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New normal

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Everything posted by New normal

  1. 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
  2. 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
  3. 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?
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. INcreased sense of smell?

    Anyone having INCREASED sense of smell?
  10. 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
  11. Anti-emetics

    Well said, my friend. NN
  12. 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
  13. 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
  14. 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
  15. 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??
  16. Extreme muscle tension. Dystonia?

    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.
  17. 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
  18. Stage 3 & 4. Candid discussion. ??

    I am in 3-4 stage PD. A classification based on capacity to function independently. Stage 3-4 is seldom discussed. There are many aspects of 3-4 living. To make it easier for topic search.....and to keep consistent...I suggest labeling posts with a topic including a hash tag. All posts are welcome, of course...structure may make this discussion easier to follow. Suggestions are: # what stage am I in? # cognitive # emotions # daily challenges # medical advances # medical disappointments # tips and tricks.".works for me" # strategy for coping # medication issues # diet and exercise # social issues # legal responsibilities # care givers (CG) feed back and observations # family issues # social issues # lessons learned # hope, inspiration, success stratagies #.venting This are suggestions only. Please contribute ideas ti make this a successful thread. Anyone can develop a new #. This is a huge topic which needs a candid discussion. Personal debates should be avoided....as always, posters need to feel safe and not defensive. Everyone has their "truth" and deserve respect. Advice is welcome. Separating into paragraphs helps persons with concentration issues. Keep in mind, anyone who feels uncomfortable may choose other threads. Truth and reality prepare us for the future. I hope this thread is educational, pragmatic, and inspirational. FYI: common abbreviations are: PD: disease PWP: people with PD CG: care giver Rx: prescription Dx: diagnosis MDS : Movement Disorder Specialist DH & DW: dear husband, dear wife Other abbreviations are found in the sections at beginning of the forum. Hope this post will help some one. NN
  19. Extreme muscle tension. Dystonia?

    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.
  20. vietnam veterans with PD

    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
  21. Extreme muscle tension. Dystonia?

    I am comfortable in having Gabapentin control spasms and conclude it is PD related. i,hope others can benefit.
  22. PD and MS?

    Hi KP, Welcome to the forum. I am sorry you are having so many issues. It is scary when you feel your body changing and no one can identify the problem. Many of us can relate. I am not a doctor. I can only provide my opinion. MS and PD have similar symptoms and often confused. As you said, when you get your spinal tap that will clear up a lot of things for you. I was dx'd "probable" MS for several years. Spinal tap was negative. i am now dx'd PD...."atypical parkinsonism" meaning I have PD symptoms clinically, but a host of other symptoms as well. KP, neurological disease diagnoses are changing and now the term MS and PD serve as an umbrella for many subsets. If spinal tap contains the specific blood formation used to identify MS...then it is likely you have MS. Now that does not mean you may not experience PD symptoms...and vice versa. Neurological symptoms are crazy and mysterious...with researchers trying their best to untangle and separate the diseases. In the last decade the gold standard for dx of PD is a positive DaT scan...for MS is the plague formation in the brain and the blood abnormality. Can MS & PD exist together? Not likely. Answers to you questions may take years to appear. As you experience new symptoms, your doctor will help you sort things out. You are on a bumpy road. It is not easy. Facing an unknown.....feeling changes occurring and not able to understand nor explain them to anyone...feeling alone and detached as the rapid pace of life continues around you...is what we all experience. A suggestion is to be patient. As symptoms occur, accept them. Some can be controlled. Others cannot. Understand and accept this is not a death sentence...your health is askew, but you can still have control. Don't think of your health condition as an enemy....save your enegy in learning to live with PD or MS as a companion...it is what it is. i wish you relief from fear and frustration. Find peace and step thru each obstacle with patience and acceptance. Identify your purpose and serve others as much as you can. That's my tonic for PD....😉 God bless...love the ones you love.. keep posting. We all understand. NN
  23. Hi folks.. The forum "family" often share things that work for them. I thought it would be nice to have a single thread devoted to our "tricks" we have discovered peculiar to our situation . This is not intended for people to promote or defend ...just to share..in the hopes some things may help others. I'll go first...and will try keep it short (ya, right) <smile> The first two things that come to mind came from forum members....a caregiver advised me to avoid a lot of struggles of PWP and caregivers is establishing habits. I took that very seriously. Organizing my environment, daily schedule, and sleep patterns have helped me immensely and has reduced stress levels. When the CG's give advice, I listen. Sounds simple..but works. Second, one of our wisest PWP continues to remind us that "acceptance" is the most vital thing we can do. as each day passes and we are aware of change...the skill to accept it..and move on determines if PD is your adversary or if it can become a companion. Life changes when we quit fighting..and begin working with PD...doesn't mean we quit doing everything like exercise and diet etc...but we make life style changes for improving ourselves...not becoming a victim of the dictation of the PD monster. We retain autonomy in that manner..and feel more control. I have lots and lots more...but committed to be brief....now, guys, come forth with your golden "ah hah" moment or your special"cocktail that helped you most so far. Guys??
  24. Bucket list BEGINS!

    After weeks of challenges, we are finally on the road. IMG_0098.webp
  25. This works for me...what works for you?

    Legal note: Some states are called "short probate" states, like AZ.. It allows a third party listed at your bank to assume bank accounts when both account holders pass. Not like putting another on your account. Third party does not have access until death. AZ allows quick claim deeds to be made so property goes directly to heirs when both pass. It is best to have it recorded. Some states require a Power of Atty to assume inheritance...even if you think you are in a "community property" state. Without it, everything must go through probate. i am not an atty. Just learned this...and it works for me. NN