VERY CONFUSED

Since my husband has lowered his dosage of carbidopa/lepodopa the only difference we have found is that he having more difficulty getting in and out of bed. He seems more alert so I decided to email the Dtr who told me to lower the dosage to see if his extreme tiredness is from the med. Also questioned him about what I have reading about the benefit of coq10. His answer was wean him off the med if I want to see if that is making him so tired. Of course he also added that his motor function would probably be not as good as it i now. He walks with his walker, has not fallen, thank goodness. It sounds like a trade off to me. Be tired or not be able to walk. That's a hell of a choice. Also said they have not found any benefit from coq10. His Dtr is the head of the movement and Disorder center, supposedly very up on everything. Right now I am furious.

19 Replies

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  • what is his age

    is he tired or fatigued there is a difference

    when i feel tire or fatigued i do some type of exercise and it helps

    this may seem weird but if it is the meds this will help

  • can you tell what type of exercise?

  • what is his age and condition

    any thing to get his mind busy

  • bailey1919, He is 78 and has heart conditions as well. I try so hard to get him to move around but he is so stubborn.

  • do your best but remember you need to enjoy life too

    take care of yourself and you can help him more

  • I try bailey1919 but it so difficult. He has a Dtrs apt tomorrow and his level, I forgot what you call it, that he takes warfarin for is very high. Received a call not to give to him today, which fortunately I had not. Give it to him with his evening meds. They will be doing another blood draw tomorrow before his apt won't be until late in the afternoon.. Told me that if he starts to bleed from anywhere to take him to the emergency room ASAP.

  • it sounds to me that you need to speak with his dr about getting him into some program suited for his age and abilities

    good luck

  • Do any kind of stretches...do the gentle "hatha" yoga. Get in a warm water pool...it helps to stretch in warm water. I feel much, much better also due to NeuPro patches...dunno what's in them but they've helped me with exhaustion....

  • Carbidopa/levidopa has given me a life again...no more extreme fatigue, aches in the back, and walk straighter and smoother. PD can effect you memory, ability yo multi task is gone and slow you thought/speech process...maybe he is experiencing that.

  • is he what I call switching off , If I ask John if he is tired he say not really I am slow .

    I tell him I'll recharge his battery lol

    he is worse about an hour after taking his Sinemet and can be switched off for an few hours or even longer . some days all day only coming round for commode , or I can fit giBing him his meal . I can never plan when he will be responsive enough .

  • Sometimes it is good to have a holiday from a medication to see if it is still doing what it should and maybe there is another better one.. also CQ10 has to be taken in quite high doses according to the articles that say it is helpful and that could be expensive. I have been researching since 31.12.2000 when husband diagnosed and learned more year after year that has helped us and sometimes we have provided the info to the Health Professionals.... I was told by one.. we cant read everything on every condition so by all means raise anything you think might be important.

  • Hi Auddonz. I have written this reply now for the 3rd time and each time it bombs out when I try to click on 'Reply'. I hope it goes through this time!

    You have to realize that the is no medication that slows down or even stops Pd. They only try to temporarily hide one or two of the symptoms, not always successfully.

    The only action he can take is to do the only thing that has been proven to slow down or even REVERSE THE PROGRESSION OF PD. My Pd. is better now than it was in 1963, when my 1st symptom started.

    You may well be asking, "How the hell do you expect my husband to do fast walking when he has to use a walker?". That is a good question but is not easy to convince you of the answer, which is: "Very slowly!"

    If you were to hold your husband's arm and walk with him so that he does not fall. Then tell him to stand up straight and consciously put his right leg forward and land on the heel of his right foot, with his toes pointing in the air. HE MUST THINK OF THE HEEL HITTING THE GROUND WITH THE TOES STICKING UP. yOU WILL FIND THAT HE IS ABLE TO WALK THIS WAY. He might get tired quite quickly, but that does not matter. Do this every day or even twice a day until he walks for longer without feeling so tired. Build it up slowly until he is able to walk without you holding him. Every day he will be getting fitter and fitter. When he ca walk for 10 minutes, unaided then tell him to see how far he can get in that 10 minutes. Keep a record of the distance and only do that FAST WALKING every 2nd day. After 2 weeks he should be able to walk for 15 minutes. Record every distance he walks so that he will get the psychological benefit of seeing his condition improving. Every 2 weeks he can walk for 5 minutes longer. In 4 or 5 months time he will be walking for an hour. IMAGINE THAT!

    You may notice that I have not talked about money? IT DOES NOT COST ANY MONEY TO DO FAST WALKING, ONLY DETERMINATION! Lots of determination.

    Go for it!

    John

  • how long should a person who has fairly good gait on some days walk? every other day? i was doing every day and was going to cut down to 3x/week cause my legs were getting tired or weak, thanks, john

  • Ironically, John, that is exactly how his pt told him to walk today but with his walker. She also tells him to walk straight and look straight ahead. Like this pt a lot. Appreciate your input tremendously.

    Thanks,

    Audrey

  • Dear Furious, Being tired is one of the many Symptoms of PD. If you would like to see a complete SYMPTOMS LIST of PD, e-mail me at: macbunch@Hotmail.com I will send you two different versions of the Symptoms List (100+ items). Simply put 'Symptoms' in the subject portion at the top. This list comes in Excel format and has many features to help the battle of PD.

    Note: This offer is open to anyone wanting to receive the list.

    Charsie

  • I do not know if you are in UK or US but my husband is in late stages of PD and I have finally realized that this disease R is a crap shoot, Right now he is in rehab after yet again another three day Medicare approved hospital stay and is worse than when he went it, I have come to hate the so called providers of PD care and anything connected with them,He will be home with me along with home health care .He has palliative care now and that will go into hospice at some point, The Drs told me at hospital it will go downhill much faster now and it has.IHATE THIS!

  • We all hate this bartogirl

  • How do you fight the unknown ? Drs can only mask the obvious and it's your responsibility to experiment to find comfort and peace they're oblivious to the everyday struggles you experience.

  • Very true Pappy214

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