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  2. Hunter Dan

    Seeking hiking/backpacking partner (TN)

    I am also considering thru hiking the AT , although my time frame is not locked in as I have teenagers in the house . One will be graduating next year and one the year after . I am in Western NY but would consider heading down to do a 3-5 day hikes . I am 54 and diagnosed in 2015 . I currently try and hike 5 to 7 miles a few times a week . I started gathering things for extended hikes last year with a trip down to Pittsburgh and the REI store . Picked up an Osprey pack , water purifier and other assorted items to add to what I already have . My wife wants me to do the AT ,but would feel bad for taking off and leaving her to tend to everything on her own . Dan
  3. johnny

    Strange "electrical nerve" sensations

    Hello Well good to hear we all have company with this problem.My jerking sessions almost always start after the sensations.While this is a complicated problem there are simple solutions.. First concentration seems to work well.I never get them till my mind or body relaxes ,so keep busy,lol Another simple help for me was ibuprofen .It does help.Alcohol stops for awhile but I avoid it now due to taking comtan.Ive cut my c/l down to 3 pills a day now with 1 comtan,pretty low but it has benefits mentally seems my multitasking has returned but don't over due.lol laughter therapy keeps me breaking the temperamental cycle along with my friendly advice from Dr.Low,always there to keep me going.Good sleep helps .Jerks and pain went away lassummer after I changed brands ,activis (r539inprint) to MYlan cl2.But why they came back now even on Mylan is a mystery. Big help for me is to keep my mind off my self as much as possible..There is so much going on today.Poverty,inequality,poor wages,no pensions to look forward to.helping improve a life for others is very rewarding. Lots of things to keep my mind busy and keep the jerks away.lol Has anyone got a good answer form a doctor on this problem??????Mine seems to think it's stress.lol Happy Memorial Day
  4. Yesterday
  5. stump

    Seeking hiking/backpacking partner (TN)

    Wish I was local, and also no longer working. Sounds like a grand idea.
  6. fire1fl

    Shot in the dark

    In addition to all the good advice you're getting here consider this: 1. When you "drop cigarettes" don't pick them back up. Research nicotine and PD and you'll find there is some active research into whether nicotine has a role in alleviating PD symptoms. If you need to continue to self-medicate, use a less destructive route of administration (gum, lozenge, patch). 2. Caffeine has also been shown in some research to correlate with improved symptoms and/or enhanced medication effects. The only non-medical activity that seems to matter is exercise - which you can and should do (Rock Steady boxing, mountain cycling, running, swimming etc.). No matter whether you're diagnosed or not, this will be the start of your future (protection against all manner of illness). Also you might want to go online to find Federal government PD researchers recruiting volunteers (https://www.ninds.nih.gov/current-research/focus-research/focus-parkinsons-disease ) (likewise the Michael J. Fox Foundation). It is possible to get your diagnosis refined by one of the medical centers conducting research.
  7. jb49

    Good morning!!

    Thanks for all of this Tom, happy camping to you. jb
  8. Summary: I am looking for a fellow Parkie that is interested and capable of extended overnight backpacking trips in the Tennessee area, with the express goal of possibly attempting a thru-hike of the Appalachian Trail (AT) next year. The initial trips would be 3-5 day overnight trips to determine whether or not we actually like it; our capabilities; test gear to find what works the best; and get in shape. IF all of that goes well, I want to attempt the AT next year - with the itinerary open to discussion (northbound, southbound, flip-flop, etc.). I am located in West Tennessee. Any tips or suggestions about finding a hiking partner, fund-raising, raising awareness for PD, etc. would be appreciated. Detail: I am a 46 year old male diagnosed with PD in 2011 after noticing the first clear symptoms in 2008. I was forced to leave work (Registered Nurse) in July 2017 due to a loss of ability to hand-write, type more than a few sentences, adequately control a computer mouse, fatigue, and dystonia in my right leg - among other symptoms. I was approved for DBS surgery last fall, but decided to hold off for a while due to several reasons, such as an improvement in my symptoms after leaving work and the realization that once I have a generator pack installed in my chest I will no longer be able to carry a backpack. Once I left work my stress levels dropped dramatically. I started exercising, eating healthier, and taking vitamin supplements. My walking improved dramatically, and I found that I was able to go hiking. Since then, my wife and I have taken several day hikes including two days on the AT up to the top of Roan Mountain and across the balds north of Carver's Gap. I had no problems and loved every minute of it. I intend to have the DBS surgery probably in 2020, so I feel like next year is my final chance to thru-hike the AT if I am ever going to. To be clear, I have not decided 100% that I am going to do this. That is why I want to take some shorter test trips this year to see if I can handle multiple days of hiking and camping. My wife is employed and won't be able to go, but I feel that I would be more likely to finish if I have a hiking partner. Plus, if the other person has PD as well, hopefully we can be more understanding of each other's abilities and limitations; as well as raise awareness of PD along the way. Thanks in advance for your assistance. Kevin
  9. Superdecooper

    See an MDS or continue to monitor as per my neurologist?

    Hi John, if you take it now and it makes you feel better during the trial run, you could still stop taking it if you don’t feel like you want Or need meds now. But Youd have an answer i suppose and that would be helpful. Also it still might take a while for an official diagnosis..try to take it one step at a time.
  10. Last week
  11. John in Virginia

    See an MDS or continue to monitor as per my neurologist?

    I'll take any answers now, please! I assume that based on my symptoms and my doctor's suspicions, I will be getting an official diagnosis soon.
  12. Superdecooper

    See an MDS or continue to monitor as per my neurologist?

    Hi John, Obviously you want some answers. Do you want them now or later. -S
  13. John in Virginia

    See an MDS or continue to monitor as per my neurologist?

    Hi all, thanks for the comments. I did see my neurologist again today (not an mds), who said my motor symptoms are basically the same, but he felt some rigidity in my arm. He is concerned, but not convinced I have crossed the line between a tremor diagnosis and Parkinson's. He put me on a trial run of l-dopa, which he says will likely answer the question. I will be seeing an MDS in September. My symptoms are not really affecting me a this point, so there is the question of whether I start medication now or hold off on treatment until quality of life is affected. This is scary stuff for a 48 year old dad of 3 kids and husband!
  14. LAD

    Good morning!!

    Started to watch this and pretty good so far.... LAD
  15. MusicMan

    Shot in the dark

    Start with a neurologist. For maybe $200 he/she can give you some insight on whether you should be worried or not.
  16. nosoupforyou

    Lost waiting for a diagnosis

    Antipsychotics can be a cause of Parkinsonism, rather than YOPD. Has your doctor(s) explored this possibility? Especially without rigidity. https://www.ncbi.nlm.nih.gov/pubmed/10221855 Just a shot in the dark but that might have something to do with your symptoms?
  17. otolorin

    Lost waiting for a diagnosis

    Christian V. Cheer up brother, while waiting for your appointment,push it and force it while you are still young,exercises has been proven to help.Don't let the symptoms pin you down.I felt exactly the same way when I first noticed my symptoms,filled with fear,until I got my diagnoses,after a waiting period of about 7months.The waiting period for my MDS initial appointment was tough,but I pushed through it.Yes you can! Good luck.
  18. otolorin

    Strange "electrical nerve" sensations

    I get all types of buzzing in my Left arm and leg,sometimes painful,sometimes not painful,they are worse during wearing off periods.Sometimes I get them during my on periods.Gardener you are not alone.
  19. Mihai

    Lost waiting for a diagnosis

    Hi Christian, I was diagnosed at 33 years of age...that was almost 17 years ago. My initial symptoms were lack of arm swing on one side, bradykinesia (slowness, poverty of movement), and rigidity. My hope for you is that what you have is not PD; however, if it ends up to be PD, don't fear and don't lose heart. Young onset (diagnosis prior to 50) usually has a very slow progression and there are a host of good medications that are helpful. It is a very manageable disease; although as someone has pointed out, we all experience the disease differently with regard to symptoms. I have never had tremors at all. Try not to worry (I know...easier said than done). There is no definitive test to diagnose PD...simply rule-out of other things and commonly a trial of PD medication. I am still working full-time and doing everything I used to do... Some days are more difficult than others, but it could be alot worse! While PD is a progressive disease, and while there is no cure, there is much promising research going on. I have been involved in about 7 clinical trials. In fact, my current treatment came out of a clinical trial...I have a medication pump that infuses medication all day long. It is a wonderful option! Anyhow, my prayers and thoughts are with you as you wait for your appointment. We are here for support if you need us! Peace and blessings, Michael
  20. I've been following Dr. Constantine's work, in Italy, where he is following 2,500 patients on high doses, usually 4 g a day, of thiamine HCL and is reporting very positive results. I also participate in the Parkinson's forum on the website healthunlocked where many of the participants are also taking high doses of thiamine HCL and are also reporting significant reduction in symptoms. Have you heard of this and/or are you following this, i.e., do you have an opinion about it?

  21. TexasTom

    Good morning!!

    After my surgery it was odd, first time I had experience nausea from my Sinemet! I was at two Sinemet and a Comtan every three hours and needed that medication, but could feel my neck muscles tighten like crazy... ended up cutting down to one Sinemet every three hours. Brain swelling plays tricks on your medication levels for a while, often a "honeymoon" effect when you feel like Superman Thalamotomy and Pallidotomy where two types of brain surgeries that were done years ago. Pretty much replaced by DBS these days. Just inserting the right brain lead brought instant relief to my left side tremor during surgery. I had dual STN placement, many as my dystonia was the biggest issue I was living with. I have very little battery voltage on my right brain, zero tremors on the left side. The right side is not as good, some tremor but worthwhile. The oddest part was during programming how much my voice changed. There was a sweet spot of a good deep voice, but too much voltage and my facial muscles twisted into a knot. Strange things. I need to check in more often, but at times just get too busy with life. Still working and keeping way too active!
  22. TexasTom

    Good morning!!

    JB - that is well-packed dirt. Primitive Camping, with a composting toilet. No running water. It was at 7,000 ft so thin air that I wasn't adjusted to! After DBS surgery it took me three MONTHS for the brain swelling to go down. Take it easy, I returned to strenuous workouts too soon after surgery, basically, I was bored and missed my workout group. I have myDBS up in my chest. I had that location as docs are still scanning me every six months. It was odd how much my back hurt after surgery. The battery is the front, but it is a 'reflected pain' where the pain has another location. Odd, but does happen to some of us. Linda -- Every time I go into my doctor's office they all say "You look fantastic!" I have confounded my doc's. I like that! I just keep in good spirits and enjoy every day! My wife thinks I've gone off my rocker buying the van, but the idea is a simple place to sleep. I no longer drive at night or when fatigued. So pull over and nap, or sleep until daybreak. Gives me more options to remain active.
  23. JLCoppett

    Strange "electrical nerve" sensations

    Thanks for posting this question!!! I have been experiencing this for a couple of days. My doctor adjusted my DBS and raised the frequency by around 20,000 mhz on Monday. Today is Wednesday, and I thought my DBS was shorting out. LoL It feels, to me, like I have a pulse generator hooked up to my back. I called the hotline that the hospital has for DBS Patients, and I have to be there tomorrow to have my unit tested. It's a rough road that we Parkinson's patients have to travel, but it's good to know we're not alone!!! Thanks Again,
  24. stump

    Missing Meals?

    My biggest issue with food is just general grumpiness when I miss a meal. I am fairly sensitive to protein around medication time. So if meal time gets delayed I have to choose between food and meds. If I choose food then of course my symptoms get worse. So usually, if I think it won't be too high a risk of homicide, I choose meds and then wait the hour until food is an option. Haven't noticed the quality of what I eat making much of a difference to my PD. Other aspects of life, yes. And yes, stress definitely makes a big difference. But it depends heavily on the type of stress as to how my symptoms react. Some will provoke an anxiety attack, other stressors will set off my tremors, and still others will get my foot cramping/dystonia or other things.
  25. LAD

    Welcome to the club

    You will probably get the universal parkinson's disease rating scale test at Hopkins. I have had it for the research studies and at my appointments. It’s pretty thorough and challenging. I get really competitive with my scores: we have been researching freezing....think of a song with a beat ... rock Back and forth... look at an object in front of you .... use a side step motion ... good luck! LAD
  26. jb49

    Good morning!!

    Thanks for all the good wishes everyone. I have been getting lots of advice from a man in our parky group that lives not that far away. He tells me too that I need to slow down and recover. I should know that too. Sorry for the panic attack. His name is Rob and he had the same opration as I did, at the same hospital at the same clinic. I did get my stitches (wire ) out yesterday in town. I have lots of help here at my house with neighbours cutting my grass. I still have trouble with my sore shoulders and that is an old problem. And .today was a better day. I slept better last nite and that clears up my head as well. I still have a long wait until it is programmed and turned on. I look forward to that day. In the meantime , I need to get the pill routine down to a better scedule which seems to be a bit less than I was taking before. Thanks everyone for your help.
  27. You should seek a neurologist for diagnosis and management. They may or may not recommend an epilepsy drug or myoclonus drug.
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