PD and Fatigue: My husband is probably at... - Cure Parkinson's

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PD and Fatigue

arwenmark profile image
47 Replies

My husband is probably at the beginning of stage 3 and his biggest problems are extreme fatigue. He can only walk half a dozen steps before being completely out of breath. He also suffers from a lot of coughing.

I was wondering how many of you have fatigue as a Major symptom and how do you deal with it?

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arwenmark profile image
arwenmark
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47 Replies
Beckey profile image
Beckey

I walk at a normal clip -- for about a half a block. Then I slow down considerably. I don't get out of breath, but I feel like my legs are going to give out. I do OK in my exercise class for the most part but walking is a real trial and I haven't stumbled upon a coping mechanism (yet).

Say, I wonder if it's possible your husband might have a low-key respiratory ailment that could be contributing (and that could be fixed)?

Lionore profile image
Lionore in reply to Beckey

I agree with Becky. My fatigue increased significantly from a bad cold that I picked up following long distance flights. I now find that exercise at my previous level is more challenging.

Espo profile image
Espo

Fatigue is a major problem for me - no answer yet. If you find one, let me know!

Abdiqani profile image
Abdiqani in reply to Espo

In fact we know the deleterious effects of PD and generally appalling medical condition across the globe particularly accumulate in western countries . PD has different stages start from the cardinal symptoms such as tremor , slowness movement and rigidity . But can sometimes begin from digestive problems with appear non-motor disturbances although it is surprising phenomena and still investigating . Apart from that , fatigue is a part of progressive disease in cognitive functions problem as it develops busy the brain to analysis all the regular information executive control which is so called Parkinson apathy . Therefore it is important to do exercising , trying to get regular sleep and avoid lonely or Isolation , inform and consult with your doctor any new occurrence of condition . Furthermore keep your diet balance with eating plenty of fruits and vegetables .

Hope you well ! .

Fontaine profile image
Fontaine in reply to Abdiqani

My husband has always had digestive problems, diagnosed with gastritis, then ulcers, always prescribed antacids. Antacids include aluminium, long term use of antacids must mean an increase in a heavy metal in the brain, is this not a cause? He's never been gregarious, had few friends and doesn't want to see anyone which in turn is making me depressed. Life at the moment is hell and I see no way out other than to have him cared for elsewhere which will in turn makes me feel guilty so can't do it. Something will have to force me to do it, probably my health. Doctors and nurses not interested, far too busy dealing with general illness which has a cure. PD Nurse never visits.

Abdiqani profile image
Abdiqani in reply to Fontaine

Actually this is stressful situation without help of caregiver and also your husband who become desperate as a result of the disease . But naturally and psychological well-being is important rather medication , because many diseases become worsen due to stress and with no virtue and hopeless . So keep to calm him . For permission tell me your email I will send you a book concerning how to deal with this condition .

Fontaine profile image
Fontaine in reply to Abdiqani

Don't want others to have my email address, is this a private message service.

Abdiqani profile image
Abdiqani in reply to Fontaine

Yes as I think about this book , it is all about how you deal with Parkinson disease . Here is my email

Abdikani_22@hotmail.com

enjoysalud profile image
enjoysalud in reply to Abdiqani

If it's a helpful book for PD why be selective? Why not give the title here for all to review?

Abdiqani profile image
Abdiqani in reply to enjoysalud

for your request , here is title Caring and coping with Parkinson . That is the title of the book published by Parkinson Foundation .

enjoysalud profile image
enjoysalud in reply to Abdiqani

Thank you....it is kind of you to share and I appreciate the name of the book.

Espo profile image
Espo in reply to Abdiqani

parkinson.org/sites/default...

Abdiqani profile image
Abdiqani in reply to Espo

Absolutely you have it , you will get more plenty information about how to tackle Parkinson disease as a caregiver to your family and at large community .

Manli profile image
Manli in reply to Fontaine

Yes, this is a private e-mail address. Thank you.

Manli profile image
Manli in reply to Abdiqani

My email address: manliwang@cogeco.ca

Thank you for your help!

RobertoOcana profile image
RobertoOcana in reply to Fontaine

Highly recommend that you seek a counselor ASAP

RobertoOcana profile image
RobertoOcana in reply to Abdiqani

I'm sorry I don't understand what you are trying to convey

Abdiqani profile image
Abdiqani in reply to RobertoOcana

I just want to address general health advice for you .

Fontaine profile image
Fontaine

Fatigue was the very first sign of PD for my husband, then slow left leg flopping down each step. Doctor if he knew didn't let on, but it got steadily worse over the years, couldn't turn quick enough and began to fall down. Had to ring for ambulance to get him back up, he then realised he had to slow down, turn slowly hanging on to things, now has to use a frame and indoor electric wheelchair. If he falls and breaks a leg, hip, he will have to go into a Care Home so be warned, have solid objects close by to grab on to. He can't exercise as that drains him of any energy he did have, humid low pressure weather makes him worse, cold more energy. Says low pressure adds weight to his back pushing him down which makes sense its called gravity! without it we'd all fly off the planet but not good news for PD sufferers.

Abdiqani profile image
Abdiqani in reply to Fontaine

In fact we know the deleterious effects of PD and generally appalling medical condition across the globe particularly accumulate in western countries . PD has different stages start from the cardinal symptoms such as tremor , slowness movement and rigidity . But can sometimes begin from digestive problems with appear non-motor disturbances although it is surprising phenomena and still investigating . Apart from that , fatigue is a part of progressive disease in cognitive functions problem as it develops busy the brain to analysis all the regular information executive control which is so called Parkinson apathy . Therefore it is important to do exercising , trying to get regular sleep and avoid lonely or Isolation , inform and consult with your doctor any new occurrence of condition . Furthermore keep your diet balance with eating plenty of fruits and vegetables .

Hope you well ! .

Abdiqani profile image
Abdiqani

In fact we know the deleterious effects of PD and generally appalling medical condition across the globe particularly accumulate in western countries . PD has different stages start from the cardinal symptoms such as tremor , slowness movement and rigidity . But can sometimes begin from digestive problems with appear non-motor disturbances although it is surprising phenomena and still investigating . Apart from that , fatigue is a part of progressive disease in cognitive functions problem as it develops busy the brain to analysis all the regular information executive control Parkinson apathy . Therefore it is important to do exercising , trying to get regular sleep and avoid lonely or Isolation , inform and consult with your doctor any new occurrence of condition . Furthermore keep your diet balance with eating plenty of fruits and vegetables .

Hope you well ! .

Bailey_Texas profile image
Bailey_Texas

In year 8 of DX i suffered from fatigue. I could not stay on my riding mower for more than 15 minutes without stopping to rest and walking more than 100 feet was hard. I had given up eating in public a just could not cut meat or raise a fork without dropping it or the food. I could manage to work 8 hours a day but nothing else.

Then i started taking C/L (carbidopa-levodopa) and things changed i had more energy and felt better all around. Then i started crossfit and today (2 years later) i live a full life almost pd free. I can run 2 miles. I am still doing Crossfit 5 times a week. I had to retire due to stress and that also helped.

So it is possible to improve even after 8 years as i did. The right meds and extreme exercise did it for me. I have no other problems with my health only pd to worry about.

The last time i stopped my meds ( 2 months a go) my hands looked like claws stiff and curled in and of no use to me. I could barely walk more than a few feet.

racerCP profile image
racerCP in reply to Bailey_Texas

Hi Bailey,

As you know I am a great admirer of yours and I wish to ask you several questions.

I am 76 and 3 years post-DX. I am in generally good to excellent health, as you seem to be. I have, 3 months ago, started medication. I have also, all of my adult life been an ardent exerciser, swimming a mile and running 5-7 miles a day until my early 70s and I presently walk, vigorously as an exercise, 5 or so miles 5 times a week and exercise at least 2 hours extra a day in various classes. I lift, low weights, nothing like crossfit, two days a week and do interval training 2 days a week as well as dance classes and aerobics.

My questions: I am up to 1/2 a pill Sinemet 3 X a day and working up to 3 full tabs a day, but slowly. It has taken me 3 weeks to get to the 1/2 tab 3 x a day. Can I add selegiline along with the sinemet when I don't think it is working or should I just go to a full pill and see how that goes? I take 25/100 strength. Also, is there such a thing as too much exercise without allowing for recuperation time? I usually have lots of energy but find that my concentration and ability to organize lacking....executive function deficit, I guess.

Thank you for taking the time to answer my questions.

Bailey_Texas profile image
Bailey_Texas in reply to racerCP

This is a quote from a web site

drugs.com/cdi/selegiline.html

"Selegiline is a monoamine oxidase inhibitor (MAOI). It works by prolonging the anti-Parkinson activity of levodopa, which may help to slow the progression of Parkinson disease. Selegiline has no anti-Parkinson effects of its own and must always be given in combination with levodopa/carbidopa."

As far as sinemet i take 18 (eighteen) 25/100 every day along with 1 6 mg requip.

So with that said adding more sinemet should not be a problem.

As far as too much exercise as long as you are not suffering injures do what you feel like doing.

Keep moving

racerCP profile image
racerCP in reply to Bailey_Texas

Thank you. The answer I was hoping for as I love exercise and will be upping my dosage on an as-needs basis.

rhenry45 profile image
rhenry45 in reply to Bailey_Texas

At that level of sinemet don't you have bad dyskinesia?

Bailey_Texas profile image
Bailey_Texas in reply to rhenry45

yes

but not very often and always at night at bed time. A very small price for what it get from the meds.

tudorwood profile image
tudorwood

Hi, my Wife was recently diagnosed with mild Parkinson's, she has been very ill for two months with a dry cough, sore chest and fatigue, after weeks of going back and forth to the Dr she was admitted to hospital last Wednesday with Pneumonia, so get your Dr to check. Andy B

TheresaCurley profile image
TheresaCurley

I have fatigue but no where near as bad as your husbands. I usually can go for about a half hour doing things around the house before I need to rest. I have never heard of coughing as a PD symptoms and I think it would be wise to get his cough checked out by the doctor. Maybe not all his fatigue is PD related.

arwenmark profile image
arwenmark in reply to TheresaCurley

He has had the cough as long as he has had the PD which is about 4 years. They have said it is related to aspiration of saliva into his lungs.

racerCP profile image
racerCP in reply to arwenmark

coughing is a classic PD symptom and is caused by improper swallowing, a major problem in PD. I suggest you consult a speech and swallowing expert for help.

arwenmark profile image
arwenmark in reply to racerCP

My husband has had a swallow study, and he does see a speech therapist. The cough is from aspiration.

TheresaCurley profile image
TheresaCurley in reply to arwenmark

I learn something new every day arwenmark.

Niludi profile image
Niludi

Yes PD effects the walking,I just walk about 10metres and my legs start to feel like jelly.Then when I do walk I get stared at because it looks like I M drunk, and now I M starting to get frustrated,day before yesterday I couldn't even slice one piece of bread,I actually picked up the chopping board and threw it across the room, swearing and yelling so out of character of me,I hate going out now .luckily my PD nurse is brilliant.Butterly don't worry about your husband it's very common it's the embarrassment of it, just imagine being independent then next you have to ŕely on others. Yes the coughing I find especially at night is to keep having sips of water.that way the coughing will ease off,coping is difficult nd every individual is different.fatigue syndrome very common with PD I think everyone I think PD has fatigue, some days I just want to sleep all day,.

Ñiludi

Lincpolio profile image
Lincpolio

My husband has Post Polio Syndrome as well.. fatigue a symptom here too.... I have this as well. What we have to do is to pace and rest activities. Do a bit, rest a bit, do a bit more and overall you actually achieve far more. Use any aid or assistive device including asking someone for help for part or all of the task... and dont waste energy .. Save what you have for what you want to do most. OK its not easy believe me.

I have been a policewoman, lifeguard and swimming teacher amongst other jobs and to start using an electric scooter twenty years ago next March was tough... but I have been miles and miles on this and done so so much more. Watch folks faces in a museum when you are sitting looking at items and not having to carry your bags.... and at a large antique fair or car boot sale... and it is so good to do all the town, all the Mall, all the Supermarket rather than just the one shop. Pain and fatigue levels are less.

Hubby has an electric wheelchair because falls and damage to shoulders made using his full length leg caliper and special shoes almost impossible. Too difficult to bend to lock and unlock, not enough energy to lift left shoulder to swing left leg through and the weight lifting to sit on riser recliner or rest on bed.. too heavy. Richard has had Parkinsons symptoms since 1993 and diagnosis since 31.12.2000. He is out in his workshop now and does what he can hobby wise and his PA helps with other stuff when working.

Hope this helps... we fully understand that making changes like this can seem a downward step but when you see the change of what you can now do and the lower pain and fatigue levels.... managing life is now better than before.

karolmilk profile image
karolmilk

I walk 45 minutes every day and am tired every step but continue to do so since I believe exercise slows down the progression . I also do two water aerobic classes and swim 7 laps twice a week. I find I swim easier than walking but tire and have to stop. I have been diagnosed since 2010 and am taking 4 25/100 carbidopo levo. Same amount I was taking in 2010. I take a nap in the afternoons most days which allows me to do light household chores late afternoon. I avoid stressful social situations because I don't have the energy and get irritable. I am more accepting of the fact that I have limitations than when I was first diagnosed .

Skymom2008 profile image
Skymom2008

I am the same way with my walking. Glad I am not alone. You know how sometimes we think we are the "only one".

Skymom2008 profile image
Skymom2008

I have the same problem and am glad it is not just me! I feel sometimes it is "just me".

Manli profile image
Manli

Please prevent him from falling and take care of yourself! My husband is in the same situation as your dad . A month ago I try to get him up when he fell down ,but was pressed down to the floor by his fatigue, and got a hip fracture. Please aware!

swva profile image
swva

The coughing may be due to a swallowing problem. His Dr. may want to send him to a therapist or to have a swallowing study performed.

Coblrman profile image
Coblrman

if my meds are working I can walk a mile+. If its not working that's a different issue however I am not out of breath

p-p- profile image
p-p-

Please go to a reputable hospital and get some help.Most hospitals do not know any thing about PD. My suggestion go to Georgetown University Research Hospital, They have an excellent Neurological Dept. Those doctors including me save lives. Hope your husband along with your kindness are able to get him to DC. even if he has to go by ambulance. You are savvy and know what the best thing to do. God Bless ! Pam

Michaelchorney profile image
Michaelchorney

You mention that your husband is "probably at the beginning of stage 3". This is the first time that I've heard of stages in Parkinsons. Do you have a reference or link to information on PD stages?

wrebecca profile image
wrebecca

Check out :Pulmonary Restrictive Disease. It is associated with Parkinson. I was unable to walk across the room with out gasping for air. My Lung doctor put me on a bipap machine and breathing exercises. The lung is a muscle and PD can cause it to freeze up just like the other muscles. Another issue may be the lack of activity. This can cause the body to get lazy. Start with baby steps but build up daily adding a little more time to your daily walking.

Just some thoughts. Wishing you well.

Littlerody profile image
Littlerody

Has he been checked for gerd or gastroparesis? Gerd can cause coughing and pd can cause gp which can cause gerd. They are all the nonmotor symptoms of pd. Most of which I have. He may be tired due to low blood pressure? Stay well Judy.

cabbagecottage profile image
cabbagecottage

Might be a good idea to try using a thickener in your drinks just a little bn will help . This migh help the cough

Opt8 profile image
Opt8

I Just started carbo/levo this year and seems to help with some fatigue and while it helps s with some fatigue and walking not like I was before I got pd. My legs feel like they have weights in them. Wonder if music helps. I never liked coffee, but am now drink a cup in morning for energy.

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