Helping Those Who Care for Parkinson's Patients
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hi! i'm back! Lost my password but i still come to this forum to read all your posts.This is stil the best PD forum ever. My mum's body is getting stiffer and stiffer without enough dosage of madopa. (dosage reduce becos of hallucinations and low blood pressure) She can't sleep every nite after the medicine worn off. Stiffness of body has caused her body to feel pain all throughout and most importantly, she can't breathe (can't swallow, a lot of phlegm) so , she has to sit up whole nite to breath properly. She used to prefer sleeping on higher pillow but now, she can't take thick pillows. Does anyone have such problems of breathing, how do you resolve it? and entire body aching and not able to move, does massage help at all? |
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I think that I would call the physician and tell him/her what is going on with your mum. It sounds to me that the swallowing and difficult breathing are part of the advanced PD. The muscles of the esophagus and rib cage are no doubt involved at this point. My husband always found Extra Strength Tylenol helped with the achy feelings. You can try medications to make the secretion less thick (viscious) and oxygen may make her more comfortable. Glad you are back with us! |
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my mum has PD for 8 years now and just like everyone mentioned in this forum, we never noe which stage they are facing now or how worst is it now. My mum hasn't experienced shivering of hands or sundown syndrome. She can still drink water and take solid food. But she has flushes almost everyday, difficulty of breathing, low blood pressure occasionally, unable to move around and hunching of back. She told me she would rather have higher dosage of madopa even if it causes hallucinations than facing body stiffness every day which lead to unbearable pain. It can be quite frustrating cos no matter how i tried, she is still uncomfortable. To all caregivers out there, pls give ample time for yourself to rest. Its tough being a caregiver, you can't go for vacations, you have to balance work, study and caregiving, you dun have an outlet to show your emotions cos its expected of you to be patient and caring. But we are human too, so try your best, the rest let's leave it to God's hands. |
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| My mom also has trouble breathing but she has COPD in addition to PD. She's been using oxygen since last October when she had a lung infection. Even with the oxygen she still gets winded easily & has trouble breathing at night. I've noticed that her breathing difficulties have been getting worse very rapidly. |
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| Parkinson's Disease in time causes a number of problems with our autonomic nervous system. Which controls our involuntary activities such as breathing, blood pressure, heart rate, vision, eye blink, eye opening or shutting. The things our bodies used to just do. Yoga, vitamins and exercise while they may help don't cure the problem as it lies with the underling progression of Parkinson's. Take care, best of luck and hang in there. |
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yongmei, massage helps to get rid of the aches and stiffness. If possible try meridian-based massage and acupressure. Someone mentioned that massage is expensive. Depending upon where you are, it might be worth learning some massage like TuiNa (Chinese therapeutic massage) and an energy healing technique such as Reiki or Quantum Touch. Both these (massage and energy techniques) help to improve the quality of life quite a bit for both caregiver and receiver. There are some groups of reiki practitioners who do group practice for free. You can look for such groups in your area. Other than this you can get referrals from massage schools wherein the students work for less than the normal fee that a practitioner charges, or sometimes even do it free as a part of their assignments. I partly agree with Lohengr1n. But yogic breathing exercises help to address the autonomic nervous system. And breathing exercises are easy to learn compared to the difficult yogic postures. Even patients who are not ambulatory are able to do simple forms of breathing exercises, even while lying down. Calming the nervous system helps to get better quality sleep as well (unless it is disturbed by other factors such as bathroom trips or breathing problems and so on). I successfully helped my friend's father with the stiffness and temporarily even with the trembling. His calves were as stiff as wood. It took about 5 sessions for his calves to soften up. When I did some acupressure and energy work on him, he stopped trembling on the first day and my friend's mother had tears in her eyes. She told me that she had not seen him rest like this in 10 years during which time he was constantly shaking/trembling even in his sleep. This is by no means a cure, but it does improve the quality of life. It is worth learning an energy-based technique to complement the meds and physiotherapy. |
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thank you for all your sharing of info! Mum having appt with parkinson doc this wed. i would ask doc how her breathing problem can be resolved. i agree massage helps muscle stiffness. whenever my mum felt stiffness, i just help her do simple massage, she will feel better. i just hope her blood pressure will be normal so that she can continue take medicine. Can parkinson patients go for vacation at all? |