Caregiver to husband with extreme fatigue

[Tagalong]

Caregiver of husband diagnosed in March. Just a newbie learning the ropes, and taking one day at a time. It is taking 6 months to get an appointment with the movement disorder at Duke, my husband is very discouraged with all the fatigue, fortunately he doesn't have a resting tremor but all other symptoms. He is taking Sinemet 25/100 just upped to 5 times a day. My question, does the fatigue ever subside, he walks twice a day and is taking Tia Chi.

[aspergerian]

I take 5 mg per day of methylphenidate, It helps,

[Babowen898]

Where are you leaving cater, Tagalong? My hubby went to Duke Movt Disorders Clinic for a time. Which Dr are you hoping to see?

[Babowen898 in reply to Babowen898]

That should have said where are you located....

[Burlingtongal]

We all experience PD differently. I was diagnosed in October, 2016. I take the same dose of Sinemet, but only 3 times a day. My fatigue has subsided quite a bit. I don't have tremors, but plenty of other symptoms. I have just started Rock Steady Boxing twice a week in Greensboro. I know there is one in Durham and I think Cary (not sure). Your husband might want to look into it. I'm meeting a lot of others with PD and the coaches are wonderful. They encourage you to fight the disease and it's hard work, but it's fun. It helps to be supported by others in the same situation.

[Tagalong in reply to Burlingtongal]

Thanks Burlingtongal

[Motherfather]

hi tagalong well for having pd for such a short period he should be taking 3 tabs per day i think 5 is 2 many for such a short time.if it was me as his doctor i would give him 3 sinemet and 1 azilect per day.i take 3 madopar 250/50 per day and 1 azilect it makes a big differents the azilect.i hope this helps you a bit im 70 and have had it for 5 or 6 years now..i tried sinemet it did not work for me.john.

[Tagalong in reply to Motherfather]

Thanks Motherfather. He started on 3.

[rhyspeace12]

My husband was very fatigued. He had tests of his lungs and heart. It turned out to be anxiety and frustration, trying to do our income taxes he had been working on for months. The day after he turned them in, he stopped being so tired and confused. Parkinson's slows everything down, including the brain that controls it all.

[Astra7]

I find azilect really helped with the fatigue. Takes a little while until the side effects go away, but worked for the fatigue straight away.

[Mjm012 in reply to Astra7]

What side effects did you experience with Azilect?

[Astra7 in reply to Mjm012]

Hi. It was so long ago I can hardly remember! I think it upset my stomach a bit but now it’s totally fine. I’ve been taking it for 3 years now. Almost no progression but I take a lot of supplements as well . (NAC, Manitol, magnesium and PEA).

[Islandhappy]

Also waiting six months for a Duke appt. and diagnosed in march. I have had some benefit from two things. Green tea and sublingual drops of vitamin b 12 and b complex for fatigue.

[Tagalong in reply to Islandhappy]

Thanks Islandhappy, I'll give it a try. He's not fond of green tea but said he would drink it. I'm an Island happy girl also.

[PDWife60]

In our experience, Parkinson's, stress, and fatigue is circular. Stress triggers Parkinson's; Parkinson's slows the brain; and both of them cause fatigue. The more fatigued you feel, the more stressful the situation becomes, and the more pronounced the symptoms. My husband has Parkinson's. We retired in 2011 when work had become so stressful for him that he could hardly walk from the car to the office or into the house at the end of a day, When he got home, he would stumble to the bedroom and sleep for 1-2 hours. He also took Tia Chi, which helped, but I was amazed and relieved at how much healthier he was after he retired! I do whatever I can to reduce his stress, and it makes a world of difference.

[Tagalong in reply to PDWife60]

Thanks PDWife60. We are caregivers for my elderly parents, my mom has IBM, and my dad congestive heart failure. This can be very stressful at times but we try to keep that level as low as possible.

[Motal]

Tagalong and Islandhappy

I ran in to the long wait syndrome there too, even after the initial appt. I gather they are very busy with DBS surgery there but as an unlikely candidate for that, it didn't seem worth the wait for here-snd-now care.

Happily, Duke is not the only game in NC (though some of its basketball fans might think otherwise.) A dozen miles away, there is also a Movement Disorder Clinic at UNC-Chapel Hill. Appts w my neuro there seem long enough and are about more than tweaking meds. (Happy to share more if you drop me a back-channel msg here.)

I'd echo some of the posts above. Walking and tai chi have their benefits, but it'd be good to add some forced exercise such as the biking, or the explosive punching and boxing's cross-body moves that rotate a torso.

Also, are you getting any Physical Therapy? I see a PT trained in Postural Restoration and the exercises make an enormous difference in managing my PD. (Mine is the non-tremor kind, which if I read your opening post correctly, T, may be similar to your husband's. )

[Tagalong in reply to Motal]

Thanks Motal, we are also considering ECU in Greenville. Hopefully the wait won't be as long. I do understand that seems to be the norm, we are in Wilson.

[Tagalong in reply to Motal]

Not doing PT right now, he has arthritis in his back and is getting injections, PT was put on hold for this. I will say after he started the Sinemet his back pane was relieved some.

[rhenry45]

Exercise every day will help especially cardio. I purchased an oxygen fitness system that really helped me. liveo2.com/ I only do about 15 minutes of jumping ( like I am doing a jump rope) and I use the oxygen mask with it and the oxygen tank from liveo2. My stamina increased dramatically and it only takes about 15 minutes a day. This is the way to go if you have the money to buy the basic system.

[Marg52]

Hello my husband also is on senament he. Was take them five times a day too, we cut it down to three times a now his not so tired. Ask his doctors first to make sure he can do that.

Marge

[Tagalong in reply to Marg52]

Will do, thanks.

[park_bear]

You have to experiment to find what helps with the fatigue. Amantadine is one thing to try. Selegiline also worth a try.

Since he is already acquainted with Tai Chi I recommend taking a look at Qigong. My Qigong story here: healthunlocked.com/parkinso...

[Tagalong in reply to park_bear]

Ok thanks, I'll check into those.

[Islandhappy]

Seeing new neuro at ecu. Dr. Lee. He spent 2 hours with me. Told me that coffee is being researched for its pd benefits. You can add flavored herbal tea to the green tea. We make a jug for iced tea.

[wifeofparky]

My husband was on Sinemet, selegiline and Zoloft. Depession can also add to fatigue symptoms. Androgel gel was also started by his urologist. It helped also. Taking a B complex supplement instead of just B12 is a good start. You need all the B's for it to work the best.