Can I be fixed?

[Nippermcc]

My husband & I live 40 minutes from town among few neighbors so we are on our own. I have had PD 4 years now and not doing much better, even though I exercise, take medication, supplements, etc. I am often overwhelmed with despair that my life is over and maybe I should give up. Can I be fixed? does fast walking really help? do any exercises and meds at all help? I don't know what to do! cannot dress self, cannot get up or go to bed alone. need help in bathroom...need help getting in and out of car. Basically, my husband says I should just live in a nursing home but we're both afraid of how they would treat me!

[Nippermcc]

those were just a few of my symptoms. my feet freeze, I shake when I write... or eat... very little I can do without help...

[BUZZ1397]

Succinct statement of our shared conditions. Is it not a blessing that your husband cares for you that much that he is ready to meet your needs at home?. Love that man and be grateful every day you married well.

[Alemanda in reply to BUZZ1397]

Be grateful for that husband of yours. I lost mine to a heart attack 3.5 years into my journey with PD. That was in 2017. I am learning to cope, but scared.

[Lucal]

Maybe you should check your medicines. I know there Is no standard , but 4 years After diagnosis you should not be in so many troubles.

[Nippermcc]

thank you Lucal!

[pedserv]

I have found daily exercise and Paleo diet to be helpful. There's a book (and DVD) by David Zid titled FUNCTIONAL FITNESS FOR EVERYONE LIVING WITH PARKINSON'S. The exercises are graduated so the beginning ones are less challenging. I started out slowly but did some exercise every day. I now walk one mile, 3 to 4 days per week and workout with a trainer experienced with MS and Parkinson's people. I do take meds, but they are very dependent on an individuals needs and tolerance. There are ways to improve your abilities.

[Elya7 in reply to pedserv]

Thank you, this sounds inspiring.

[Xenos]

Hi Nippermcc,

First and foremost :

- check all that with a competent new neurologist - you shouldn't experience these symptoms 4 years only after diagnosis ;

- follow this group ;

- study carefully and do try High Dose Thiamine (RoyProp's pages on facebook, and here in the profile) ;

- go on : move, as much as you can. Walk, yoga, gardening... whatever is convenient - or possible - for you (yes, exercise helps).

There are other things you could give a try, Mannitol for example, or keto diet,

[Juliegrace]

What is your current drug/supplement regimen? Several months ago you were trying to switch from Sinemet to MP. Did you do that? Why did you want to? I also recall you were not working with a neurologist. Maybe it's time to find one. It seems like there are possibilities for you to pursue that have potential to improve your situation.

[park_bear]

Exercise helps me a lot. Also four years in. What meds are you taking, and how much?

Also, Qigong is not for everybody but it has also helped me a lot:

healthunlocked.com/parkinso...

[M1tz1]

So many thoughts and prayers with you, Nippermcc. 🌺

[LAJ12345]

Please try Hardy’s daily essential nutrients, Hardy’s greens and probiotics, eating gluten free and no sugar, plus lots of Veges. The Hardy’s products made a huge difference for my husband within days. ( he also takes the mannose, b1 and Restore Gold, extra b2, niagen which I am not sure if any of them help too but the real difference happened after starting the Hardy’s.)

naturezonehealth.com/produc...

[Rhyothemis in reply to LAJ12345]

Do you mean mannose or mannitol?

D-mannose is typically used for urinary tract infections (UTIs), on the theory is that it disrupts bacterial biofilms and helps flush out the bacteria. More interesting, however, is d-mannose's ability to increase regulatory T cell function and reduce inflammation:

ncbi.nlm.nih.gov/pubmed/287...

So, potentially quite a powerful supplement and I would be interested to know if anyone is taking it for anything other than UTIs.

[LAJ12345 in reply to Rhyothemis]

Mannose and mannitol are the same. He takes syncolein with the additive that stops wind.

[Rhyothemis in reply to LAJ12345]

They are not.

Mannitol is a sugar alcohol, C6H14O6.

Mannose is sugar monomer, C6H12O6.

[LAJ12345 in reply to Rhyothemis]

Oh, ok, sorry. He takes the syncolein which appears to be mannitol from the label.

[sharoncrayn in reply to LAJ12345]

The Hardy products are very good, but their Daily Essential Nutrient product is relatively expensive for most people (also in powder). Their Greens and Probiotics product is at least reasonable in powder form. Available online. Read the reviews before you decide.

[LAJ12345 in reply to sharoncrayn]

Yes that’s why I tried to replicate their formula by buying all the individual vitamins and minerals and other constituents that I could which didn’t seem to help him. I finally decided to give it a try as he was in a really bad way and 2-3 days later he improved so much it was pretty remarkable. When I added up all the individual supplements he was taking it didn’t cost much less than the Hardy’s product. It has a lot of ingredients in it.

[rhyspeace12]

Several people in our Parkinson's group love Rock Steady Boxing. They say it improves their balance and other good things.You definitely need a neurologist ,preferably a motion specialist. Our motion specialist is the first neurologist we could discuss options with. The rest were backing out of the office practically the minute we got there.

[Motherfather]

im sorry to hear that nippermcc well im 72 and have had pd for about 6 years now and live alone well exercise every day 7 days a week, i cook for 2 of my daughters who are healthy they have shift work so i cook there meals and bring it to them as they both work together,i try jumping out of bed every morning and most mornings i can do that,some of the things i take are madopar 4 times a day 200/50 thats the main one i take other things i take is the b1 lots of people are taking about also mannitol 2 teaspoons a day another one for pain is liquid magnesium its very good just rup it in the pain area 1 gram magnesiun tablet 1 amantadine capsule 100mg one doxylin 100mg but the most important for me is the getting down and pushing myself saying im not going to let it win over me pain or no pain.dont go into a home it will bring you down.your husband sounds as he will look after you.best of luck regards john

[ddmagee1]

I'm so very sorry to hear of your predicament! I have been where you are. It's important that you not despair and give up!! Being sort of isolated, like you are, perhaps, is not helping. I once lived in a small town, with only a GP, no specialists. I endured 5 years of symptoms, getting to the point where I needed help, becoming worse, similar to you. Additionally, I had fallen several times, with bad consequences. It wasn't until my daughter got me out of that somewhat isolated place, where she took me to the big city, where there was a regional hospital, and I saw a movement disorders specialist, neurologist, and neuro-pathologist, who confirmed diagnoses of Parkinson's and Ataxia. I was put on Sinemet right away, and another medicine, and then have been carefully monitored every 3 months since. Dosage has been upped, but it has made all the difference, with symptoms relief. I can dress myself, don't need help getting to and from the bathroom, or getting in and out of the car or bed. My stiffness, and pains, and tremors are minimal. That's not to say that I don't still have problems, because I do. Balance, constipation, swallowing, orthostatic hypotension are still problems for me, along with peripheral neuropathy, and a few other things. At least I have better mobility, and can get around, basically, better than I could. If I miss doses of the medicine, though, I revert back to having a rough time. So, I always take my medicines. Also, I do range of motion exercises every day, and follow a Meditteranean diet. I've lost 50 pounds, in the last 5 years, which helps me to be more agile. I try not to fall into the trap of apathy and depression, and despair. It's important in this battle with having PD, that it doesn't completely control me, rather that I have found a way to live with it, where I can still have a meaningful life, and have something to look forward to each day! Had I given in, I would not be where I am today. So, please, if you haven't already, find a reputable movement disorders specialist neurologist, who is able and willing to help you get back on track, to be the best you can be, in spite of having a difficult illness! Please keep us informed on your progress! Wishing you the best!

[Hidden in reply to ddmagee1]

New schedule, now I follow this regimen:

3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.

2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules

[Don_oregon_duck in reply to Hidden]

Hey Roy Prop, you referred to something that I had not heard before. You said "With a ER c/l eating time does not matter?" I am on Rytary, do I not have to work around my eating schedule?

[Hidden in reply to Don_oregon_duck]

I do not know about rytary

[Don_oregon_duck in reply to Hidden]

Rytary is a brand nameextended release c/l.

[JAS9 in reply to Don_oregon_duck]

I'm on Rytary for 4 years. I find that I still do have to watch my schedule but that it is much less of an issue because the C/L is being released constantly.

[Berylhorsey1]

Please, please look at Dr Constantini ‘s work with vitamin B1. I take 2000mg a day I. Four doses and my life has turned around. Build up slowly. It’s amazing, but have a word with your doc. My doc said it would do no harm even if it did no good, but it has made me feel so much better and got rid of several of my symptoms.

[jeffmayer]

I think the main thing is never ever give up you have to keep fighting and scrapping it is a shite condition and can at times be overwhelming exercise definitely is the key be it fast walking cycling or tai chi they all help and as hard as it is a positive attitude and positive thinking good luck

[JeanieBeanie]

My husband has had PD 25 years and is not so bad. I agree with the others that that seems bad for only 4 years with PD. I know everyone is different.You need to list you meds regime on here so people can help. Your husband needs to research a bit more for you like I have for my husband. This website is very helpful and it is good to know other people with the same horrible condition are willing to help.

[Meykat4]

Do your symptoms continually worsen even with everything you do? If so, perhaps you need a new neurologist. Maybe the diagnosis is wrong. Would be important to get a second opinion. My husband had CBD. His symptoms worsen no matter what he takes or does. I hope sincerely that you do not have what he has. Good luck. I wish tou the best. Katht

[Hidden]

New schedule, now I follow this regimen:

3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.

2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules

See my profile.

[James4K in reply to Hidden]

Roy from your time schedule for your C/L and B1 you take at the same time with no separation between the two is that correct? Im on C/L for the first time and i have been separating my B1 and C/L by thirty minutes, but that is not necessary??

[Hidden in reply to James4K]

That is correct. I also changed midday dose to midnight. Helps with sleep. I take dose roughly on a schedule. Not exactly the same time each day. For example, 6 am this morning, 1 am early this morning and 7 pm yesterday.

[James4K in reply to Hidden]

Thanks RoyProp!

[lhart6387]

If you are not already, I would see a therapist. My husband sees a Psychologist and a Psychiatrist and they have helped him immensely, he was also feeling very down and just wanted to give up.

[KERRINGTON]

There must be people on this site who have great doctors, neuros, etc who work in your state, or elsewhere. Going from doctor to doctor is exhausting, so get references from this group.

[amykp]

You do not need a neurologist, you need a Movement Disorder Specialist, preferably in a Parkinson's Center of Excellence...and you might need to drive to get there.

That doesn't mean you shouldn't try a clean diet/supplements/exercise...but FIRST you need a super competent doctor. There are a million drug combos and even surgeries...or clinical trials(!) that might help you but a GP will not be up on all that stuff.

[ddmagee1 in reply to amykp]

Good advice! That's what I did, and it made ALL the difference!

[LTT0019]

Dear Nippermcc,

First: I agree that you need to have a neurologist - more specifically a neurologist specializing in PD. You need some help with your medications ?. Hopefully you know you should not just stop and start meds and you should only adjust one thing at a time and make sure everything is ok before making another change. I do this with everything I take even OTC and vitamins, etc. Some things take one to three months before you see any change. (I have had a bad lot number of meds. They appear not to be working. My next refill will be OK)

Second: PD is a difficult diagnosis to receive. You seem to be isolated. This diagnosis has changed your life. Please consider some therapy. Find a support group. Medications can affect our mood and our state of mind. I was a little concerned with your statement "Basically, my husband says I should just live in a nursing home ". Don't forget that caregivers require support too.

Good Luck

[Mogul1]

I was diagnosed 10 years ago. Big change for me happened when I began taking Azilect, 1/day. Ask your Dr. if you haven’t already.

I believe there is always hope.

There are a lot of us on this forum that care about you.

[janers]

Courage and faith are most important. Whenever I feel despair about my condition, I usually find that I start to feel a bit better in the next few days, and that gives me the courage and faith to keep up with all these health practices. I honestly believe we are not given more than we can handle, so you can handle this. Just listen to the advice and take something from it. Change something in your practice, in your diet or exercise habits. I find exercise is the most important to change the way I feel. Best wishes