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New normal

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Everything posted by New normal

  1. New normal

    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.
  2. 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
  3. New normal

    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
  4. New normal

    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.
  5. New normal

    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
  6. New normal

    Extreme muscle tension. Dystonia?

    I am comfortable in having Gabapentin control spasms and conclude it is PD related. i,hope others can benefit.
  7. New normal

    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
  8. 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??
  9. New normal

    Bucket list BEGINS!

    After weeks of challenges, we are finally on the road. IMG_0098.webp
  10. New normal

    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
  11. New normal

    Building a new home & looking for suggestions

    Really good suggestions. We put an outside entrance to master bedroom. Reasons: quick exit/entrance in case of an emergency ( already use it for paramedics); Its handy if we are confined to bed & still want visitors; and if one of us needs exrended care at home we added a very strong patio framework to the door entrance in case we want to add a separate/expanded care unit. We use the door far more than we expected. As MS said, it makes a convenient way to be outside. A great thread. NN
  12. New normal

    This works for me...what works for you?

    Hey Marc, just read your history and your exposure to Agent Orange. DH was off VN coast same time as you on USS Wedderburn. Have you applied for military disability? NN
  13. New normal

    This works for me...what works for you?

    Marc, Thank you for posting link..fascinating. To dove tail, DH is likely to have PD from exposure in Vietnam to Agent Orange, an extremely toxic herbicide. I lived on a sustainable farm when herbicides and pesticides were introduced. Farmers went crazy with it...on driveways, play yards...it was everywhere in my world. We had a 12 foot water well wherein water tables would likely carry drainage from fields. Both of us have negative DaT scans...both are showing accelerated symptoms as C/L is less effective. Both of us have significant PD characteristics while also having atypical presentation. To carry this theory further...could it be the increasing rate of YOPD is caused by introducing numerous immunizations and innoculations to infants days after birth? I dont want to get into a controversial subject, but I wonder about the toxic excitability element discussed in paper is from foreign substances that neutralize body's immune system....or excite it. Great knowing this work is being done. Thanks for your research, Marc. NN
  14. New normal

    Bucket list BEGINS!

    Lad...a truly lol...DH lol as well....its nice to have support and not feel we bothering people. i've amended bucket list..instead of seeing a small town July 4th parade...I want to be IN a small town parade...so we signed up. Organizers liked our idea....only to learn all towns combine...this is one of the largest in the area...can't back out...Amazon is sending me USA and POW flags, balloons, and garland to dress up big blue, with candy to throw to little ones. We've decided DH will ride behind...since people smile when we pass...wish us luck...(smile) Here's wishing you all a safe and fun July 4th. NN PS to bikers...First/second,gear on Harley in hot weather for a couple of,hours.....hmmm, we may need to reconsider, ya think?
  15. New normal

    This works for me...what works for you?

    NGU, what a great post! Do you think the good feeling you get is because you are in control..it is finite, measurable, predictable...and you can see a completion...all things PWP hope for? Hope you continue posting. NN
  16. New normal

    Bucket list BEGINS!

    So today was a kicker! I am the eternal optimist. With the prevailing wind against any lodging anywhere, I was able to get a lttle cabin on the lake for a week! For those who dislike long posts, I'll skip details. I am a firm believer in concepting.."anyone who can conceive and believe, wiill achieve." So on our bucket list...was a cabin on a lake, a small town 4th of July parade (which goes directly in front of our cabin), waterfront for kayaking, and quiet roads to ride big blue...BAM ! All in one pkg!! ? I concepted so HARD to have a bed to sleep in...our little van was great when I could curl up like a snail next to DH...not so now...hmmmm, restless leg X 2...acting out x 1...frequent bathroom breaks x 2...etc...etc....WAY more than we could do...so we are especially grateful to have more space. We start tommorrow. Grinder, these van conversions are great...started by Canadian company...called Roadtrek. They sell for nearly $70,000. We got ours from my mom with low mileage...but it is sooo great to have potty, bed, and a cold drink within hands reach. We spent the day at a national park lakeside...and seldom left the van...we were tired...but reading a book while seeing the water, sky, and trees ....protected from bugs and sunburn......it was all good. Actually, to sound corny, I think of the forum each day...we are grateful, and recognize not everyone has this opportunity...I am sharing to prove that even with the darkest clouds ahead, we can still exercise a degree of control of our lives. As I have said, quite honestly, DH & I were wasting most of our time inert...resting all day...just existing. Our bucket list forced us to move again...and tho we can't do as much, we see the world is moving...families are at picnics...teens are on jet skiis...and it motivates us to want to immerse in nature's bounty...feel wind, smell newly cut hay... or decipher images in clouds together... it ain't been easy...but so worth it. ? NN
  17. New normal

    Hand tremor when nervous, anyone else?

    Grinder.. This made me laugh...always wondered if there was an upside to the "mask"...lol. I get andrelin rush while riding HD trike...but because I have resting tremor, I dont tremor with hands on throttle and clutch. However, while riding as a passenger...then I tremor...alot! Keep swimmin' NN
  18. New normal

    Bucket list BEGINS!

    Hi guys! I really apprecate the effort to get pics. I wanted to share our trip thru pics. Linda, i did that..get pic to url..then it wd open..no luck. Maybe admin can help. Thanks Grinder for trying. In SW it was 120 when we left..we are in Idaho...absolutely beautiful blue skies, green trees, and white foamy rivers. Being from NW, I love the vibrant contrast in colors. It is stunning compared to the desert we now live near. Seems like I am home. so far this has been a perfect trip. We chose to use our 1990 converted van..and yep, it is still the same experience....Heater and frig aren't working..we are huddled together to keep warm.....wouldn't want it any other way! I was lucky to get a reservation in RV park usually packed during summer..but only 2 nights..so we will have a great adventure when we leave ...trying to find a home on 4th of July! we were exhausted after packing to leave...we slept 2.5 days in hotel. Then we felt prepared to continue...reality strikes...regardless of effort, just can't do as we have before....so we will adapt. We will travel and camp about 2 days, then find s bed and sleep 2 days. Better than not doing at all. I prepared .. we have 10 days reserved in Montana...10 days reserved on Vancouver Island...so we wont be traveling all the time and can rest. it kinda looks like neuro may be correct in MSA dx. Symptoms are progressing fast. Ya wouldn't know it with my writing...but being able to take time in texting makes it possible. Cog issues are worst.. Short term memory is a lot harder to deal with than I ever imagined. I am SO grateful for my humor...just can't write a script so funny as what I do or say. DH finds no humor in my scattered thoughts..I can see pain in his eyes when I am off the planet.. I think I know rigidity, spasicity, and dystonia now...they can all be in the same place at the same time. Quite an experience to analyze .. which I've stopped doing...there is no logic to PD...regardless, one cant predict or prepare...I am concentrating on present time consciouness...saving energy for important things. i cannot emphasize enough ...retire early..scale down..remove stress and obligations...and love the ones you love. Now. I am grateful DH & I have had a full life together. My heart aches for young YPWP...we will only know the "why" after we pass....to use energy on finding answers to questions that cannot be answered is wasting time...assets are nothing ...relationships are everything. I cannot justify why I have been so blessed...I can only pray for those less fortunate. in the morning we'll try to ride big blue around the lake..."try" is operative word..little sleep tonight...but after all, for PWP, "try" is our world, right? Hope erveryone discovers their peace and purpose. Thanks for letting me submit a "long" post. (Smile) NN BTW..took over 90 minutes to write this...but enjoyed sharing.
  19. New normal

    Bucket list BEGINS!

    I found a converter..edited post...i cant open it..can you?
  20. New normal

    Bucket list BEGINS!

    So how can i load a pic, i tried sending it as an emial to,get in url mode...didnt work, suggestions?
  21. New normal

    Hand tremor when nervous, anyone else?

    Good discussion. Like Patrot said it can be good stress...i tremored at a symphony...can't imagine if I had been to a rock concert! I tell grand kids it is my happiness barometer...happier I am, tremor increases...they think it is funny. On a serious note, I have avoided adding meds when stress increases symptoms. Once environment changes, symptoms relax
  22. New normal

    Bible Verses....

    Enjoy. God Bless NN
  23. New normal

    30 yo Husband diagnosed with YOPD

    Kudos to Murray...great post, well said.
  24. New normal

    PD, gout, uric acid, bladder infections

    I tried to remove this post. I used wrong reference link. Regardless, it is an interesting topic...high level of uric acid and its relationship to PD...sorry guys.
  25. https://www.researchgate.net/publication/51732252_Urate_as_a_marker_of_development_and_progression_in_Parkinson's_disease Wondering if l dopa causing increase of uric acid relates to bladder infections, joint pain, kidney failure seen commonly in PD