Need Advice: I was diagnosed 15 yrs ago... - Cure Parkinson's

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laglag profile image
23 Replies

I was diagnosed 15 yrs ago & have done fairly well up until the last few weeks. I've been doing Rock Steady Boxing for 12 yrs. I take 4 C/L, 2 Azilect, 2 Amantadine, plus a few supplements / day. All of a sudden one evening I started having uncontrollable tremors over my whole body including my head. It was so bad I wanted to go to emergency to get a sedative or something. My husband walked me around the house, massaged my back & feet & finally it stopped. A few days went by & I was ok & then they started again & since Christmas I've had this happen every day. I've been under some stress taking care of my dad for the last year but it's calmed down recently. My doctor is on vacation & I can't see her until March 14th. Another neurologist said to double my dose of C/L but to get me thru night I'm now taking 10-12/24 hr period. Now I also have pretty bad dyskensia. Does this sound like it's the PD or stress or ? I used to be able to get thru the night without meds. Any thoughts or advice?

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laglag
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23 Replies
Christin313 profile image
Christin313

Debbie, maybe when things seemed a little better with your Dad, you were still worried? It can be tough to turn off our concern for others. The holiday season, winter season, etc., also seems tiring, even when trying to minimize stress.

My Dad seemed to have recurring waves of tremor issues and I thought it could be that stress/tiredness started it, and then the concern over the increased tremors prolonged them.

I wish you a very happy 2019!

laglag profile image
laglag in reply toChristin313

Thank you for your thoughts. He's still not moving well at all but we're a little more organized and/or have a routine that works pretty well. I only go over there every other day now rather than every day. I thought the stressful feeling would get better, but I still worry about him when I'm not there. He's really good about trying to do things himself, and he does it with a smile, but he has broken rotator cuffs &torn biceps on both arms & neuropathy in his legs from a spinal stenosis operation he had on his neck & lower back. His neck surgery didn't seem to do very well. His neck was supposed to only drain a small amount but drained for days & days. They even went back in to see if they left an instrument or something in. That was back in the late 90's but they never figured out why it drained so much. Now he has all these problems with weak muscles & tendons & can't walk. He never has high blood pressure, high cholesterol or high sugar. The doctors say he has osteoarthritis. He has no pain except a little in his neck. One more thing, they thought he had NPH so they put a shunt in his brain about 2 years ago & it did nothing to help. We haven't found a doctor yet that can figure out what is wrong with him. They constantly tell him if he had pain they could probably figure it out?? This change in him has happened in the last year. Last

Jan he was driving just fine & lived by himself in a condo. In Mar he crashed into the neighbor's garage door, I had to take away his keys and move him to an assisted living facility. He was using a rollator at that time but now he's in a power wheelchair & cannot transfer himself to a chair, bed or toilet. He cannot dress himself or comb his hair. He can brush his teeth and can eat, but it's a little messy but he hasn't given up. He's still doing physical therapy 4-5 days a week & he also does the exercises on his own. He's tried 5 or 6 different therapists & none have been able to figure it out. None of the doctors can figure out what is causing all this muscle weakness or balance problems. His attitude is remarkable, he still has a smile on his face everyday. Everyone knows stress makes PD worse. I don't feel that stressed most of the time but I'm sure I am. My symptoms, mostly the tremors went from not bad to horrible. Is it the PD or stress? I'm thinking by all your comments it could be mostly the stress causing the PD to change a little? I've never heard of PD changing that fast. Thanks again! It helps to brainstorm.

Debbie

Farooqji profile image
Farooqji

Try Kemadrin after taking consent from your neurologist

laglag profile image
laglag in reply toFarooqji

Thanks, I'll check it out.

Kevin51 profile image
Kevin51

That is really tough. Tremor does not respond well to C/L so ramping up the dosage to control it is not so good. Even small contributions to reducing tremor may allow you to reduce your C/L and avoid the dyskinesia so maybe CBD oil might help. I take one ibuprofen (400mg) at night - that's a low enough dose for me not to worry about GI bleeding but your mileage could vary. Stress reduction definitely helps but I guess that it easier said than done when symptoms get much worse. Your neuro should be able to help with avoiding the dyskinesia when you can see them. Good luck!

I hope you find relief.

laglag profile image
laglag in reply to

Thank you so much!

And thank you all for your thoughts & advice.

adrienneb profile image
adrienneb

Dear Debbie: I am sorry to hear about your recent difficulty, and wonder if it could be related to stress as others have suggested. Another possibility that is always brought up when there is a sudden change in one's Parkinson's symptoms is that of an infection, particularly in the urinary tract. I admire your persistence with Rock Steady Boxing. We have started a local group here, and the Indianapolis training was an awesome experience. Take care. Best of luck in figuring out what it is wrong. Adrienne

laglag profile image
laglag in reply toadrienneb

Thanks Adrienne. It was so nice to meet you. I hope you are doing well.

RS313 profile image
RS313

CBD Oil with a small amount of THC will help.it helps me relax and rest through the night

laglag profile image
laglag in reply toRS313

Thanks. I tried in the past but not sure if it had THC but very little help?

RS313 profile image
RS313 in reply tolaglag

You would need to get it from a medical dispensary it has helped me very much

NRyan profile image
NRyan

I know when I cared for my dying sister, the stress didn't hit my body until after she died. This is a good point to bring up....be careful when in a stressful situation. You think you are handling it well, but you really can be holding that stress in until your body is able to have a break. It hits you like a ton of bricks.

Basih101 profile image
Basih101 in reply toNRyan

This is so true!

laglag profile image
laglag in reply toNRyan

I think it has. So sorry about your sister.

NRyan profile image
NRyan in reply tolaglag

Rest, focus on nutrition, take your supplements, meditate. I am just getting back into taking control of my diet, I wish I hadn't let it slip as much as I did.....or at all. Exercise is next to get back on. I think it is imperative to not change your life as much as possible. My mom now has the same cancer. I am there for her, but she doesn't need much help yet. I know I can't help her like I did for my sister. I know my limitations now. I know I am not willing to let me caring for her impact my health negatively. I just simply can't help nearly as much. :( She has 11 children remaining....hopefully some step up!

laglag profile image
laglag in reply toNRyan

You are amazing! Thanks for the reminders on diet & meditation. I find myself making excuses for not meditating. My diet is not like it should be either. I maintain my weight but I vert rarely eat veggies & I eat out too much. My mom passed away from cancer 10 yrs ago a few months after I had a double mastectomy due to two different breast cancers. I just had my 10 yr anniversary & things are clear! I have one brother & he lives in CA & I live in Indiana. What supplements do you take?

NRyan profile image
NRyan in reply tolaglag

I'm sorry for your loss. Losing a parent is so hard.....actually so is losing a sibling. Cancer sucks! I see Dr. Mischley and she has me on (based on blood tests) glutathione, D3 (I take K2 with it), & omega 3 fish oil. I also take magnesium threonate, NAC and B1, B12. I use CBD only oil to help with sleep if I need it. No dairy, meat/eggs or soy/wheat/oat. Little alcohol. Minimal sugar. It sucks but you do get used to it. I am at the beginning stages...although I can feel it progress....and I want to stay here as long as possible. I am going to add the fad glass of celery juice every morning to see what that brings. What is amazing is that so many people are eating a plant-based diet now for health reasons. It helps to encourage me to stay on it.

laglag profile image
laglag in reply toNRyan

Thank you for the info. It's always been tough for me to stick to a proper diet, especially with a lot of veggies, but I'm going to try & make that my next goal. Did Dr Mischley say why fish oil & not krill oil? I've read that krill is better. If you don't mind me asking what state do you live in & how long have you been diagnosed with PD?

4000Nights profile image
4000Nights

Tremors cause anxiety.

Stress and anxiety produce adrenaline.

Adrenaline cause tremors to be come more pronounced. You may even have noted this after boxing.

Its a vicious cycle!

Something to try in lieu of increasing your C/L: a beta blocker Nortriptyline before bed. It relieves anxiety, helps you sleep and also has been shown to slow progression.

Works for me!

ConnieD profile image
ConnieD

Have you stopped or changed any of your meds ?

laglag profile image
laglag in reply toConnieD

No I haven't. Some things with aded responsibilities for my dad have changed but my meds have changed I haven't been exercising as much or as hard as I uses to. I will write more this afternoon & explain a little more. I need to figure out if this is the PD or anxiety or both. I went from good to bad so fast

Gioc profile image
Gioc

hi laglag

fatigue, unmanifested flu, cold, worry, irritation, reflux, a protein-rich diet, in my opinion can worsen the symptoms much, but temporarily, Possible solution IMHO: Minor effort, multivitamin with minerals, light daily walks watching so extrovert the attention , correct diet and time. I do not see that the PD progresses so fast so it must be something else that determines the condition and must be resolved when finding or not.

Take care to yourself,

gio

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