I'm lost please help me : My name is... - Parkinson's Movement

Parkinson's Movement

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I'm lost please help me

Billynh
Billynh

My name is Billynh screen name and I've been diagnosed with Parkinson's and I'm having trouble finding people to talk to I'm 44 yrs old and I'm in advance stages I fall constantly and I have a constant headache with muscle pain and I want to find out if there's other meds I could be taking to help me

30 Replies
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Are you a candidate for DBS surgery?

98Rob asked if you were a candidate for DBS, if so, go for it. I had it in 2004 and it was the best decision I ever made!!! What meds are you on? You can always talk to people on this website.

I was diagnosed a little over 2 years ago and the symptom that go t me into the doctors was falling down stairs. I probably had PD for some time before that, as I had several other symptoms for awhile - just did not know they were. It then took 2 years to get a diagnosis. There are several different meds and combinations of meds out there depending on how you react to them. Your neurologist should be aware of what they are. If not, find a different doc.

that said, the things that helped me the most have been getting lots of exercise, especially aerobic, and physical therapy. The physical therapy helped me adjust to my loss of balance, among other things, so I do not keep falling down stairs. The aerobic exercise is the only thing I am aware of that actually fights PD, as opposed to treating the symptoms. I get it through race walking and running. I know this sounds odd for someone who falls easily, but once I get a rhythm going, I do pretty well.

As for the drugs - I am on sinemet (carbidopa-levidopa) and Mirapex and they help some of my other symptoms a lot (tremors, rigidity, sudden movements, etc.),including someof the muscle pain.

Working out and lots of stretching exercises helps reduce the muscle pain, as does rolling them out when tight during workouts. I also go to a chiropractor who helps with the muscles via adjustments, etc.

PD is not easy and depression is common, but you can learn to adapt to living with it.

Good luck.

Hidden
Hidden

The best thing to do is consult with your doctor or the neurologist

Although we are all here to help where we can and advise but when it comes to drugs it is always best to go see your own doctor who will prescribe what they think is the correct treatment therapy

I wish you all the best

Welcome to our group.I was diagnosed 2 yrs ago, had symptons for about 2 yrs prior. I was 55 at the time. I was diagnosed with ATYPICAL PARKINSONSISM SYNDROME. It has mostly affected my speech and muscles in legs, feet and hands. I find that by taking several short walks ( 1/2 mile ) several times a day helps...when the pain in my legs got almost unbearable....I had acupcture. It helped alot! Nothing seeded to help me sleep all night...was sleeping 3 to 4 hrs each night..started hyptnosis now I sleep 4 to 7 hrs each night. I am taking .375 mg of pramipexole er and 100 mg of amantadine on a daily basis.

I would recommend you see your general medical doctor at least once each three months and your neurologist at least once each 4 to 6 months and join a support group...I wish everyone had access to the excellent resources that the RTP area has in North Carolina. I prefer the doctors at the Duke Medical Center...

Billynh,

I have been on PD medication for 12 years but had symptoms for many years before just kept getting missed diagnosed. I have always been an active person, that is one of the reasons they had a hard time diagnosing me. the exercise really does help.

I have suffered over the years a severe tremor, debilitating muscle pain when I am off. I have had freezing spells, I have fallen, I cant count how many falls. My autonomic functions have been effected.

Finding the right medication mix that works for you is very important. along with the right doctor, you need a doctor that you feel comfortable with and I cant say enough about exercise. A physical therapist can help teach you strategies on how to keep your self from falling as much.

I have advanced PD like you. I was at the point that I could no longer drive. My medication was really only effective 3 hours total a day. The only time that I dared to leave the confines of my house to even go out in the yard was between 11am - 1 pm. I took my medication my cane water and a phone in case I got in trouble.

My doctor told me that I was a candidate for DBS, I was not convinced that DBS was for me!

My Doctor told me a few years back that there was a study that I might want to look at it was Carbadopa/levodopa intestinal gel. This has been used in Europe for over 10 years they call it duodopa. I have had really good results with this! I have very little off time, I am driving again. Life is good!

Billyny I wish you all the best, take care of you.

windwsprer
windwsprer in reply to CassieB

Wow! Good to know. And good for you! Enjoy! While 'duodopa' is a great name, does it really go into the duodenum or a more accessible area? (I'll look it up...)

Bill, can I suggest you get some help with your depression? It caused by Parkinson's often and is not a sign of weakness. However, it colours ones outlook on life and makes everything seem so bleak, to the extent that you may not seek the optimum medication.

Ask a physician to assess your depression, and if they suggest anti depressants give them a go. They too are not a sign of a character flaw and once your depression is under control you can be more active in finding the right meds.

Anti depressants are not for life. Once you are feeling better and have your Parkinson's symptoms under control you could get advice about coming off them and using other techniques to keep your depression at bay.

Hidden
Hidden

Hello from Scotland…. I cannot comment about your treatment nor your physical status and I reinforce that you seek professional support here. Interestingly you use the word 'advanced' I am curious is that your own deduction or is that what you have been told? You are still very young ? The reason I am adding my comment is because no one has yet mentioned anything about having a PMA ( positive mental attitude ) and within your capabilities I would urge you to really engage life, be active, try new things, know your value and keep pushing yourself. Don't write yourself off, we all have so much we can do and need to do…. so today play some kick ass music for me, do something you haven't done in years, tell 3 people they are the best thing thats happened to you and go flip pancakes! Sounds crazy? good! you'll feel alive, and thats what we are PD or not! Kindest C

tjkernow
tjkernow in reply to Hidden

Hi from Cornwall UK, I must agree about the PMA comment, although it can be difficult at times, I told myself when I was diagnosed last May aged 58 that it was not going to get me down.

Of course, we all have low periods and at the moment I have terrible insomnia and sleep in my chair most nights as I wake up with less muscle pain than if I use my bed. I even set up a facebook group NightOwlsRus for anyone to join and pop into, its in it;s infancy but growing.facebook.com/groups/nightow...

Talking to people (or the lack of) I can empathise with being a sole carer for my disabled daughter therefore I do feel socially isolated at times. But, I think we have to make an effort as you rightly have done here by reaching out and asking for some help/support. One last thing I do which is theraputic as well as useful for other people to read is a blog. Take a look at mine tjkernow.blogspot.co.uk/ Itis amazing how many of us parkies do this!

Do keep in touch, and try not to isolate yourself. Talk to fellow parkies, join forums and if you have a local support group its worth joining..... these guys are the real experts because as parkies we live and breath it 24/7.

I wish you well. Tony

what meds are you currently taking

Billynh: I was diagnosed when I was 47. I like RCH21 exercise stretching, ratchet ball, and boxing. Plus I volunteer with a local Parkinson's chapter. My diagnoses is tremor begnign Parkinson's your young life doesn't stop because of your diagnoses, life is just beginning just different. You need to take charge of the disease and manage it.

Have you considered DBS. Your age would make you an excellent candidate

Hi ask your doctor about the nueropatch and exercise it is the main thing that fights parkinsons

Also look for physical therapy place that has antigravity treadmill

Hi pal get hold of your local group share how you feel I have had pd for nearly 20 years I am fifty in July

Are you seeing a board certified neurologist?? this is a must . What are you taking for medication? If you are newly diagnosed medication will ususally keep you comfortable for a number of years.

Karen

Wow I didn't expect so many of you to comment but it is comforting to read your stories and suggestions so thank you !! I plan on getting a new doctor as the one I have now is just to blunt and needs to work on his bedside manner although he came highly recommended who knows maybe I'll just get a few opinions as I've seen 6 different nuero docs in the past 2 yrs for falling headaches trembling and trouble speeking at times I often feel like I'm dazed or my mind goes knumb for about a minute or so then I come back to reality my wife notices this as well I have a appt next week with my doctor and have wrote down a lot of questions I have and after reading everyone's posts I have jotted down about 8 more questions for him I have found that when I get stressed my symptoms get much worse and I was stressed last night but I am feeling much better today and actually tried to exercise this morning mostly just stretching but it's a start !

MagicMax
MagicMax in reply to Billynh

Hi Billy

I have had PD for 11 years now. The first thing to do is to find a Movement Disorder Specialist (a neurologist with an additional year of training specifically for Parkinson's). He will probably start you on Sinemet and several other meds. Personally I would avoid Mirapex like it was the Godfather coming to kill me. Take a Tai Chi class (after 6 months to a year you will have better balance and never fall. Nutrition is one of the most important things to turn your symptoms around; I suggest the Paleo diet. The only medication that made a big difference for me is Azilect (Rasagaline). Take 20 mg per day of Lithium for one month, or a little more, and most of your muscle pain will disappear. Think long and hard before going in for DBS.

Good Luck and Let Us Know How You are Doing,

Wayne

Hey sorry to hear that u r having problems! You need to find a good Nueorologist! I do pretty well on Levi/dopa , Mireapex and for sleep Kanazapam, but if I get really nervous I still have symptoms, this PD sucks! Hey if u want to chat here is my email bquading@gmail.com and if u r interested I could give u my text number and we could chat/ I could use someone to chat with also, hey where r u located?

Have you seen a neurologist that specializes This is important. If the medicine is making you worse then you have to let the doctor know right away. You are depress, thinking life has come to an end. Believe me it hasn't. I have Parkinson's disease beginning tremors in 1987 and diagnosed correctly in 2004. I had a vein burst in my head, ( no warning and no pain)stroke in 2004. I was paralyzed it took a year of therapy to be 99% back. I exercise almost everyday. which improves my pain. Yes there are times I have cried and said why me, but then I have to say why not me, Yes I have suffered with depression for years. I am 64 now and I say, that I am a fighter and I will not give into this. Please , please check with your doctor and be blunt with him telling him everything. I care, so please keep in touch.

hi billynh i too have trouble finding someone to talk to so send me a message

Billynh
Billynh in reply to salon

Thanks for your message and yes I want to talk to everyone I can I'm new to this site and I am still learning about it not being very computer savy I always take the hard road lol but I'm getting better today was a better day than yesterday and I'm hoping tomorrow will be even better than today !

been diagnosed 8 years have recently been very depressed

1st off -Hang in there. Do u have a movement disorder specialist? a neurologist u trust and communicate with? That wood b my 1st choice. And yes, there r a lot of meds. for ur p.d. and ur pain. Pain can cause depression and many other conditions. I'm still trying to find the right one for me since Oct. 2013.When my p.d.meds. wear off, i feel a lot more pain. Pain is my partner w/this disease. Please don't let it get u down, cause i did, and i didn't need 2. if u need a referral please let me no. god speed, fronya

Hi there,

I highly recomend finding a really good physical therapist & that is not easy. Ask around. My first therapy did little for me. Then someone told me of someone & what a difference. I too was falling & was sent for balance issues.

This guy does everything from balance exercises to manipulation for pain & even waltzing for balance. I have other issues besides pd. My R.A. causes a lot of my problems. Have you been to a pain specialist about your headaches. All our problems aren't always caused from the PD. I wish you the very best. This site is good with so many people finding out differant things so we can help one another.It's marvelous. Blessings.

Loika

There is a generic drug called Low Dose Naltrexone and my 85 year old father, who has PD, went on it and it has helped him. He previously tried a dopamine agonist and entacapone, neither of which helped him.

LDN is an opoid antagonist and at low doses, taken at bedtime, causes a short-term cessation of endorphins and causes your immune system to rebound. LDN dosage is started at 3 mg then raised to 4.5 mg. Though, depending on the person, the required dosage may be required.

You can request LDN from your doctor but they will probably not prescribe it (though you should try). LDN doctors can be found, and LDN can be purchased from the following link:

ldnscience.org/low-dose-nal...

Also, at a nutritional level, start taking vitamin D (at least 2,000 IU a day). Vitamin B12 in the form of methylcobalamin, sub-lingual dose, at 5,000 a day. Scientists in Brazil removed meat from patients from PD patients diets and supplemented them with 30 mg dose of Vitamin B2, riboflavin, 3 times a day, and their symptoms improved from 44-71%. Vitamin B2 only comes in doses of 100 mg and I take them 3 times a day.

Food wise the Mediterranean diet, fresh fruit, veggies and fish, is the best diet for PD patients. Another study linked heavy milk drinking with PD disease in middle aged men.

The scientists at Neuroresearch took a man scheduled for Deep Brain Stimulation and, with therapy, they brought him back to full functionality:

ncbi.nlm.nih.gov/pmc/articl...

I felt the sane way, please feel free to leave me any messages and I will respond.

ERIC

You are not alone, I went through the same thing. If you wanr I an respond with more info On PD hopefully you eill fell beter

i have alot of muscle pain. sometimes i hurt so bad i lose logic.so sorry if i knew what to do i would share.

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