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New normal

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Everything posted by New normal

  1. New normal

    Watch your teeth!

    Hi folks, I tried to find the thread on dental work....and gave up. I am just the bearer of glad tidings lately....but I want to alert others to what I have discovered. I have always taken good care of my teeth. Regular check ups etc. My last exam showed a softening of the bone...and I had a cavity...which I haven't had since I was a kid....AND the surface of my teeth have been ground down to resemble sand paper. I asked the dentist wny my teeth seemed so rough. After a long discussion , we surmised I am not "bruxing" or clenching my teeth that is common....and he said PWP often rub their teeth smooth....with no crowns or peaks in their teeth. But in my teeth, apparently during the night or during the tremor storms , I chatter the teeth because of tremor so hard, that it is crumbling the surface. Even the surface of the porcelain crowns. Since I have reduced the Amantadine,facial tremors have increased....and now I notice a certain chatter of teeth even during the day....I know, great news, huh? I bring it up, tho, cuz I am getting a mouth guard to protect me teeth....and hope others will be proactive in preventing damage. Just a word to the wise....not a negative...Pd is the gift that just keeps on giving.... Good luck you guys...
  2. New normal

    DaTscan results

    Dr Okun, Does a DaT scan dx PD? Can someone have PD with a negative DaT scan? Thank you.
  3. New normal

    PWP hurricane victims?

    Texas Tom...Music Man...Old &Slow... Regular forum members in the path of the recent hurricanes. I pray you and all others from that area of destruction are safe and doing well. Hope to hear from you soon. NN
  4. New normal

    PWP hurricane victims?

    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
  5. New normal

    Tuscan AZ MDS/neuro?

    Hi,folks, please private message if you can recommend an MDS/Neuro in Tuscan, AZ. New Normal...
  6. New normal

    Tuscan AZ MDS/neuro?

    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
  7. New normal

    Tuscan AZ MDS/neuro?

    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
  8. New normal

    Tuscan AZ MDS/neuro?

    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
  9. New normal

    Good morning!!

    "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
  10. New normal

    Bladder control

    Well, where do I go? This topic....bladder control... is commonly discussed in senior circles. Yet, today my heart is heavy after speaking to DH who is 2500 miles away about he wetting his pants while sleeping. This is no big deal..it happens to everyone...senior or not...PWP or not...I get it. I don't need a positive reassurance why this is no big deal. It IS a big deal to DH. My cheering from the sidelines and chanting positive mantras dim while consoling an alpha male. He is at his sister's celebrating his father's 98th birthday. He had a full day of air travel and is tremoring nearly non stop, and has balance issues. I think his relatives are seeing PD in its true form rather than hiding in the shadows of judgement and speculation. I suggested he take additional l dopa as environment dictates. As anyone touched by PD, his voice had a ring of fear....again, my heart is heavy. Repeatedly. I counseled it may just be because of his exhaustion..a fluke.. or it may be something we need to add to the list. DH has deteriorated quickly since his dx March '16. Neurological signs atypical of PD are increasing. I am leaning more in agreement with neuro DH may have MAS P. As we look back he has had atypical neuro symptoms for over 30 years. We can't determine where he is on a timeline. Also, symptoms are reaffirming he may have Agent Orange syndrome which can be the reason for any number of things. So my question to CG's .....is there any correlation between bladder conntrol to any specific timeline of progression? Is it something that can happen at any point in time? Is it a signal? This may be a single episode since he has had an exhausting day of travel. I think I am having a knee jerk reaction to reality....and there is no one I can talk to,,,not friends, family...just had to get it out of my system. Any comments? NN
  11. New normal

    Eye Muscle Tremor

    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
  12. New normal

    NAUSEA ad nauseum?

    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?
  13. New normal

    Increased sense of smell

    Dr Okun Loss of smell is common with PD. Are there occurences of increased sense of smell with PD? Thank you for your continued service to our forum. NN
  14. New normal

    NAUSEA ad nauseum?

    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
  15. New normal

    NAUSEA ad nauseum?

    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
  16. CG's As many of you have seen on other threads, my DH has been dx'd with PD. What advice have your received since the beginning that has been the most valuable to you ? NN
  17. New normal

    Your most valuable advice to a newbie ?

    Welcome to the forum. What i find great about the forum is diversity of thought and personal history. Plus, the patience and tolerance for independent thinking. Hope you post often. There is someone out there who relates to you and needs your perspective. NN
  18. New normal

    INcreased sense of smell?

    Anyone having INCREASED sense of smell?
  19. New normal

    INcreased sense of smell?

    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
  20. New normal

    Anti-emetics

    Well said, my friend. NN
  21. New normal

    Anti-emetics

    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
  22. New normal

    NAUSEA ad nauseum?

    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
  23. New normal

    Anti-emetics

    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
  24. New normal

    Extreme muscle tension. Dystonia?

    Hi guys.. i saw thread on muscle tension..which has been a problem in right leg for monthes. Tried everything. Muscle stretching daily. Now thigh muscle will get rigid and rise about 1/2 inch..looks like a board...stretches tendons from hip and groin...and from knee. The cramping extends to calf...until entire leg is one huge "charley horse". Pain is indescriable. I'm away from home, neuro would not prescribe. 3 ER trips...MRI, CAT scan, Ultra sound, steroid IV, hydraoxycodone. Nothing helped. Soft tissue attachments were so painful, I barely could,walk...and acute spasm episodes intermittent. Answer : (dont try this at home). I swiped gabapentin from DH. It works! I googled it alot..and was desperate. I could not believe that a condition which exhibited dramatic physical distortion.....and PAIN...could come from the brain!! I cannot wrap my head around it...it just does not match with anything I have learned about body function working with DH in chiro practice for 30 years. So called neuro..reported history...and he prescribed gabapentin. I was experimenting with doseage...too much made me woosey.,,, his prescription now is working after 3 days...no cramps...just soreness from past distortion. Hope,this helps someone.. so, guys, IS THIS DYSTONIA??
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