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John Hoefen

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John Hoefen last won the day on August 13

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  1. John Hoefen

    Mired in Muck

    Hi papa Today many of people fear the future and for good reason. DT brought alot of it.We have just 3 weeks to regain our democracy . Help getting a strong voter turnout is a surefire way of forgetinng our aliment. John
  2. John Hoefen

    Anyone stopped by police? how did they treat you?

    A good thing here is why does anyone get stopped.IF your driving ok it should not be a issue.Paying attention to our driving will do more here then fear .
  3. John Hoefen

    new PD support in upstate NY

    Im about 20 east of rochester
  4. John Hoefen

    new PD support in upstate NY

    I've been planning on setting up a new PD organization ..It will be educational,support and referral group. We have a small number now but it is growing.If any of you living around our area and would like to join let me know. I've talked to some other independent groups and they are doing well.They usually have a optional small membership fee and are all self run. No staff to pay for and all the funds stay in the local group.The national groups take 75% of the money.They educate and train healthcare facilities and staff.If you need one they recommend only those who have been trained so don't end up with someone who has zero education with PD someday. We are doing this because many here feel the need for a independent support group.We have lost our input in the meetings available in our area. Our motto will,be to help other members maintain the best quality of life and give them the information they need. to do it free. Thanks john
  5. John Hoefen


    Hi Dave I can see what caused your temper outburst.been there myself seems everyone has a opinion .I actually had the same thing happen to me.Back a few years we went to maine for a family vacation.These things happen to everyone so don't be to concerned about them.Always the apprentice never the master.What I do when I get early morning anxiety,usually in the form of racing thoughts is relate to it as a symptom of Low dopamine levels and also for me apnea.I think of my racing thoughts as distressing but not dangerous.Usally I go back to sleep in awhile maybe longer if I take a sinemet. Good thing for PD its basically a movement disorder leaving us with good mental functions
  6. Hi Mark

    A pd friend of mine is having a tough time.He is in a VA NH.He can walk without a walker.no eating problems or falls. but he does freeze.His big problem is confusion.Gets lost in the unit.he was hospitalized for it but came back worse.He's now still confused but mobile.I don't think he remembers much and very hard to talk with him.I haven't been able to find out his meds but really think this all is avoidable with proper meds.This is not the only case of meds problems here.Any idea of finding someone that will help him.I didn't have any luck with the patient advocate.



    1. Show previous comments  1 more
    2. John Hoefen

      John Hoefen

      Hi Mark

      The last time I saw him he was pretty clear mentally but he was in a locked up physically.Of course after he had meds got better till he ate.he also declines mentally after his meal very sleepy.He has access to a movement clinic but like me it hasn't helped.

      What bothers me is the solution is very simple,proper timing especially with food intake.

      More should be done by the foundation to demand proper training for medical  caregiver


    3. MComes RPH

      MComes RPH


      The Parkinson Foundation does have it's Center's of Excellence and recommended physicians, neurologists, and movement disorder specialist, which can be found on the website. Do you know if this is a Center of Excellence or a Doctor on the recommended list? 

      I know it is a VA but sometimes the physicians that work there might be a part of the Excellence group. I also know that VA facilities are not known for have top tier practices, unfortunately. I had to go through this with my father. Their stance was that their hands were tied by the government and very little decision making could be done at the hospital level.

    4. John Hoefen

      John Hoefen

      Hi mark

      Thanks for the reply.

      He is being seen at the urmc clinic.va here has few nerologist

      Problem up here is doctors avoid 

      Fixing poor managed new patients

      Medical politics.

      New dx is sundowner last visit he was freezing up

      Somewhat comfused

      I think a psych drug was added

      Which is the culprit

      Ill keep you posted 

      Thanks for 







  7. John Hoefen

    Who's on your healthcare team?

    Hi Gardner, It's to bad integrity has declined so much today in medicine..Money sure does play the major part today in our local parkinson care.I've been getting along well,havnt seen a PD doctor over a year.last call for my comtan it was declined as inappropriate.This is the way center of excellence operates today. My major concern are for those who lost control of their meds and are now in nursing homes.One wasn't doing so bad but got talked into and now is in a very perilous state.He Has been very confused yet also walks without support,never falls or has no difficulty swallowing his food or choking.Yet I was told by this family member that he is on a fast decline.I also know he is medicated to control his med caused confusion.he also has lost a lot of weight.he also is carried for by our local center of confusion clinic. I turned his case into a patient advocate and waiting if he will be helped.Others here are either unmedicated or over medicated.Most should not be in any nursimh home if they had compassionate care. Also no help from the parkinson foundation,national or local. One idea I have is starting a PD org run by us and hire our own doctors who have no connection withe corporate state of medicene. We could also hire our researchers also. Things will get better if everyone votes.
  8. John Hoefen

    Sharp intermittent pains part of PD?

    Hi ellen I get those pains Some like shock After i also get jerks Arm twist likee you Has your doctor been helpful?
  9. John Hoefen

    Struggling with family relationships

    Hi gardener I dont know if you also take requip or a agonist they ade me sleepy Otherwise no need for a nap on sinemet& comtan
  10. John Hoefen

    PD is not the end

    Last night i wanted to go fishing.many of my fishing friends have given up the sport.old age loll Well i went alone and caught three nice big salmon Moral of the story true fishermen never grow old including Parkies Lol Have a nice John Ps if ypu live near me i have lots of good salmon
  11. John Hoefen

    PD is not the end

    Good Morning Happen to be reading the obits today.There was a women born 1921 who had PD the last 20 years.She lived her llife with a strong will .She also survived cancer twice There is no better friend than a strong will. Listen to your heart and don't let articles and poor doctors scare you.My conndition has improved by adapting to it.My doctor now is me. Havea nice day. Best John Hoefen
  12. John Hoefen

    10 good years???

    My best sucess is having something on my mind beside PD.lol I
  13. John Hoefen

    Helping with parents

    Hi Lad keep taking care of your parents,great way of forgetting our fate.Or as what Dr.Low famous elixir for the nerves,Do the things we fear and hate to do.As we strengthen our nervous constitution .benefits are mental comfort and inner peace.PD is what it is but when i visit others much worse off I can laugh at my fate alot easier.. My best to you john