Help understanding PD

[RoosterPD]

I am new to this but need help. I have a PD a new diagnosis since dec2010. I am a retired firefighter who's legs stopped working, falling occasionally, extremely tight muscles, painful neck movements, "facial masking" and just crappy days. I am trying to learn about my disease and how I got this? I spent 29 years helping others, now I struggle everyday to help myself. Meds help a little. Humor also helps. Any suggestions would greatly be appreciated. Thanks!!

[Captsteve]

Stiffness was my major problem it was like I was going paralyzed little by little..I just kept taking more and more sinemet to make it threw a day . god forbid i left home without a pocket full of pills before i left the house.. i know some people are not big a deep brain stimulation but its help me a lot. but that being said its one risky operation if something goes wrg . its just like parkinsons it self, effect everyone different.

[Victor]

I have worked as a firefighter also but for only 24 years. I was dxd at about the same time you were. I believe there is a connection between all of the CO and cyanide smoke that we have been exposed to. I wish I would have taken more caution on scene and wore the SCBA more. There used to be a website just for firefighters with PD but, it's no longer up.

I wish I could give you some better advise on what to do to feel better! I am new to the disease and to this group. I have seen some excellent advise from the group and they truly seem to care and are willing to help. The only advise I can give at this time is; Keep a positive attitude, stay active, get involved and most of all push your Doctors for information and find a specialist.

Best of luck, Victor (IAFF Local-187)

[Captsteve in reply to Victor]

i think exposure gas fumes is one deficient causes of pd . i was exposed to a huge amount of of oil fumes during the gulf was. pd is nowhere in my family nor can i find any other reason for it

[Joealt in reply to Captsteve]

I received multiple blunt trauma to the head about ten years ago, but not like a boxer gets, so I ofter wonder if that was a factor in my PD history

[move4parkinsons]

Hi Rooster I have it 8 years and everyone gets different symptoms and reacts differently to the medication .For me I have not really looked at how I got it, I have it ,so I dont think I can do anything about how I got it, but I may be wrong

However I have learnt to manage it and I did that by looking at various things and seeing what worked .So for me the things that work are exercise ,I exercise every day it is essential for me to stay well mentally and physically .

I listen to my body and see how the medication is working ,for me I take levadopa and protein affects the efficiency of the absoption, so I am very careful about eating protein ie meat fish chicken but other forms of protein like nuts dont seem to bother me. It is a case of try it and observe

I stopped drinking alcohol because I get a lot of freezing when I am off and nearly fell a few times after a glass of wine .I heard Jon Stamford speaking recently and he said that when you loose your sense of smell you dont miss the alcohol as much and I agree I had never thought about that before .

I also do yoga which is great for flexibility and relaxation .I set myself goals and give myself things to aim for that give me a purpose in life,Sounds like I have it all sorted believe me I also struggle and when the dark moments arrive or I cant move (literally) I try to relax and say this will pass

.If I fight it my body gets more rigid and I am in a worse position.My son told his girlfriend recently when she was concerned about me managing Parkinsons .He said my Mum manages Parkinsons ,Parkinsons does not manage my Mum!

[shasha in reply to move4parkinsons]

hi can you explain more about the protein and side effects with levadopa - i am on a self administered diet which is mostly high protein and no carbs - i have been on it the same time as i was put on neuro patches - so it is abit silly of me i guess ?

[RoosterPD]

Thank you all for your help!! I never realized how much support is out there. You guys are great!! I'm going to fight the fight and handle this each and everyday the best I can. I truly appreciate the great advice from you PD veterans guiding the "rookie" in me.

[MichaelOM]

if at all possible, your primary PD doc should be a movement disorders specialist, not just a regular neurologist.

[wacodave]

First off, I hope you are seeing a neurologist with movement disorder specialty. Second, your painful neck movement is likely dystonia and I have been taking specialist-administered injections of botox on the back left side of my neck for almost a year now, six tiny stings every three months and have completely lost the pain in my neck. What a wonderful cure, if I could go so far to say. But as so many have rightly pointed out, what's good for the goose ain't necessarily good for the gander. And lastly, find a support group in your community if you haven't already. There's power in numbers, and even though we're all different in many ways, we have one thing in common for sure. We're all looking to improve our quality of life. God bless and keep you safe.

[NMelody]

Dear Rooster,

My dad was diagnosed as a person with Parkinson's last summer. He was a welder, race car driver, and team building teacher before retiring. A few things came to mind when I read your article. Reaching out to others is your first best step. We found local support groups and I even went to Washington DC last year to the Parkinson's Action Network meeting to train as an advocate and talk to people on Capitol Hill.

Start exercising. Although going to the gym was NEVER something my dad would do, he now does so faithfully and his doctor can tell! Something to try to help with your walking is a cane or walker with a light beam. It will trick your brain into making your feet move. A gentleman in our support group has one. Please keep writing. What can be difficult about PD is that everyone is different. But what is nice is that people are so willing to share what they know and try.

Nikki

[RoosterPD in reply to NMelody]

Than you Nikki

[margie]

I receive botox every three months for my dystonias of my feet and calves. It has worked wonders for me. Please see a neurologist that specializes in movement disorders for your Parkinson's and your dystonia. Exercise is really helpful and joining a support group helps tremendously.Please keep us updated, we care.

Margie