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TNdad

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TNdad last won the day on March 14

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About TNdad

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  1. Diagnosed today

    By the way, this new site is very confusing to use. Anybody else feel the same?
  2. Diagnosed today

    After 3.5 years diagnosis changed to stiff person syndrome. Back on walker now after several bad falls. Finding current medical system care seemingly apathetic. My one wish is to get better, and go back to practicing medicine putting the patient first, always. I would say to any practicing physician to get out and find another profession if you don't put the patient first. It seems to me that the best, brightest and most caring people are shying away from medical training. Regulations by government beurocrats have removed the science and art from what used to be a wonderful profession. Sorry to preach, but this has been my personal observation from both sides....doctor and patient. Thanks for letting me vent. I wish you all the very best. Try not to give up hope...it's too easy to do.
  3. Excess mucus build up

    No there's snot. Sorry, pwp humor coming out. Mucinex supposedly helps some people. Others say pineapple helps. I've found vigorous gargling helps somewhat.
  4. Mmmm, Sausage

    I never saw such sausage. Awesome.
  5. PWP 'jerking' in his sleep?

    Many with parkinsonism may exhibit REM sleep without atonia and or REM behavioral disorder such as acting out dreams or talking. Sleep studies, in addition to apnea evaluation, can confirm these changes. These findings often occur years before one is actually diagnosed. 10mg of melatonin and low doses of klonopin help some according to my reading and personal experience. Ask your doctor about this possibility. Sleepless in parkyville.
  6. Flu. Do I still take medication?

    Unless your doc or pharmacist says not to take a medication, never stop. Tamiflu probably saved my life last year when the H3N2 flu was circulating.
  7. Diagnosed today

    Thanks New normal and best wishes, Looking back at the water that passed under the bridge almost 2 years ago is a challenge. I was extremely busy in my practice, dealing with newly diagnosed asthma, and recovering from bilateral hernia surgery. I do remember a burning ache developing between my shoulder blades when doing my evening excercise on the eliptical machine. There was drooling on the pillow and worsening of nighttime reflux with a few terrible aspirations occurring 5-6 hours after eating dinner and going to sleep. I remember many mornings waking up with the feeling that the previous nights dinner was still in my stomach. Looking back now, this may well have been a bit of gastroparesis. A colleague commented a few months back that he noticed my widening gait before the diagnosis. My first orthostatic fall occurred about 6 months after the PD diagnosis. Cold hands and feet also developed and were very new for me. I see a urologist at Vanderbilt this Friday for urinary hesitancy/retention issues. My fingers are crossed that at my age (common things being common) it's just early benign prostate hyperplasia and not autonomic nervous system issues. In the mean time, I'll also keep my legs crossed and hope the urologist has skinny fingers;)
  8. Diagnosed today

    PatriotM, I had hoped to attend the MSA coalition conference in Seattle this weekend in order to learn more about this disorder. I wasn't able to make the arrangements in time which is just as well because I discovered the conference was available for streaming online for free. It was very informative. I still question my diagnosis of MSA-C. MSA-P seems a better fit because of my parkinson symptoms. I've learned that up to 30-40% of MSA patients will show response to levodopa therapy, younger patients especially. The dosage usually required is between 800 and 1100mg per day but effectiveness often attenuates. The overlap with idiopathic PD symptoms makes it just about impossible to diagnose early in the process. There was a great article recently in the New England Journal of Medicine summarizing the pathophysiology and symptoms. I found the article online for free by searching for NEJM MSA BLOG. Feel free to give it a try. There are several presenting symptoms which raise red flags for MDS neurologists. Some include wide gait, early balance issues, early autonomic dysfunction symptoms, refractory response to levodopa often requiring higher dosage, early falls (within the first year of diagnosis) and early need for walking aids such as a cane. Life expectancy may be increased by staying physically, mentally and socially active. That's my plan. That should be the plan for all of us with any form of parkinsonism.
  9. Diagnosed today

    Thanks all, I appreciate the kind words. In truth, things could always be worse. We should all try to remember that we have a disease, but it doesn't own us unless we let it. Keep moving, loving, learning, caring for others and doing all the things that bring you joy. As a kid, I looked forward each month for the Readers Digest in the mailbox. It's kind of corny, but my favorite section was "Laughter is the best medicine". Yes, I didn't get out much as a kid. Anyway, it's true. As a physician I can personally attest to the healing power of humor, laughter and not taking things too seriously.
  10. Diagnosed today

    Just over a year and a half now since the first diagnosis. What a strange and wild ride this has been The most important thing is to just hang on tightly to the reins and don't let go. I've officially been reclassified by two separate MDS specialists with the lovely diagnosis of multiple system atrophy. They seem to favor the cerebellar subtype since my balance and wide gait issues preceded the tremor and stifness. Fortunately I am lucky in that I am responsive to levodopa. Unfortunately, my required dosage increased fairly rapidly. Generalized dystonias are my first sign of "off" symptoms. This week we've given rytary a try with good and not so good effects. The stiffness and dystonias are much improved. Dizziness, dry mouth and very mild nausea have contributed to the downside. I was a little freaked out with the dose conversion from sinemet to Rytary. I went from 1.5 tabs of 25/100mg sinemet six times a day along with an extra 50/200 control release sinemet at bed time, to three suppository sized 48.75/195mg capsules taken 3 times a day. The conversion must take decreased efficiency of absorption into account, because that seems like a whopper of a big dose. I was wondering if anyone else on the forum has been "upgraded" to one of the parkinson plus syndromes such as MSA, CBD or PSP? Statistics supposedly indicate that around 10-15% of PD patients actually have one of these parkinsonism variants. Also, has anyone shared my experience with Rytary? Thanks.
  11. FlyBaby - Michael

    All the best Michael, I hope you recover quickly, get a good lawyer, and enjoy your generous retirement after suing the women assailants, the store owner and the police. Unbelievable.
  12. Thigh and IT band pain

    Ditto to Texas Tom, my physical therapist says I have the same thing going on. Massage and heat help. Stretching done appropriately can help as well. Mine has been attributed to spasticity and the dystonias associated with my form of parkinsonism.
  13. Lurkers? Past posters? Where are you??

    Hi everybody!!! I've definitely been more of a lurker than I thought I'd be since retiring. Life has definitely been less stressful than when I was at work. Less stress is very good medicine as we all know. I'm keeping busy with lots of things including meeting some fellow lurkers in person this summer. My wife and I even got to meet the amazing "Christie" while on a visit abroad. As well as "Livingwithtau" who we're meeting for dinner again tomorrow during my check up at Vanderbilt. It is amazing to see folks in person from the forum. In some ways it's much better than a family or school reunion, since we all seem to have so much more in common and understand the struggles those without this diagnosis just can't fully understand. I know it's still summer, but I'm really looking forward to fall time. I wonder who we'll run into next?
  14. First time attending a PD support group

    I agree with all of the above. It also seems that some PD groups have a separate caregiver support group meeting on a different day. This is a great idea. I often feel that caregivers/spouses need more support than we do.
  15. Reminds me of the two guy's standing on a bridge over a river. The first says "Man, that water's cold!". The second guy says, "and deep too!!" Too bad none of us built a urinal in our bathroom.
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