How are you doing Compared to last year

[TheresaCurley]

How are you doing compared to last year?

This past year my energy level is going down, down, down. Last year at this time my daily routine was 1. go for a short walk in the morning. 2. do a little housework. 3. paint pictures for the better part of the day.

But now I can not do all those things, I have to pick which I want to do. If I go for a walk I'm usually too fatigued for most of the day to do anything else and the same goes if I chose to do a little housework or paint pictures for an hour.

Not so long ago I was busy all the time but now I don't have the energy to do much of anything. Sometimes my energy level is so low just sitting up reclining makes me tired and I watch television laying down.

Not saying I'm sleepy because I'm not...just fatigued. I'm 68, only very slightly overweight and though I have other health conditions besides PD all of them are well controlled and I have had them a long time and never pulled me down like the PD has. I do take B12 shots monthly. I just saw my heart specialist for my annual check up and he says my heart is in great shape and the valve regurgitation is only mild.

[BUZZ1397]

That much change in activity over a year would be concerning to anyone. I have continued the few morning supplement changes I made on suggestions posted by Silvestro and my function has improved over the past year. Silvestro suggested some Cal/Mag, vit C, MP and CoQ10...etc. based on his personal therapeutic results and I tried some of those and have continued in my own way. It has helped. Sometimes too much of a good thing causes fatigue. For example if I am taking too much Vit D3 I get leg heavy and lose energy. You take a vit D supplement don't you? Have you had the calciferol level in your blood tested? I am too ignorant to suggest anything else. Just hope for you that you find some simple change that is a way to reverse the tiredness trend.

[TheresaCurley in reply to BUZZ1397]

Yes I take a doctor perscribed Vit D2 supplement once a week and have my blood checked for Vit D every 3 months. It has been in the normal range yet still on the low side of normal. Thanks for the thought.

[Astra7]

Last year I had not been diagnosed.

I now feel a lot better all round with azilect, magnesium and NAC as long as I don't get stressed.

Much more energy and left leg almost totally relaxed.

[TheresaCurley in reply to Astra7]

This is good to know. I had not been diagnosed yet last year either however I was working with my neuro and GP to try to get a diagnosis. The neuro said I had low B12 and that was causing my issues. Some of them cleared up after I started getting B12 shots but not everything. I stopped going to that Neuro because he was so insistent that the B12 was all that was wrong. It wasn't until early in 2016 that my tremors were bad enough for my GP doc to consider PD and it wasn't until August 2016 that my doctor decided to try Sinemet -- which pretty much stopped my tremors and that is how I was diagnosed.

[Skymom2008 in reply to Astra7]

How mag do you take?

[Astra7 in reply to Skymom2008]

250mg before bed.

[Fredzu]

Do this Theresa, compare the past with one thing that is positive. Find it. It's there right behind the lack of energy. Some would call it a Thought.

Ready, Set Go.

FJohn1

[Serenity_finaly-1]

OK Hmmmm Now how do I ask this. Theresa I know or at least I think I know, that you take 100 mg of Zoloft a day for anxiety. Have you had an increase in Body Density since taking it. I ask because something has changed my metabolism, I am 25 lbs heavier and the weight just kept coming on. At 6 feet and was 164 lbs now 187lbs in about 6 months.

[TheresaCurley in reply to Serenity_finaly-1]

It's cool you can ask about my weight. I'm 5'2" and I weigh 138 pounds. I actually lost weight this last year. Two years ago I was 170 pounds (yes that's fat for my height) and I have been very slowly going down. :->

[Serenity_finaly-1 in reply to TheresaCurley]

Thank You

[etterus in reply to Serenity_finaly-1]

Are you on Remeron?

[TheresaCurley in reply to etterus]

No, I was once on Remeron etterus but I have been off it for a long time now. But thanks for the thought. That stuff makes me eat like a pig, that is how I originally got to 170lbs. I've been going down since I stopped it.

[etterus in reply to TheresaCurley]

Two years ago prior to DBS I was on Remeron. I was actually down 138 pounds due to dyskinesias . After DBS my weight shot up to 165 pounds in six weeks I had to stop taking it.

[stevie3]

Hi Theresa. This is not meant to sound smug. I was diagnosed more than 2 years ago and today, everyone says I look better than I did then. But it took a while to find the right combination of medication, exercise, supplements and rest. So, I take aziclet, 6mg ropinirole, I go to the gym, I do the PD warrior programme, I take Nac and other stuff, including Theanine, emergen C and melatonin for sleep. Sometimes I nap for ten minutes after work. I work three or four days a week. My energy levels are, mostly, really good.

It's taken me a while to get there and sometimes I have bad days - in fact, I'm having one today because I'm very stiff. But mostly I can get on with my life - I saw my neuro yesterday who said he doesn't need to see me for a year although if I need to, I can see him earlier. He's given me headroom to go up to 10mg ropinirole should I need to. That pleases me because I feel he's a partner in my healthcare, not the manager of it - that's me. The healthcare professionals don't advise on exercise or supplements and sometimes that's the missing piece of the jigsaw.

[TheresaCurley in reply to stevie3]

Sounds like you have it together. I'm definitely not there yet.

[stevie3 in reply to TheresaCurley]

No, but you will. Research and experiment. It takes a while to find what works for you. I'm not saying that PD doesn't affect my life but there are some workarounds. I swear by emergen c and NAC.

[ryanJames1 in reply to stevie3]

What is NAC? I have just started on CBD oil as well as Mucuna , tremor is much improved the last couple of days hopefully this continues

[stevie3 in reply to ryanJames1]

N-Acetyl-Cysteine: news-medical.net/news/20160...

If you put N-Acetyl-Cysteine into the search engine on this forum you will find quite a few threads.

[ryanJames1 in reply to stevie3]

Thank you have ordered some

[stevie3 in reply to ryanJames1]

Don't expect instant results - give it some time. I edited my list of supplements recently because it was getting ridiculous but NAC is top of my list, with the emergen

[ryanJames1 in reply to stevie3]

As of the last few days great! I have added Chinese herbs back with Mucuna and recently added CBD last week. The Mucuna is good but the addition of the herbs and CBD has really helped the tremor. This time last year I had only just finished full time admin work and just was doing cleaning for holiday let. I also clean my sons place now and try to do a little Pilates daily and walk the dog don't always make it but rest is good too . Probablyhad PD at least 3 years prior to diagnosis earlier this year so at nearly 62 going well I think hopefully the tremor stays stable I'm a bit like you can't afford to take all I'd like to so have to decide what I think is most helpful you sound like your going well? Better than last year?

[Bailey_Texas in reply to TheresaCurley]

Took me 8 years to get it right. Exercise i believe does not reverse or slow down PD. It makes you stronger, have more energy, helps your attitude, gives you something to talk about other than PD, be around motivated people. All this makes it easier to get though the day.

I am better now than a year ago. I am now retired and am more active. I do not have any depression. Move better. Only thing not better is sleep i get 3 or 4 hours a night.

[TheresaCurley in reply to Bailey_Texas]

I average around 5 hours a night and have not been able to take daytime naps just because I can't fall asleep.