Is the Parkinson's honeymoon over for me?

[Jmellano]

History:

I am 69, female, diagnosed in 2015,7 months after suicide of my soulmate (we were together33 years). More than one neuro has agreed that the PD was triggered by the emotional trauma. I was a dancer and a cyclist and worked out for many years prior to PD. On Rytary 145’s 2 at 7am, 2 at 11am, 2at 3pm and 1 at 7pm. Prior to that I was on c/l 5 times/day, but I started to experience akathisia as I was going into off time. No akathisia with Rytary.

Symptoms:

Symptoms with ** have gotten much worse in past few months while those with * are new in past few months (I have no tremors)

Total extreme exhaustion**, esp. after exercise, I wake up in a.m. exhausted, Cannot stand for too long without having to sit;** eg, making bfast, cant focus on reading , difficulty moving around on floor stretching or yoga, in bed, need bed rail to move around in bed, bradykinesia**, struggle to balance checking account*, stiffness*,left toes clench floor*, some numbness in left toes (left side is weaker), left foot falls out of clog, slipper, no left arm swing when walking, urge incontinence, no motivation, putting stuff in a bag or bills in my wallet is very difficult**, putting yoga mat into carrier bag,** usually put clothes on backward or inside out, slurred speech**, especially if I talk too much, balance, clumsy, swallowing issues**, weak**, cant open ziplock bag – no strength, handwriting illegible**, typing on keyboard, sometime cannot control fingers**, sense of smell is fleeting, stiff neck**, pain in low left back**, cant figure things out**like how to put something together. (Turned on blender with no cover, forgot how to turn It off), poor posture**, anxiety especially in large crowds, air/train travel, drooling at nite, **yet I still have very dry mouth, profound depression**, have difficulty standing from a seated position**, left leg froze getting out of car, had to lay on back exit car*

Since my clinical test results (show very little progression in past year) do not correspond to how I feel (miserable) my neuro believes my symptoms may be exacerbated by mood, low BP or sleep issues. He has ruled out low BP, I get results of sleep study this week and I have tried 4 antidepressants for a minimum of 6 weeks each. Now I am trying my 2nd stimulant.

Purpose for post:

Is my Parkinson’s honeymoon over and this will be my reality of disease progression; New or worsening symptoms on what seems like a daily basis? I seem to spend most of my day in bed as I am so exhausted. I am still trying to exercise but it is so draining.

Has anyone else had rapid progression?

[DEAT]

So sorry you are experiencing this - not pleasant .

I am female 69 yrs dx 2015. Meds are 150mg madopar

7am 12 noon 5pm.

4 months ago i began to experience sleep issues due to

Akathisia during the night. I did not sleep for ONE minute some nights.

My neurologist prescribed Pramipexole (Sifrol) and it was a godsend. Initial side effects were bad but most short term.

Im taking sifrol 0.75mg ER at 7pm and sleeping ok.

I hate being on another med but the akathisia does your head in.

I truly hope you can get some answers. What you're dealing with is terrible for you. All the best.

[Jmellano in reply to DEAT]

DEAT,thank you for your kind words. Akathisia is a bear, but not much is known about it (as evidenced by google searches.) i never belived in taking pills and i am totally against big pharma, but if i could take a pill to make me feel better, i would do it in a minute! I dont know whata good day is anymore.

[2bats]

May I recommend keto diet or even carnivore diet? I find it has helped to slow the progression and is certainly excellent for avoiding depression.

[Jmellano in reply to 2bats]

2bats, thnx for the suggestion, I have been a vegeterian for 10 years and a vegan for about 2 years mainaly for animal welfare reasons, but I do have eggs since i live in a slighly rural area where farms have real free range chickens, hence, happy chickens

[Lemmy1958]

I was diagnosed in 2015 and am doing well considering - I follow John Peppers advice on fast walking do 3 to 5kms 3 x a week at around an average pace of 10mins km - also have the Well Red helmet which I use every evening before sleep - Gut health is also very important as inflammation is a great source of pain.

[Jmellano in reply to Lemmy1958]

i used to racewalk a 12 minute mile in a 5K, now, i can barely walk 1/4 mile without having to rest becuase my fatigue is so bad, several years ago, i did the Well red coronet helmet 2x/day for about 8 months.

[CRMACK1948]

Dear girl,my heart goes out to you,after having such a busy and fulfilling life you have been hit by traumatic death of a loved one,and a condition that seems to grow many different heads.My husbands PD symptoms worsened dramatically over the first 3 years after diagnosis,with little help or advise from his neurologist.However,researching various supplements,exercise protocols,and red ligh therapy he has definitely improved.Your having “ brain fog” will make decisions far more difficult to take,so possibly finding something to help that problem would make it easier to face up to the other areas that are so challenging.The supplement calledLions mane,derived from mushrooms has a good track record in sharpening brain power,maybe that could be a good place to start on a gentle recovery.Also vitamin B12 can help energy levels,maybe enough to make simple tasks a little less fatigueing.

[Jmellano in reply to CRMACK1948]

CRMACK1948, thank u for your encouragment,i like your suggestions, but i am apathetic and lack motivation to try them. I will look into Lions mane

[20fatcats]

Hi. supporter of PD person here.

Sorry to hear you are having such a tough time.

This suggestion may not be right for you but may be worth a try.

You have had a very traumatic experience. May I suggest your exhaustion could be coming from deep sadness. Pushing your self to exercise may make this worse.It will feel so hard to do right now. Perhaps find a few things that used to interest you. hobbies or making plans for outings art or music or mixing with like minded people. Playing cards or joining a book club. These things can trigger natural dopamine releases and serotonin the feel good hormone. Do a little dance to music. It will see hard to start with but if its movement you love more energy will flow. At all costs full your days with fun things. reach out for support and spoil yourself. antidepressants can worsen things for some so you need to be careful and follow doctors guidance . It sounds like you need someone to take you to the park or beach or museum and enjoy the outdoors quietly even its in a wheel chair to take the stress out of walking. Hope this helps

[Jmellano in reply to 20fatcats]

20fatcats you also have good suggestions, but fatigue, apathy, lack of motivation reign supreme with me. however i am making it a point to spend at least 10 minutes/day sitting in the sun now that the nice weather is here in NY. You are right about the deep sadness, even though Steve has been gone over 8 years now, i miss him terribly. He helped me survive cancer in 2007 and he is not with me now to help me through PD.

[2bats]

I agree with CRMACK48 that you must take B12 as it is the only way to survive a vegan diet. However I would go further and say that you have to be young and fit to endure even a vegetarian diet. For a 69 yr old in poor health with PD a high fat low carb diet would be much more successful and better for your mental health.

[Jmellano in reply to 2bats]

thank you 2 bats, sad to say, I still think I was the athlete I once was. My b12 levels are good but I will look into b12 supplements

[faridaro in reply to Jmellano]

Many times serum b12 testing is not sufficient to determine deficiency, Check out this article: restartmed.com/how-to-test-...

[2bats]

I sympathise - I used to play Squash 8 times a week and now I’ve even had to quit croquet due to back pain!

[Jmellano in reply to 2bats]

pd is certainly a disease of loss

[Eddie129]

have you tried high-dose b1? It’s helped a lot of people. Daphne Bryan wrote a wonderful book. It’s on Amazon. It’s called Parkinson’s and the B1 therapy. It’s a must read. Perhaps it’ll help if you supplement with B1. Get the book to follow the protocol. Also search on this site. Many people have had success. I’m sorry you’re going through such a tough times. Reach out to any of us anytime. We’re all here for another.

[Jmellano in reply to Eddie129]

thank you eddie129. i have the book , am a member of FB group and tried B1, to no avail. i am beginning to wonder if i am treament resistant

[chartist]

The constant feeling of tiredness or fatigue, even after waking from a nights sleep, could be caused by obstructive sleep apnea (OSA) and OSA is very common in PwP. OSA is estimated to affect up to 40% of PwPs as discussed here :

parkinson.org/understanding...

Here is a relevant quote :

' Sleep apnea can be seen in up to 40% of people with PD. '

OSA among its many symptoms includes increased oxidative stress and elevated inflammatory markers as discussed here :

ncbi.nlm.nih.gov/pmc/articl....

Here is a relevant quote from the link :

' Oxidative stress and chronic inflammatory state are thought to be the main characteristic of pathophysiological changes in OSA contributing in consequence to the neural, cardiovascular and metabolic alterations. Oxidative stress in sleep apnea patients may be the main cause of endothelial dysfunction [44]. '

OSA is also thought to accelerate the aging process .

Two of the major factors driving the disease process in PD are elevated oxidative stress levels and increased inflammatory levels as discussed here :

ncbi.nlm.nih.gov/pmc/articl....

Here is a relevant quote :

' Inflammation and oxidative stress are recognized as important contributors to Parkinson’s disease pathogenesis. '

The combination of the elevated oxidative stress and inflammation from OSA and PD could easily contribute to your current state.

You mentioned you get the results from your sleep study this week and hopefully they are checking for sleep apnea. If they confirm sleep apnea, then a CPAP machine will be needed and a CPAP can reverse the symptoms initially caused by OSA. Reversing these symptoms means a reduction in oxidative stress and inflammation is likely :

medicine.missouri.edu/news/....

A relevant quote :

' Researchers from the University of Missouri School of Medicine have found that untreated OSA accelerates the biological aging process and that just one year of CPAP treatment can slow or possibly reverse the trend. '

If OSA is diagnosed, it can be a factor in exacerbating Parkinson's disease symptoms. Reversing it with a CPAP is likely to ameliorate the exacerbation, greatly reduce the constant fatigue and alleviate the brain fog you have described in so many words.

Please come back and let us know the results of your sleep study. If it isn't OSA then you will get other suggestions to help get you out of the state you are in.

Art

[Jmellano in reply to chartist]

art thank u so nuch for this info. While I don’t look forward to getting a CPAP machine, if the sleep study shows I have OSA, it would be such a relief, I meet with sleep doc Friday afternoon no to discuss results and I will report back. Thank you again for all this info

[chartist]

I have two friends with OSA and both said they will never be without their CPAP. They also said the technology has improved through the years to make the CPAP quieter and more comfortable. They said their fatigue was just unbearable pre-CPAP and now fatigue is not much of an issue any more.

Art

[Jmellano in reply to chartist]

that is good to hear, The fatigue is brutal. While searching for more info on OSA, I found that two other symptoms are frequent need to urinate at night and dry mouth, both of which I experience

[chartist in reply to Jmellano]

Well, you get your results tomorrow afternoon and won't have to wonder about whether it is OSA or not anymore. Let us know what your doctor has to say about the sleep study.

Art

[Jmellano in reply to chartist]

I am so discouraged,sleep study did not show apnea in the 3 hrs of sleep they could record. doc said she wants me to do at home sleep study to find apnea

[chartist in reply to Jmellano]

That's a tough break, but the home study may be more enlightening regarding sleep apnea. Even smart watches can only detect the possibility that you may have sleep apnea and then you still have to have the sleep study done and interpreted.

If the CPAP machine weren't so expensive, it almost seems easier to just try it and see if it helps, but having a proper diagnosis is probably the best and most accurate way to go.

Art

[Jmellano in reply to chartist]

thanx art

[Jmellano in reply to Jmellano]

the at home sleep study report said MILD sleep apnea

A neurologist who specializes in treating pd patients with pd related fatigue and sleep issues did not think the at home test showed anything monumental. He wants to see my blood iron levels.. back to the drawing board. My neuro still wants to me to get my autonomic systems tested. I am thinking that this is disease progression and I will have to live with this dreadful fatigue for the rest of my life. I am so weary of doctors, tests and taking meds, all to no avail.

[bassofspades in reply to Jmellano]

Hi Jmellano, Im looking at some of your past posts to catch up on your history. I am a victim of Obstructive Sleep Apnea and I know first hand the destruction it can do. It starts pretty subtley and can sneak up on you. If your sleep apnea is mild, you might want to try the CPAP for a test run. Not just for a few day. I mean for a month or two. It takes about 2 weeks just to get used to sleeping with the clumsy thing, but the benefits start appearing soon after and it can make a huge difference in your fatigue levels.

here's an example - I havent seen the end of any movie I watched at home since the time I was in my mid 20s till I got on CPAP. Now I have no trouble staying awake with the TV on and I can re watch all those movies and see how they all end!

I mentioned my 5 best doctors (Sunshine, fresh air, exercise, clean fresh water and proper sleep) and SLEEP is seriously a very important one. My pulmonologist, who is one of the smartest doctors I ever met, taught me that sleep apnea and parkinsons go hand in hand, one causes the other and vice versa. You may think youre getting 8 hours of sleep but if you have 5-15 events per hour, as in the case of MILD OSA, that means you stop breathing 5 to 15 times per hour.

[Jmellano in reply to chartist]

The sleep neuro was not concerned over the home study report. He had my iron lvls tested and they were in range. It’s doubtful I have apnea . My neuro thought my symptoms may be exacerbated by 1. sleep issues affecting my symptoms, hence the sleep study 2. Blood pressure issues, going for dysautonomia study in November or 3. Mood, hence antidepressants.. I am so weary

[chartist in reply to Jmellano]

I agree with bass that trialing a cpap may be worth the effort. On a related note, people with PD are often vitamin B12 deficient as levodopa seems to deplete B12 :

newsnetwork.mayoclinic.org/....

A relevant quote :

' "It may not be well-known in the non-neurology setting that high doses of levodopa can decrease vitamin B12 levels, which in some cases leads to peripheral neuropathy and also worsen balance," he says. '

' Vitamin B12 levels should be checked in patients with Parkinson's disease and supplemented if low, he says. In Mayo's movement disorders practice, it's common to start patients who are on levodopa with a vitamin B12 supplement. "This is usually a combination pill with small amounts of vitamin B6 and folate," he says. '

Further, low B12 levels can lead to anemia which also leads to tiredness, weakness and shortness of breath as discussed here :

mayoclinic.org/diseases-con....

Here is a relevant quote from the article:

' Anemia is a problem of not having enough healthy red blood cells or hemoglobin to carry oxygen to the body's tissues. Hemoglobin is a protein found in red cells that carries oxygen from the lungs to all other organs in the body. Having anemia can cause tiredness, weakness and shortness of breath. '

Further still, people with PD often have low B12 levels as discussed here :

michaeljfox.org/grant/relat....

Here is a relevant quote :

' Vitamin B12 deficiency can cause a number of neurological symptoms, including instability, neuropathy (which may cause numbness and tingling) and cognitive defects. Recent studies in Parkinson’s disease (PD) patients with neuropathy have shown that B12 deficiency is common. Also, we have recently observed that B12 levels decline over the course of PD. These observations have led us to hypothesize that concurrent B12 deficiency may contribute to overall decline in some patients. '

Simply put, B vitamins in general are beneficial for PwP and it is worth having your B-12 and B6 levels tested regularly in PD.

Art

[Jmellano in reply to chartist]

I have been told that the b12 level in blood test is not reliable, that we should be checking that MMA, homocysteine values are in range

[chartist in reply to Jmellano]

If B12 is low, those two are likely to be increased. Perhaps it is better to test all three levels if your doctor will do it.

Art

[Jmellano]

i will ask my PCP to add these tests for my annual bloodwork

[Rebtar]

My blood b12 normal but cobalt found to be low in hair test. Naturopath said that indicated low b12. Take sublingual, as at our age, we don't absorb as well in the gut.

[Rebtar in reply to Rebtar]

Hoping you have found some relief. I am also facing low motivation, I get what a bear that is. Dx in 2015 also...

[Jmellano in reply to Rebtar]

I think what helped me the most was rock steady boxing. Sadly, I am too fatigued to exercise much anymore. The honeymoon is over

[Jmellano in reply to Rebtar]

Rebtar dr. Mischley said she saw cobalt deficiency in PWP. Iwas deficient in that

[Rebtar in reply to Jmellano]

Me too.