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New normal

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Posts posted by New normal


  1. 6 hours ago, PatriotM said:

    These disasters are a good reminder that PWP should keep a reasonable supply of medication on hand at all times.  Of course, it's also smart to have food, water, and defensive equipment at hand.  Every generation in history, until the last 2 or 3 generations, had supplies in their pantry or root cellar for bad times.  In the event of a long term loss of the electric grid from a solar flare, EMP, or cyber attack, DOD estimates that 95% of all Americans would die in the first year.

    As you could even see in the southern USA, in a disaster, the sick, weak, elderly, and very young start dying almost immediately.  People died in nursing homes after just a few days of electric power failure.  A few days more, and people on dialysis would die.  A little longer, then diabetics would start to die.  As we can see in Puerto Rico, in a disaster lasting a week or two, food and water supplies run out.  In the cities, the riff raff begins looting almost immediately.

    Good idea to be prepared, especially if you're a PWP. 

     

    Very good point.  As I advanced with PD, I noticed PWP talked about their "stash" meaning they had extra meds stored.  I asked my neuro for a separate rx I could get filled,that allowed extra.  There have been times it has been necessary.  I agree with Patriot to be prepared for,emergencies re: your meds. 

    Still hoping our forum PWP in the distressed areas are ok. Thanks for the comment, Patriot.

    NN


  2. Stump

    DH has VA neuro appt on Nov 13...while not realistic, I was going to try to match days.  I am sure he will have others, so it makes sense to try to do same town. I called one of the Tuscan clinics...asked receptionist which neuro focused on PD....and atypical PD...she responded none of them treated atypical PD.  Hmmm, made me rethink that. Are ALL PWP typical?   They then recommended a woman who left the clinic and was practicing alone...her bio never mentioned a residency...she got her MD from Arizona State College...hmmmm....the other option  was a college clinic ...and I dislike a teaching environment at this point...so will keep looking.

    Stump, we fished Flathead lake Montana...most beautiful of all time...only one small trout..but we were out at dawn...went out again at dusk...can't beat that...a magical memory. You may want to check it out...we loved it just as much as we did the first time. DH scheduled for one on one elk hunt in Idaho Oct 13..... still wants to do it....and it is a nice diversion right now and motivation to be active.

    Thanks for your efforts.

    New Normal


  3. Thanks for the info.LV is too far.  The whole idea is to both go to the same town.  If we worsen, there is a shuttle.

    most neuros I looked for were not very appealing.  Hmmm....we'll see how it works out.  Hop you are well, Linda.  Never know what the morrow will bring...just one day at a time...one foot in front of the other...

    NN


  4. Thank you, Linda.

     Need to find a neuro in Tuscan.  DH had a stroke toward end of our "bucket list" trip.  We flew home and our VA rep encouraged us to see the VA /ER in Tuscan and get referred to a VA neuro. It is our regional VA hospital.  Our Phoenix neuro is out of the country til end of Nov.and has no back up.

    Tuscan is a bit further than Phoenix, but a better drive.  If we have to drive 3.5 hours...I'd like to combine my appts with DH in Tuscan.  So far not much luck.

    Linda, doesn't a doctor have to do a residency?  Researching docs, one did not show residency. ??

    NN


  5. "Grieving is good. As you said, jb, stuffing feelings is just not how we're wired. I strive to feel my grief, accept myself just as I am, then release it all so I can live and love again."

    Well said, Diane.

    Linda, my prayers are with you.  As you well know,  we are all a sum total of our experiences.  Empathy and kindness to others are products of our challenges.  You are especially blessed to be anle to relate to others.  Perhaps your little kitty was part of your evolvement.  Hugs.

    NN

     

    • Like 2

  6. MM

    it was freaky to have eye lids twtch & tremor during a response test.  Neuro sd it was not indicative of PD. He said eye tremor is more like blinking arythmia rather than a tremor.  For what its worth.

    I wonder if muscles that fixate for the "mask" look cause tremor activity near eyes.

    As you say, with PD, how do ya know? Great question.  Will be interested in replies.

    NN


  7. Shop guy & Linda:

    DH went to end of island to get me orange flavored ginger nougats.  It has helped when nausea strikes.

    i am improving. Good news, we are staying close to a blueberry farm.. I am turning blue, but enjoying lots of fruit. I pretty much have my self dx confirmed. Nausea & other symptoms return if I dont take potassium. We leave island 8/17.  Will get labs done in states.

    Northwest locals? We will be nearby til middle of Sept.   I'm considering going to neuro while here. Please PM me if u hv  doctor suggestions for me.

    many thanks.

    NN

     


  8.  

     

     

    On 8/5/2017 at 11:22 AM, Pathfinder said:

    My husband has severe Gasteoparesis, he vomits a lot, has nausea and dry heaves almost daily. His Gasteoenteroligist prescribed Zofran with all meals. It helps somewhat. I would recommend you see your FP or GP for a referral since it has gone on this long. 

    Wishing you better health.

    Thank you, Pathfinder. After my last post, i continued to get worse. I realized ...again...I wasnt taking potassium...and each time I've bn hospitalized, potassium was very low.  So I started taking it...noticed good improvement...but it doesn't last long.  Dr Google via "E medicine" has a great discussion re: potassium reminding me potassium levels are critical to balancing cell activity and regulating cardiac.

    We r in Canada...this is a holiday...all clinics r closed til Tues. most of today, i was vascillating of going to ER.  $1,000 upfront.  So, instead, I've bought pepto bismal for nausea, magneseum for muscle weakness, increased potassium prescibed , still hv waves of nausea, but am coping.   We got bananas, and fruit.  

    I really appreciate responses...with over 2 thousand miles from home and doctors, forum friends are important.

    Lessen learned: move potassium rx from vitamin shelf to daily rx routine as prescribed. It is more than a supplement.

    Again, thanks folks,

    NN


  9. This is FIRST time I've heard this, thanks guys.  The smell sensitivity became a major distraction..I smelled laundry softening sheets when entering a room,  etc.  it was overbearing and combined with  vomiting dry heaves..  Yet, in the total scheme of things, it is viewed as minor.  Ya have to experience it to understand.

    my grandson has severe lymes disease...and very sentive to smell. Now, I understand he grabbing his shirt to block odors.

    Dr Google says PWP who retain a sense of smell are more likely to eventually move into a parkinsonian atypical PD. 

    For me, I see now my chemistry was major messed up for nearly 3 weeks.  Long story, but apparently i became very low on potassium.  Once I took the rx of potassium I am SUPPOSED to take..and added magnesium, Vit D, calcium...I recovered.  Scary to think if I just medicated the symptoms.

    So lesson learned. "Sense of smell" used in diferentiating between PD and PD + can be tricky.  Who knew it can be  gone...then return in different levels?

    That dang PD can keep you on your toes.. (.pardon the pun.)

    Again, guys, thanks for responses.

    NN


  10. Stump, off topic, brief personal note. DH always wanted to hunt moose.  Instead he spent most of his hunting days helping his father.  We r on our "bucket list" trip revisiting our favorite places.  In Idaho, DH met a great outdoor guide who will provide guide service, meals and lodging in a cabin on his property.  DH will hunt am for moose, pm for deer for a very reasonable price. Again, we are reminded to take time to enjoy along the way.  This is a unique chance for DH to realize an experience he thought was not possible.  Had we not made the effort to get out in the world again, this would not have happened.

    You are a great example of maximizing time....an inspiration to many.  I encourage you to post often and share the diverse aspects of your life. It says a lot about you when you are subject to sea sickness, yet pursue your passion for fishing.  Hmmmm, a great analogy for living with PD,  ya think?

    Good luck with the  " Urpies."  ?

    NN

    • Like 2

  11.  

     

     

    12 hours ago, Pathfinder said:

    My husband has severe Gasteoparesis, he vomits a lot, has nausea and dry heaves almost daily. His Gasteoenteroligist prescribed Zofran with all meals. It helps somewhat. I would recommend you see your FP or GP for a referral since it has gone on this long. 

    Wishing you better health.

    Thank you, Pathfinder. After my last post, i continued to get worse. I realized ...again...I wasnt taking potassium...and each time I've bn hospitalized, potassium was very low.  So I started taking it...noticed good improvement...but it doesn't last long.  Dr Google via "E medicine" has a great discussion re: potassium ...reminding me potassium levels are critical to balancing cell activity and regulating cardiac.

    We r in Canada...this is a holiday...all clinics r closed til Tues. most of today, i was vascillating of going to ER.  $1,000 upfront.  So, instead, I've bought pepto bismal for nausea, magneseum for muscle weakness, increased potassium prescibed , still hv waves of nausea, but am coping.   We got bananas, and fruit.  

    I really appreciate responses...with over 2 thousand miles from home and doctors, forum friends are important.

    Lessen learned: move potassium rx from vitamin shelf to daily rx routine as prescribed. It is more than a supplement..

    Again, thanks folks,

    NN


  12. Stump

    I see you have tried several sea sickness remedies.  For what its worth:  Dh, my brother, and I went charter fishing years ago on WA coast. High seas and difficult bar crossing. My bro had been drinking with a Slovonian fisherman the night before.  He recommended rubbing Vicks vapor rub in your navel before boarding.  So as a joke, all three of us rubbed  our navels at sunrise with Vicks.  True story...other than the captain, we were the only ones not sick....caught most fish, drinking beer and sandwiches by 7 am.  Go figure.

    Good luck, Stump.  FYI:  We r on Vancouver Island now.  Dh wants to fish from kayak on island lakes. Locals warn if island catches fire, it may be serious to get to mainland.  One woman here took shoes off her horses cuz they were sparking..it is that dry after 48 days of no rain.  BC fires have Lewis county very smoky...but  little,smoke here on island.  Wish you well.

    NN

    • Like 1

  13. Kinda think this is hanging around for awhile.  Not just the flu.  Don't think I'm pregnant.  Not related to l dopa management (I don't think). I have had 2 weeks of major nausea...dry heaves.  Any thoughts as it relates to PD?  Any solutions?


  14.  

    RE:  dystonia.  Well...as Fred says, PD is never boring...so here is the REST of the story.  WARNING: no one heed my previous experience re:  gabapentin.  I should have known when Diane, the most stable of beings, issued her subtle warning   So, I was doing great with gaba.  I took 300 mg gaba with each l dopa dose...total 1500 mg gaba a day...well below the max Dr Google stipulates...and within my neuros guidelines. 

    It didn't take but days I was looking forward to the next dose...even to the point of spouting, "Yay, its Gaba time!".  I was so relieved from pain, I thought I could compromise my adamant anti drug mantra. Nothing that good could last forever.  Very soon I noticed emotional swings, and personality issues.  More research showed Gaba is very addictive and can require a difficult withdrawal regimen. Even worse, Gaba can interfere with brain chemicals to cause more irregular l dopa assimillation (as I understand ) and may accelerate Alzheimers..... but not always.     "Everyone is different" 

    I've stopped Gaba.  Some of you may have seen Dr Okun answer to my question if my muscle spasms are more likely PD or MSA.  His cryptic answer was the dystonia I described is not likely PD.   I've resumed daily stretching with an exercise ball...even while on our bucket list trip. 

    On a personal note, I drove Big Blue today (our HD trike)..short run to swap vehicles, but included unfamiliar 4 lane traffic, steep hills, trucks and motorhomes. I pulled aside, parked.  Called DH. I was beyond capacity.  In nearly 50 years never a motorcycle accident.  Tonight, as right bicept clenches in tandem with right leg I know it is time to move on.  Hmmmm...two wheels to three...now its time for four wheels to touch the ground...sports car??  with an automatic....smile...

    On a very serious note, I counsel everyone to reconsider their bucket list...whether it is a motorcycle ride or a walk in the park with a loved one....a favorite memory written to a grandchild......if it is worth doing.....your passion or theirs.....It is my hope and prayer each of you has the opportunity and strength to accomplish it...and then...have the wisdom to know when to change...to accept....to grieve.... to move on.

    NN

    PS. To forum members who are confused by my divergent posts...from having painful dystonia in two limbs to riding motorcycles, I understand how perplexing it appears.  Or how I can write and speak with some coherance, but now am not trusted to get out of a grocery store.  Yep, that is the face of PD.  That is me.

    • Like 3

  15. Dr Okun:

    I am 70 yo woman. Obvious PD symptoms since 2008, dx'd PD 2011.   4 negative DaT scans.    Several atypical  autonomic functions including hypostatic B/P (tilt table),  radical changing BP day and night, severe sleep disorder, RLS, halting speech, bladder/bowel dysfunction. 

    Neuro dx "atypical Parkinsonism" and observing for  MSA.  I take  375/1500 C/L daily.     I recently have excrutiating pain/ and severe muscle cramping in right groin, upper thigh, and calf.  Have had xray, CT scan, ultra sound, steroid injections. Neuro prescribed gabapentin 300 mg 2 to 3 x daily.  Which immediatley stopped pain  However, in a few weeks I have increased doseage to manage pain.  

    In last few days, I have had periodic cramping in right bicep where a portion of the muscle(or tendon) rises approx 2 inches. It also responds to gabapentin.  Extremely painful.  So I am accepting I must be experiencing dystonia. Ive read as PD increases, C/L loses effectiveness, and dystonia may increase.

    i know you can not dx w/o seeing me.  In your opinion is this likely dystonia?  Is this scenario consistent with rapid progression seen in MSA? How is this extreme disabling/painful symptom managed?   

    NN


  16. Thanks Fred,

    I am so grateful for gaba's help the excruciating pain, I wd take fatigue as a side effect any day.  Literally, thigh muscle raised up and went into a board like form...tearing all tendons with it.  As,Gaba wears of it resumes.   So far, I havent noticed more fatique.  Dr Google says MSA has dystonia like that... so there ya go...it is what it is.  

    I am glad to hear from you Fred and that you are still in the fight.  Keep swimmin'.  ?

    NN. 


  17. Pd Manz & Gulf Vet

    I appreciate GW video.  I believe benifits and ratings will improve when VA is re organized.  

    We have sent a "disagreement" response to denial given to DH and requested a personal hearing..not a video. We r told its better to ask for hearing.  We prepared such a response VA rep said she is going to work for his ship be added to blue ship list of "presumptive" diseases.

    Good luck, guys.

    NN

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