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Everything posted by lahdedah

  1. lahdedah

    CBD Oil

    I have pain with Parkinson's. I have found a 1-1 ratio very helpful. If I can get the pain under control then some of my symptoms such as tremors get some relief. Also it is helpful getting to sleep or when meds need to be adjusted. Currently I am reducing the amount of Rytary and adjusting the intervals I was taking Rytary because I was gradually having symptoms that seemed to indicate I was getting too much levodopa - such as feeling drunk or high (even when not using marijuana or alcohol), dizzy, balance was a problem, shortness of breath, and an almost constant rigidity or contraction of musles in my toes and feet, stomach and legs. When I reduce the Rytary, those symptoms almost completely disappear. Unfortunately the tremors increase as well as an arthritic like pain in my hands and arms. I'm trying to find a happy medium with the Rytary. Marijuana is very helpful in relieving the pain and some of the tremors while I try to find the "magic" balance with my meds. My biggest concern is I'm to take an overseas vacation soon and I am afraid to take the marijuana with me. Hope I can get my meds adjusted before I go and won't need the marijuana. I find it ironic that the drunk and sleepy symptoms I get with too much Rytary is apparently OK with our society but a little marijuana used in a very small dose to reduce the amount of Rytary is frowned upon.
  2. lahdedah

    MDS - yes or no

    I was diagnosed in 2013. At that time my family physician recommended I see a neurologist who came to my home town on a weekly basis. He is not a MDS but nevertheless was highly recommended. It was a 25 mile one way trip. I am currently experiencing some problems with medication. When I called the doctor's office they told be he no longer travels and I would have to see him at his office about 60 miles from my home. I like the doctor OK but am not particularly enthralled. About 85 miles from home is a PD Center of Excellence that has about 4 MDS on staff. What has been the experience of folks on this forum? Is it really worth it to see a MDS or should I just save myself the time and effort and make an appointment with the neurologist who is nearest even though he is not a MDS? Would appreciated some input. Thanks!
  3. lahdedah

    MDS - yes or no

    Thanks for the input. I think I knew the answer but just needed some validation and confirmation. Thanks!
  4. lahdedah

    Nightly bladder problems

    Benadryl (diphenhydramine) helps me. You can purchase it over the counter and it is easy to get. Tylenol PM also contains diphenhydramine. Sadly there some issues with it but then there seems to be an issue with almost anything one can take for Parkinson's.
  5. lahdedah

    Evening restlessness

    Ok, this is not a fix but it does help me cope. In the evenings I like to sit in an old fashioned rocker (not a glider or rocking recliner) and rock while watching TV or doing something to occupy my hands, such as reading, solitaire on a tablet, sewing, etc. It requires just the right amount of action to help me relax without too much stimulating activity. "Gonna rock around the clock tonight."
  6. lahdedah

    heavy legs

    I think I know what you mean by heavy legs. Feels like walking in waist high water while everyone else is walking outside the pool. My arms sometimes feel similar. I also get tired and have to take a rest although I may not have walked very far. I've no remedies. It's something I plan on visiting with a Doc about. PS I did manage to stop my neuro long enough to begin a very short conversation. I'm currently taking Rytary. I wondered if taking an immediate acting C/L a few minutes before I expected to take a walk or engage in more strenuous activity might be helpful. He said I could give it a try. So far I haven't tried it. Perhaps I'll give it a go this weekend and see what happens. I'll let you know.
  7. lahdedah

    alcohol and tremors

    My experience is that anything that relaxes me helps to relieve my tremors - MM, alcohol, resting, music, etc. Even fun excitement such as watching a really close ballgame will set the tremors off.
  8. lahdedah

    inhaled levadopa

    Music Man - I wasn't aware of a problem and have not noticed anything. My Parky doc is aware that I'm taking it but he has never said anything about it. I'm taking Rytary. I don't know if that makes any difference or not. I take my meds at 6am, 2pm, and 10pm. I take Zantac at 6am and 10pm but no Zantac at 2pm.
  9. lahdedah

    inhaled levadopa

    Gee, I have just the opposite problem. I have to eat something almost all the time or I feel nauseous and consequentially my weight just keeps going up. Doc says I'll adjust to the meds in time but it's been 3 years now. I can keep it under control as long as I use Zantac twice a day. Even then I find myself snacking so that my stomach feels better. Maybe I should buy stock in Zantac. I am fairly active but know I should exercise more. I have some physical problems with strenuous exercise I won't go into now. I'm not sure what is Parkinson's related and what is just old age or other physical ailments. the Parky doc says talk to family doc and family doc points me back to the Parky doc. Oh the joys of Parkinson's!!
  10. lahdedah

    Tell Congress: Vote No on New Health Care Reform Proposal

    I don't understand how we can possibly reduce the cost of health insurance to anyone except the heavily subsidized using the present system. This seems to me to be either an outright lie or delusional thinking. The supreme court has said the way we are presently paying health insurance is through a "tax" on the premiums of the healthy and those able to afford it. Everyone that is deemed able to afford it pay the same amount, with a nod given to the bronze, silver, and gold levels, regardless of income. In addition there was, but not sure if there still is, a tax on medical equipment. When has a tax on anything resulted in that "thing" being cheaper or more affordable? We have sales tax but does that make those items cheaper? How about we tax food for everyone but those on food stamps? Those folks not only will not have to pay the sales tax but we'll reduce the cost of the food items by 50%. The cost will all be paid for by those without food stamps. The fact is sales tax, particularly on food is a very regressive tax as a larger percent of the disposable income of the poor is taken in tax versus the percent of income of the richer. Does anyone believe that by handing out more food stamps and more subsidizes for those with lower incomes and paying for it entirely by a sales tax on the rest of us will make the overall cost of food cheaper? Does anyone seriously believe that will result in cheaper and more available food? I'd like to put forward the idea that taxing health insurance or medical equipment is much the same. In my opinion any bill or system to reduce the cost of health insurance, make it more affordable and is paid for by a tax on health insurance and medical equipment is doomed to failure. Frankly I think an income tax for all, based upon ability to pay, would be a much better approach. Just my 2 cents. I have other opinions about health insurance but will stop here. Perhaps you can show me the errors of my thinking.
  11. lahdedah

    Sinemet making me feel sick?

    When I was first diagnosed I started on Sinemet, one pill 3times daily. Along with nausea I would also get mildly dizzy and my cheeks would sort get numb or tingle shortly after taking a pill. That is exactly how I feel when I'm bordering on drinking too much alcohol. I never got to the point where I was taking enough Sinemet to adequately control my symptoms. I am now on Rytary and have had better results (yes, I know Rytary is basically Sinemet with some changes in the delivery system). Still upon occasion, if I have not eaten anything before and immediately after taking Rytary, I will get that dizzy and cheek tingling sensation. It seems to happen more often in the morning than at 2:00 and 10:00. I think I am sensitive to the levodopa and abrupt changes affect me in the manner I've just described. I believe my sensitivity is due more to the sudden ups and downs not necessarily the amount of levodopa I am taking. The Rytary seems like it is smoother and has fewer highs and lows. It is only when my stomach is completely empty and nothing is slowing the absorption of levodopa that I get this reaction. On the mornings I take my pills first thing and then immediately eat breakfast, I get along OK.
  12. lahdedah

    Struggling a bit...

    Welcome! Here are a couple of things that help me come to grips with Parkinson's. You may not find them comforting or helpful so please disregard if that is so. The day after I received my diagnosis I reminded myself that I don't have anything that I didn't have the day before and the day before that, I just didn't know what it was. If I could handle yesterday then it is most likely I can handle today and tomorrow. Don't cross that bridge before you come to it. It is so easy to dwell on all the possible and often frightening things about this disease. But, remember no one knows what tomorrow will bring. Yes, I might develop a new symptom but I might also get in a car accident, get killed and consequently never develop any other symptoms. There might also be new treatments. Life is a crap shoot. We just don't know what will happen. We might want to plan for some of the possible negative things, but there is no point in dwelling on something that may not even happen. Sometimes those around us are very concerned and mourn some of the losses they see in our health and wellbeing. It is also tempting to feel sorry for ourselves and start thinking that no one else has problems. No one gets through this life alive! We all must face mortality. Hubby, don't worry so much about me as I might not be the first one to go. Let's make the most of today - no premature mourning, there is enough time to mourn tomorrow. Start making a bucket list and fill it with both the bold and daring as well as the simple. Go on that once in a lifetime trip but there is also a lot of satisfaction in some of the more simple things, such as attending a grandson's ballgame or attending a granddaughter's graduation. It is good to reflect upon the number of things that have been checked off the list and contemplate new things to add. In other words don't forget to keep living. It is hard if not impossible to always feel positive - so don't try. It's ok to take a break and vent, scream, cuss, have a good old tantrum and cry. Just be sure not to hurt the innocent while indulging yourself. Remember you are dealing with the loss of dopamine which not only affects our movement but emotions as well. Feeling down is not a sign of weakness but a symptom of the disease itself. See your doctor often and don't be afraid to be your own advocate or ask a loved one to assist in this regard. Life goes on. All we can really do is make the best with what we've got.
  13. lahdedah

    Pay attention.

    I realize my comments will take us slightly off subject but feel compelled to make them. Recently a close relative of mine ( I'll call him Mr. X ) voluntarily went into a drug and alcohol rehab facility. At the time those folks at the facility told us in their professional opinion the best results were achieved with a 30 day committal. Mr. X has a gold rated insurance plan purchased through the Obamacare program. Supposedly these medical services were covered and we were feeling more than a little relieved and bless to have such good insurance. What we now know is the coverage is not worth the paper it is written on. And, if anecdotal experiences told by other patients is true, this is a common experience. A few days after checking himself in, the facility put in a claim. The insurance company informed us they would cover four days and then the patient would be best treated by extensive outpatient therapy. This was not what those at the facility who knew and were treating Mr. X were recommending. The claim was sent to a third party for approval and was suppose to take into account best practices and common treatments. When you take into account the cost/share and deductible, the insurance company will only pay for a little more than one day and any days beyond the 4 days are totally up to the patient to pay. Here are some problems with this. To begin with, the deductible was such that BCBS (Blue Cross Blue Shield) has agreed to pay a little over one day while Mr. X will be responsible for most of the remainder. Most alcoholics are barely out of detox after 4 days, let alone have made many strides in long term rehabilitation. The third party that BCBS consulted with is owned in partnership with by BCBS and other insurance companies. There is absolutely no incentive for this third party to be fair or above board in their recommendations as they are essentially getting paid to deny claims. If they don't then I assume the insurance companies will look to sell their portion of the company or go looking for another company to do their dirty work for them. The third party claims the results of extensive community based therapy is as effective and naturally more cost effective despite whatever the professionals at the rehab center might say. The thing of it is, most of the patients look at the price tag and feel they can't afford to pay the entire cost of the 2 or 3 weeks remaining in their recommended stay and leave the facilities. In effect, it is a self fulfilling prophesy, most patients don't stay a month and go into outpatient treatment but not because it is more effective but because they can't afford to do otherwise. Sadly the third party would have you believe otherwise. While Mr. X was there, there were many patients who had several commitments so obviously outpatient rehab hasn't been all the successful but I don't think getting the patient well is really the point - getting more money for insurance companies is. Yes, the denied claims can be appealed but there is no guarantee it will go through. In addition one must realize that most folks who have reached the point of going to a rehab facility are struggling and very likely have hit rock bottom. Money, jobs, and financial security are an iffy proposition - making the prospect of fighting a big insurance company or trying to find the funds to pay for treatment on their own more than a little daunting, if not down right impossible. My point is I personally am not going to let rhetoric about how awful it is going to be if the big bad republicans take away coverage for mental health or drug rehab because I know the truth of the situation. Yes, currently you are told you have coverage for these things, but the truth is you DON'T. It is just empty words and not worth the paper or website it is written on. They can't take away what you really never had.
  14. You might try a photo album with the names of persons and date taken (or age) in large lettering beneath the pictures. Include lots of old photos that may rekindle some old memories and some recent photos that might help him recognize newer family members. My Mom ( memory loss but not PD) liked looking through them on her own and enjoyed it when family members looked at the photos with her. Music, especially music that was popular during their youth. The difficult part of this is getting a play back system that your dad can operate. Might have more luck listening with him and you playing or operating it or perhaps asking a nurse to help him with it. mara177's suggestion of sing-a-longs and live music is excellent. You might inquire at your church or other groups (4-H clubs, scouts) if there would be someone wanting to do some community service. Does a family member play guitar or piano? When your dad visits your home you might want to have a family sing-a-long. (My Mom loved this) Or, perhaps as a birthday present you might want to cough up the money and pay a local group or musician(s) to perform at the health care facility. My Mom loved to just take a ride in the car. It didn't need to be any place in particular, just a chance to get out and look at the scenery - maybe a stop for ice cream or something to drink. It is difficult watching a loved one slowly disengage from life. I could be wrong but I think is was harder for me to watch than it was for my Mom to experience first hand. Many times she was content to just sit back and watch. She sometimes seemed happiest just sitting on the front porch listening to family or friends talk or for someone to just hold her hand.
  15. lahdedah


    I am 66 years old and was diagnosed with PD in 2013. At that time I was started on carb/levo 25-100 - to be gradually increased to 2 tablets 3 times per day. I had stomach problems along with other side affects and stopped this and was prescribed Neupro patches. Both were only somewhat helpful. After reading some literature, I have come to believe what I was experiencing was akathisia. It bothers me worse that any of the other PD symptoms and I know it sounds silly but it is almost impossible to do or enjoy anything. Sitting still is practically impossible. During this time I started taking over the counter diphenhydramine 25 mg. At first it was just to sleep but gradually increased. Dr. then instructed me to stop the patches and prescribed Rytary 23.75 mg/95mg 3 tablets 3 times a day. About this time on my own I started taking more Benadryl ( diphenhydramine) until I was taking 3 tablets a day. I was also prescribed gabapentin 100 mg 3 times a day. I followed this regimen for about 6 months and felt "OK". I also was taking Ranitidine twice a day. About a month ago I was having more nausea, headaches, sleepiness, vivid dreams that wake both my partner and me, and a general drugged up feeling. I decided to discontinue the Benadryl to see if that helped. Well, headaches, sleepiness, vivid dreams, and the drugged up feeling got better but what I suspect to be akathisia came roaring back. I now believe the Benadryl is what was keeping the akathisia in check all along. I also discovered that I just can't take Rytary on an empty stomach or with a couple of crackers. I've got to have a meal with it or no amount of Ranitidine helps. Currently I'm taking 3 Rytary 3 times a day, a half tablet of Benadryl 3 times a day, gabapentin as prescribed and Ranitidine. The akathisia is somewhat in check but I'm only somewhat comfortable. I don't like the side affects of the Benadryl and I have also read some literature suggesting that Benadryl may not be something I should be taking long term, Although, neither my neurologist nor the specialist I saw about 3 months ago at the Kansas University seemed to be concerned about it. The specialist told me I was probably undermedicated. I asked him how I could take more when I was already experiencing nausea. He told me I could take more when I stopped feeling nauseous. Well that hasn't happened so far and I doubt it ever will. Anyway, one time I tried taking 4 tablets of Rytary (no Benadryl) and it didn't help the akathisia at all and other side affects suggest to me it was just too much. Do you have any suggestions? Should I go back to the full dose of Benadryl (3 tablets a day), stay with my current dosage, or quit it entirely? What do you recommend for akathisia? To date carb/levo, Neupro, and Rytary has not really made much of a difference when it comes to the akathisia. I do think the Rytary has been the best as I don't have the emotional ups and downs with it. Still I don't think it does much of anything for the akathisia and I'm pretty desperate to get it under control even if it means taking more Benadryl and letting dementia have its way with me. Is there any alternative to Benadryl that you might recommend? Thanks and sorry this is so long.
  16. lahdedah

    Any experience with Cannabis & PD

    I like cannatonic THC 7.6, CBD 16.8. I also like Mob Boss. I don't remember the exact concentrations off the top of my head but it is high in CBD and higher than the cannatonic in THC. I like just a little THC to elevate my mood but not get me high. I also like it high in CBD. I use just 2 or 3 puffs at a time. It helps relieve pain and rigidity - also sleep and tremors.
  17. lahdedah


    "Akathisia No discussion of physical discomfort in PD is complete without a mention of akathisia, or restlessness, a frequent and potentially disabling complaint. Some patients with parkinsonian akathisia are unable to sit still, lie in bed, drive a car, eat at a table or attend social gatherings. As a result of akathisia, patients may lose sleep or become socially isolated. In about half of the cases of parkinsonian akathisia, the symptom fluctuates with medications and may often be relieved by additional dopaminergic treatment." http://www.pdf.org/en/winter04_05_Pain_in_Parkinsons_Disease It's not dyskinesia. Movement is purposeful and voluntarily on my part. I move only because it is the only way to relieve pain/discomfort. Any kind of movement, even very limited movement, is helpful. I play a lot of computer games on the ipad while watching TV because just that little movement helps me sit still. The resting tremors in my hands is pretty much a constant but varies from barely perceptible to uncomfortable. The tremors get worse when I'm uncomfortable and since akathisia is definitely uncomfortable, they usually accompany the akathisia. I guess tremors are not voluntary movements but I am thinking tremors are separate different from dyskinesia. The only way I know to explain it is, it feels like restless leg syndrome gone wild. When experiencing akathisia at its worst, I feel like any touch or stimulation might cause me to fly apart. I have tried amantadine but couldn't see that it did anything for me. I get along pretty well as long as I take Benadryl or other over the counter medications containing diphenhydramine. My main concern is that I've read some literature that suggests there may be a link between dementia and diphenhydramine. In addition, it makes me very sleepy, gives me a headache and leaves me feeling drugged up. So I'm wondering if there is an alternative that might be better. I am taking Rytary and have found it helpful for controlling some of the other symptoms of PD but, on its own, without Benadryl, it doesn't do much for the akathisia.
  18. lahdedah

    Starting Sinemet -- how soon is it effective?

    I started the Sinemet very slowly - much like you. I could see absolutely no improvement and many undesirable side affects. In fact I got discouraged and stopped taking it. After trying the Neupro patch and other meds with no improvement, my doctor encouraged me to give the Sinemet another go. Starting off slowly again, I finally found some relief when I hit two tablets 25/100 three times a day. Still not much relief from my tremors but otherwise better than before. Zantac (nausea} was my constant friend and the restless leg thing was about 50%. Lots of mood swings, fatigue, crying spells over nothing, sort of a drunk feeling one moment and rock bottom the next. Stayed with the Sinemet (two tablet 25/100 three times a day) for several months and then began taking Rytary three capsules, three times a day. Much better, not perfect but no more ups and downs and some relief from the tremors. Also started Gabapentin for the restless legs and while no immediate improvement I think I can notice some improvement over the long term. I continue taking Benadryl (I was taking this even when on the Sinemet because it helps my tremors and helps me sleep) 25mg three times a day. It is my understanding that some studies have shown some relationship between Benadryl and dementia. I have mentioned this to my regular doctor, the neurologist, and the specialist at the Kansas Medical Center and none of them seemed concerned about it. Nor did they recommend I discontinue. I decided to do what I can today to feel better and worry about tomorrow, tomorrow. Besides who knows, I may get hit by a truck and never have to think about it again? Lastly, I use a little marijuana as I think it helps take the edge off of the tremors and eases some of the aches and pains. I'm not recommending this, just letting you know my experience. Hope this helps.
  19. lahdedah


    I had mood swings when taking Sinemet. I'm currently taking Rytary. Some folks have tried Rytary and didn't like it but, I've found the mood swings much better and my other symptoms are much more leveled out.
  20. lahdedah

    First Time Using Medical Marijuana

    I will find out this summer. Will let you know.
  21. lahdedah

    medical marijuana

    Stiffler, Have you tried any of the strains high in CBD? What did you think of them? I've been using Cannatonic (7.6 THC, 15.8 CBD) for quite some time and recently got new (new to me) one called Mob Boss (9 THC, 18 CBD). It's harder to go overboard with the Cannatonic, but I am slightly less sleepy with the Mob Boss and like the taste and smell for a change (when compared to the Cannatonic). Do you use on a fixed schedule or as needed? I'm just looking for some direction as for the most part it has been trial and error. I use an ipuff and as a general rule only take two tokes. I only take as needed - usually 1 or 2 times a day. I try not to take it at all if I know I'm going to be driving. I've tried the just the CBD tincture alone but have never tried it in combination with the ipuff. What is your daily routine?
  22. lahdedah

    medical marijuana

    I'm find it interesting that Montel claims pwp don't get the same euphoria from cannabis as folks without Parkinson's. I find that true when drinking an alcoholic beverage. My experience prior to P is different than it is now. I've often wondered if others with P have noticed the same? Despite growing up in the Woodstock era, I'm a new comer to cannabis. Consequently, I don't have a before and after to compare it to. If I consume too much of either, I will have many of the signs of over indulgence but feeling high or euphoric is not among them. Bearing that in mind, I have no desire to "get high" - I just want to reach that sweet spot where I notice some relief but still have good command over myself. I'm curious if this is more common than not among us pwp,
  23. lahdedah

    I need some advice/perspective on helping my dad

    Have you considered hiring some part time or even full time help? Does your Dad need nursing care or just someone to remind him of tasks he needs to do, fix lunch, drive him to appointments, laundry, light housekeeping, etc? Don't know if your finances allow for this but something you might consider. If his house is large enough perhaps you could find someone or a young couple who would want room and board for in exchange for some part time assistance. Loss of control is major fear for most of us as we age. If we have a sense that we are still in control, it is easier to accept change. If you suggested he "visit" his daughter that had room for him, for a trial run to see how he liked it or if it would work, would he consider it? Leave his house vacant during this trial period and assure him that he can return if it just doesn't work. He might find the initial move easier if he knows he can return if he wants. If the trial period is a success he might be more open to letting his house go. Taking care of aging loved ones is difficult. I wish you the very best.
  24. lahdedah

    Trying Rytary for the first time

    I've been taking Rytary for the past couple of months. It affects me much like C/L does except I seem to be on a more even keel. But, you must know that my reaction to C/L has been disappointing. It helps some but not like some of the accounts I've heard from others. I take a lot of Zantac for the upset stomach.
  25. lahdedah

    Driving and Personal Care

    I'm not a caregiver but a pwp. I have noticed that sometimes using a regular toothbrush is sometime difficult. I have started using an inexpensive battery operated one and may graduate up to a more expensive electric one. Would he use one? My mother was guardian for her sister. Getting her to give up old, worn or ill fitting clothing was often difficult. Finally, Mom would purchase clothing for her but insisted she "give up" some old article because otherwise her sister would continue wearing the old clothes. Would you DH wear new, better fitting pants if you bought them and removed the old ones? Maybe better fitting pants would help solve part of the problem. I've no answers about the driving issue. There came a time when my Mom could no longer drive. It was so hard for her to accept. We were lucky in that her family doctor was the one to tell her he didn't think she should be driving. I'm grateful as it deflected a lot of anger from my brother and myself. Wish I had some solutions and answers to the rest of your post. This disease is not kind to anyone - both caregivers and pwp alike.