mg melatonin extra strength every night. If you want to try a substitute the amino acid L- theanine 225 mg works very well. Ashwagandha (herb) 400 mg is also helpful before bed. If I wake up another great relaxer is Magnesium bis-glycinate 200 mg...sits beside my bed with a glass of water. I take it every night because almost without fail I will wake up. There are a couple of others. I started with

L-theanine and was surprised how much an amino acid could be relaxing. Then I added a few others. No drugs! Take care!

[pmmargo in reply to jimcaster]

you should really check out ZWIFT.com since you are spin biking that long. It helps keep you entertained while biking at home. Best Wishes Paul

[jimcaster in reply to pmmargo]

Thanks! I'll check it out.

[Dajudge]

I take a healthy dose of melatonin about 1 hr before bedtime and it seems to aid my sleeping.

[OREOLU in reply to Dajudge]

Hi Dajudge, how much sleep do you get?And at what dose?

[Dajudge in reply to OREOLU]

Usually 7---9 hours.

[OREOLU in reply to Dajudge]

Wow,that is fantastic, what mg melatonin do you take? I wish I can sleep like that.

[PalmSprings]

Hi, my experience is very similar to Dmr65 (David). I was 55 when diagnosed, 5 years ago. My symptoms were identical to his. I found that exercise to be crucial to how I feel. I do take l/c, rasagiline and gabapentin (for the neuropathy issues). Lately, I have been doing the dynamic dosing to suit my lifestyle. My first dose is at 10 am (2 hours after I get up) and last dose is at 11pm (right before I fall asleep). I found that this gives me the best sleep. And I also discovered that I can not drink as drinking plays havoc with my sleep. So by trial and error, I am finding my optimum. But I am still thinking about tweaking as needed. Hope you find your right balance! Christie

[OREOLU]

Hi Christie, what type of neuropathy issues do you have?And does Gabapentin help? I also have neuropathy on my left side,but it is usually when my drug is wearing off,or when I am sleeping and completely off at night. C/L actually helps to stop the neuropathy,when I on.The neuropathy helps me to know that I am off.Thanks for your input.

[Dajudge]

Ihave no tremor but my balance is non existent and my doseage of melatonin is one or two 5 mg dissolved behind my tongue.

[OREOLU]

Hi Dajudge,thank you for your contribution.