Does anyone have any views on these two questions. Thanks in advance for your answers.
When it's nighttime/darkness it feels as though everything is further away and dimmer than it used to be- as if I'm looking down the wrong end of a telescope. I also feel this a bit during the daytime. I can feel the difference between pre/post Parkinsons diagnosis. Is this something I just have to get used to or can it be improved in any way?
When I think negative thoughts, especially when I'm in bed/half awake trying to summon up motivation to get going, I feel this very powerful sinking feeling in my stomach, and limbs that is incredibly depressing- it's as if a 'deadness' spreads over my body- like nothing I ever experienced before PD. It saps me of every positive impulse I can think or feel and feels 'un-come-back-from-able' in my ability to shake it off. Is this something that others have experienced and is it part and parcel of PD or might it be meds?
I'm on Simemet 25/100 four times a day and diagnosed 9 months ago aged 38.
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Tomtom11
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It sounds like depression to me which is common with PD. It could be the PD itself, the meds, or the reaction to the diagnosis. I would call your neurologist and discuss your feelings. Hope those feelings go away soon.
The first question I have no experience with. The second question I have a lot of experience with. And you described it precisely the way I feel it too. A horrible sadness and Sinking Feeling. The only thing that makes it better is getting up and then it seems to fade. I Take 5 sinimet a day I was diagnosed in 2010.
A widely available serotonin precursor/booster, 5-htp (200mg 2x p/day am/pm on empty stomach) worked for me when I was feeling similarly. A 1x p/day in a.m. dose may suffice... and the feelings of dread may simply pass once you finally come to realize your recent diagnosis is not really as dire as it currently seems. [*Serotonin is a mood-modulating neurotransmitter]
Will 5htp interfere with Sinemet or other PD meds like Meripax? So far my hubby , at 75, is on low amts of these and will start a therapy exercise group in a month or so. He went to it 2 years ago, actually before PD symptoms increased with walking, getting up from chair problems, so I'm hoping it will help again but it does cost $50.00 a month, I think....hope it's not per week which is only 2 days. We are on a retirement income and it's not much....$7000.00 a yr. goes to Medicare and our retirement Ins. from his job which has now changed companies. I am not impressed with his Nuerologist but at least he's close. The better ones are an hour away at a university which is where he started upon diagnosis. He won't go to his MD and I wish he would for breathing problems. He does go to Dermatologist for skin cancers which I do too. Also eye Dr.....had cataracts removed....now has double vision in one eye which Dr. gives no solution to. He says he'll try another our daughter found. We've heard of prism glasses. I think depression and fatigue keeps him from going. We went to a movie, Thor, with daughter and 2 boys yesterday. It was fun but too crowded so we were back row and he fell asleep or just closed his eyes, despite it being loud. My fatigue has hit me today with Fibro.and lifelong depression so 5htp is not an option since I take Cymbalta, pain med., provigil, etc etc. .
Another question....is coughing a problem with PD? Hubby coughs constantly and I can hear wheezing in his lungs, especially in his sleep. He doesn't have a cold or flu.
Maybe that was too much to write. Sorry. M.A. from USA
PDers frequently get pneumonia due to aspiration of food and water into the lungs and it is a frequent cause of death. He should be checked for reflux and if he has it, Enzymatic Therapy’ Heartburn Relief is a spectacular thing to take for it and very safe without the serious side effects of the drugs usually given for this. A cough is a symptom of reflux. You can just try it without the test too....if it helps, you know you have it.
He can take Big Voice classes for free at the local hospital rehab. He can use blowing devices to strengthen his exhale. Wheezing is often from the bronchial area. We frequently used sea buckthorn oil in a nebuluzer for that....fabulous. Your doctor will have no idea what that is.
You will want to know eventually if the cough comes from that or something else if it continues.
Read my post on l-theanine for depression. Actually, read all my posts.
Actually, why is it that you are asking for help from an online source if he has a doctor...that is who should be saying all this stuff to him, and you. Ask him about reflux, swallow testing, pulmonary testing, rehab...it’s all covered under Medicare.
Grandma... 5-HTP (5-Hydroxytryptophan) is a naturally occurring amino acid. As a nutritional supplement it is produced commercially from the seeds of the African plant Griffonia simplicifolia. By bolstering production of the chemical serotonin, it is known to aide in treatment of insomnia, depression, anxiety, migraine, tension-type headaches, etc. I have never heard of any negative interactions with any of the conventional PD drugs and have never experienced any personally (although discussion with your MD wouldn't hurt). It should NOT, however, be taken in combination with prescribed antidepressants.
And, yes, coughing and swallowing issues are typical of PD. The MJFF site states,
"Difficulty swallowing, called dysphagia, can happen at any stage of Parkinson disease. Signs and symptoms can range from mild to severe and may include: difficulty swallowing certain foods or liquids, coughing or throat clearing during or after eating/drinking, and feeling as if food is getting stuck. As the disease progresses, swallowing can become severely compromised and food/liquid can get into the lungs, causing aspiration pneumonia. Aspiration pneumonia is the leading cause of death in PD.
"It is important to note any changes to swallowing, because there is opportunity to intervene early and preserve both health and quality of life. Swallowing disorders are managed by the medical team with a speech-language pathologist and physician." Full Story: michaeljfox.org/foundation/...
Since (as stated) intervention can improve the situation, it may be wise to locate an LSVT (Lee Silverman Voice Treatment) center or other speech pathologist/specialist in your area to address the matter asap: lsvtglobal.com/clinicians
Tomtom11, I wanted to add to my reply, PD is definitely not the best diagnosis to get, especially young onset PwP's (I was 46 when diagnosed 14 yrs ago), but if you accept it, learn how to deal with it and learn as much as you can, you will start feeling better. In my experience, I feel I have an advantage in getting it at an earlier age because it gave me the opportunity to take action thru exercise, supplements, nutrition, etc. Overall, I actually feel better than I did when I was first diagnosed. I have a few more symptoms, but I feel better, if that makes any sense! If you sit and do nothing, you'll go downhill a lot faster. Make sure you communicate your feelings with your neurologist. Take care & keep fighting!
Tomtom11, I have struggled with depression all my life.
A year ago I was diagnosed with PD and was steered toward a Rock Steady Boxing class. RSB is formulated specifically for PD patients, and provides high intensity exercises that address areas of struggle for those of us with PD.
It has been a life changer! My PD has improved, my thirty years of backaches are over, and my depression has lost its grip on my life! I am feeling strong and feeling great!
The people in my class range from a 51 year old diagnosed at age 32, to an 85 year old recently diagnosed.
The coaches are well trained and well educated on PD, and are creative, compassionate, and positive.
We all work hard together, but also laugh, encourage, and sometimes pray for each other.
The workouts are so playful and creative that even I, a lifelong sedentary person, forget that the activities are “good for me” and feel energized and joyful and connected with others.
Since all of us “fighters” have PD, we know that our experiences make sense to one another, which gives us a sense of community. It is the best version of a support group that I can imagine, because we don’t just share stories, we share a determination to actively fight back against PD!
First....the idea that just reconciling oneself to the diagnosis will make you feel better is naive as to the physical reasons for your symptoms. First, you must attend to your general condition as if ‘pre-PD’; that is, what shape is your body in. Get your thyroid tested, check for sleep apnea, get a test (Spectrocell) which will indicate what nutrients are in your cells and an adrenal function (spit) test. I have addressed these in previous replies. You need a good naturopathic MD who will address all your general health issues to avoid the ‘well, what did you expect....you have PD’ approach.
If you are unable to access all this, at the very least use a really good multi vitamin/mineral. Purecaps Ultra is what we have both used for years and is excellent.
If you take statins, read my other replies on this problem.
In short, you have PD but you need to keep all your systems built up to have sufficient energy to contend with that condition....that requires a lot of ongoing attention. There is what is referred to as the ‘anchor effect’- when one system goes down, it pulls all the others...you don’t want that to happen.
My husband had those exact symptoms soon after diagnosis. He referred to it as ‘losing his life essence’. He stopped statins, took large amounts of CoQ10 and improved...it didn’t ‘cure’ the PD but he felt hugely better for the next 15 years. Unfortunately, during 13 of those years he did not manage to get the black dog of depression/anxiety under control...psych meds were difficult. Then we found l-theanine and starting with 100mg tittering up to 400mg every 4hrs except bedtime. I gave written repeated about this wonderful alternative to drugs...an amino acid (building blocks) extract from green tea which changed his life in the area of depression, leaving the last two years of his life in equanimity. The past years of constant spurts of adrenaline that accompanied his depression and anxiety did their damage, however, and as predicted by a knowledgeable cardiologist years before, eventually hardened his arteries and the tissue of his heart wall to the point where they could no longer expand and contract. Last thanksgiving, he died peacefully in his sleep...not from PD or pneumonia so common to PD but from the eventual effect of adrenaline.
If only we had gotten it under control earlier, I think he would still be here.
I must say that we were a lot more brazen than most in our experimentation with supplements and I do not regret it....any doctor looking realistically at my husband who had stage 4 PD for YEARS and still functioned well, knew his condition was due to those efforts. If you are not so inclined and need the ok of your doc and if your neurologist is unwilling to go beyond the confines of his speciality and help you experiment, either get another neurologist. If you can afford it, get a naturopath to help you.
I don’t mean to sound anti-doctor because having three in our immediate family, I am not. I have, however, heard a lot of really stupid responses from some....one fellow, head of the movement dept of a major hospital, told me, “I don’t know anything about that stuff and I don’t want to know. Just don’t bring it in the door.”
After my comment that my husband was showing symptoms of a low thyroid, another barked, “well, of course, he has PD...what do you expect; what do you want me to do about it.” Well, I wanted him to test him and put him on the appropriate dose of thyroid....I wanted to avoid the anchor effect. Later, another doc looked past PD at his Whole condition and helped tremendously.
This is a harsh but common reaction. Unless a doctor is particularly interested in shoring up the body for the fight, he will stay within the parameters of his speciality and understandably so. There is enough material for him to deal with there and making suggestions about supplements which have not been double blind tested might open him up to lawsuit.
There is plenty to learn online....you can read testing on NIH, read articles on LEF.org., ConsumerLab.org(subscription) And all sorts of places. Avoid cure-all offers from retail sellers. LEF and Purecaps both have info on the tests results.
If you don’t have the energy to do all this, hopefully you have a loved one to help you. If not and until you feel better, at least get on the stuff I mention above.
I have a lot of posts on this site...all long😄. I now spend a lot of time repeating myself now. I think there is away to find past posts but don’t know how....I would love to add that to each epistle I write.
The only way I know how to do it is click on your name that is on a reply and it will take you to your profile and it will show your posts, your replies, your followers, and who you are following. You could go to your posts and highlight the info and do a "ctrl C" to copy and then do a "Ctrl V" to paste it where you need it.
Try to remember that the feeling will pass, try deep breathing, qigong practice, find a class and stick with it, exercise as much as possible, preferably doing activities that you enjoy, connect with others, both other pwp and friends and family, rest when you’re tired, eat fresh, unprocessed food, relax and remember that PD is an opportunity to take stock and seek balance, and simplify your life. Be in charge of your own healing journey, have a great doctor who is a movement disorder specialist but remember that he/she can only treat symptoms, which will help give you the energy to do the real work which IMHO has an emotional and spiritual focus.
Im sorry. This is a bewildering disease at the best of times. Otherwise - are you tolerating the meds and have they relieved your major symptoms? Are you able to exercise? This sounds like depression as I've had similiar experiences. I'm 47 diagnosed little over a year. Exercise helps me. There are days (many) I feel the same heaviness. Talk to your MD, keep sharing on here and get on a treadmill or walking briskly and doing some weight bearing exercise if you can. Sweat is good for my moods I just have to force getting there somedays. Good luck!
Exercise helps everything. It particularly helps PD because, among other things, it helps regulate glucose. It is not a panacea, however, as there are many PDers who exercise regularly and continue to have symptoms to the same degree. As the ability to exercise becomes more impaired, the results of regulating glucose and stimulating endorphins lessens....good to get involved in some sort of ‘forced exercise’ as well.
The truth, This is the time of your life. It just doen't get any better than this
The previous suggestions about ways of temporarily reducing the symptoms of PD. with exercise and proper medication are of course correct. DONZIM has the best post so read that one again.
Parkinson's is one of a very long list of chronic disease. Chronic just means there is no cure, treatment is temporary and is limited to treating symptoms and the decease gets progressively worse. The strange thing about human behaviour is we build walls to to keep this reality out of our thoughts. An example is young people do not go to Support Group meetings because they do not want to see what the future may hold and thus deny themselves access to information. It is an inability to consistently face reality and a form of denial. I think it is connected to things like forgetting to take medication, failures to exercise and not forcing our selves to fight the disease and some people on this web site will recoil at these words and my point is then proven.
I suggest that you talk to a professional or an intelligent friend, or maybe just a well meaning friend or close relative and discuss this with them and your feeling of dread. You may not wish to think about the topic but it may be that your unconscious brain is having the conversation with out you. We have tried to have such conversations here but raised the alarm in the Everything is Wonderful and the Self Pity society and we have been told that that kind of talk is not supportive. I am regardless trying to help you.
Enjoy your self , it is later than you think. As you age, the disease will for some people increase in severity at a faster and faster rate. Know it , accept it , prepare, and get the most out of what you have, now. Stop worrying, it is what it is. Get on with it.
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In no man's land
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Pity Party
26 years with PD
