Gail Dons
Forum Replies Created
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Two things have been special winners for me:
1- Urban poles for walking. Used correctly, they help reinforce good posture, give my triceps a workout as I walk, support my balance …and I get a lot of comments about how cool they look !
2- these make putting on pants all by yourself a breeze! Inexpensive and promotes independence!
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<p class=”p1″><span class=”s1″> I have seen a lot of research and got a few articles on depression and Parkinsons , but anxiety seems less well covered. I am interested in others who have mood swings that fluctuate with their medication cycle. I have reached the ripe old age of 75 and I had never had a problem with depression or anxiety until June 14, 2023 3 AM. I woke up with the urge to empty my bladder, and a burning sensation that rose up my trunk into my face. This was followed by a feeling like I was being given intravenous epinephrine, and it was coming out of all my fingers like lightning. I was terrified. It lasted about two hours. I told my neurologist that morning when I went for DBS programming. These episodes continued, initially with every medicine cycle, usually at the point on my level, levodopa carbidopa level would be at its lowest. They were relieved by increasing my dose of levodopa carbidopa. We increased it to the point where am I mail order pharmacy would no longer fill the prescription. I used mantras, music, intense exercise, as well as cognitive behavioral therapy to try and keep these attacks at bay. We tried turning the DBS off, but that made no difference, except I got all my dyskinesia back. My doctor started me on an SSRI. The attacks became less intense, but still unpredictable, and still some very severe ones. I find just the anticipation of them frightening. Next month I will see a neuropsychiatrist to to see what he advises. </span></p>
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Dear Jordana,
You will do fine after surgery with very little supervision. No high impact sports, no mud wrestling, of course. Each doctor’s post op instructions are a little different, but there usually are no dressing changes – you might need someone to help take the dressing off your head but then it stays off. You can do all of your own personal care – bathing, dressing, etc. It is nice to have someone around to make the coffee and make sure you eat on time!
I am 74 and was diagnosed with PD in 2013. I have never had tremors at all. However, despite low doses of Levo/carbidopa, I was developing dyskinesia that was becoming irritating and noticeable. GOCOVRI didn’t help, and gave me terrible insomnia. This January and February I had DBS. Because my problem was dyskinesia, the target was the GPi. My surgeon does the procedure in 2 parts, with the battery being placed with the first procedure. In fact, I chose to have the second procedure completely under local anesthesia, with no sedation. It was fascinating! (OK, so I AM a physician myself and all sorts of strange things fascinate me!) I could hear the sounds of my brain waves as the lead was being placed! And the best part is that I have had NO DYSKINESIA since my second surgery!
That is not to say I didn’t have any “bumps” in my recovery – instead of a “honeymoon” period right after surgery, when your symptoms improve temporarily without stimulation, I felt worse for about 10 days – I was drooling, having trouble walking, forgetting where things were, couldn’t use my computer. It was a little scary! I had decided to have DBS because it would make me more independant and functional and less a burden to my family, but here I was getting worse! By my 2 week post op check, things had normalized and I was ready to get “turned on”. We are still trying to balance the amount of stim with my medication dosage, but, with no dyskinspesia, anything else I gain is pure gravy! I am back working at the clinic again and loving it! -
Your words are encouraging, friends. I had R GPi DBS almost 2 weeks ago, and the L side is scheduled later in Feb. I am still in the “honeymoon” period and have not started any programming yet. Other than a simply HIDEOUS reaction to the adhesive on the surgical drapes, I found the initial 6 hr procedure rather entertaining (except the part where they shove your head – a somewhat emotional moment…) I am anxious to complete the process and see how it works!
More later… -
Your words are encouraging, friends. I had R GPi DBS almost 2 weeks ago, and the L side is scheduled later in Feb. I am still in the “honeymoon” period and have not started any programming yet. Other than a simply HIDEOUS reaction to the adhesive on the surgical drapes, I found the initial 6 hr procedure rather entertaining (except the part where they shove your head – a somewhat emotional moment…) I am anxious to complete the process and see how it works!
More later… -
let’s not get too crazy yet About commercial got bacteria products!. These studies only showed that certain bacteria caused abnormal neurodegenerative proteins to build up in the worm C Elegans. A warm intestine is rather different from a human intestine. There may be bacteria that are just as helpful or harmful in humans, but they may be different bacteria from the ones that do that same thing to worms. Fortunately, there are studies being done on human gut bacteria and the different types that are found more often in Parkinson’s patients then people without Parkinson’s. Stay tuned!
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You CAN have that faith, but you have to let go of a few misconceptions. This is something I’m really passionate about. No, I am not a minister-just a Christ-follower who has “been there and done that” for a few decades.“My thoughts are completely different from yours,” says the LORD. “And my ways are far beyond anything you could imagine. For just as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts higher than your thoughts.To let someone like that write your life story is frightening beyond belief, but that is where joy is found.We only think we know how our story should be, but our sight is both short and narrow. This sick earth is what happened when God DID give us what we wanted – control of our own lives and to know evil as well as good. And we screwed it up and broke it, irretrievably. I know we do not want to lose dear ones, or have others or ourself suffer. And life in the world we asked for is not fair. Yet God is making an incredible tapestry as He weaves the stories of this broken world together. We only see the back side, the mess of tangled threads. Sometimes we do get a glimpse of why such sadness, pain, and injustice is written intoour story, but for many things, we will have to wait until heaven. He does know what is best for us, and He has asked us to trust Him.Trust is not like instant mashed potatoes. You don’t pour it out of a box, add a few prayers and get it. It’s something you grow, and that takes time. You have to get to know the One you’re trusting. Remember,having our life work well here on this earth is not our highest goal. God never promised that – in fact , He told us it would be the opposite.We set our sights too low if pleasure, happiness and comfort are our aim here on this earth. We have to keep focused on the real race, and the prize – not a lovely life that works well here on earth, but the smile of our Savior as we cross the finish line, and a God that sees us …and loves us intensely, forever! But that doesn’t mean you just grit your teeth and swallow everything that comes your way. There is an incredible difference between “happiness“ and “joy“. Happiness is situational and temporary, joy is intensely satisfying no matter what is happening. Thank of Paul. His life really sucked! He was beaten to within an inch of his life on multiple occasions, people around him were murdered, he became deathly ill, and he was imprisoned multiple times, the last with a death sentence. YetNot that I speak from want, for I have learned to be content in whatever circumstances I am. [12] I know how to get along with humble means, and I also know how to live in prosperity; in any and every circumstance I have learned the secret of being filled and going hungry, both of having abundance and little. Now that is trust! And you’re right, it is scary, until you get to know the One you trust, and realize that you don’t have to do this by yourself. In fact, you can’t do it by yourself. Paul adds to that last statement: “[13] I can do all things through Him who strengthens me!” Corinthians 4:8-9 We are pressed on every side by troubles, but we are not crushed and broken. We are perplexed, but we don’t give up and quit. [9] We are hunted down, but God never abandons us. We get knocked down, but we get up again and keep going.Corinthians 4:16-18 (NLT) That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. [17] For our present troubles are quite small and won’t last very long. Yet they produce for us an immeasurably great glory that will last forever! [18] So we don’t look at the troubles we can see right now; rather, we look forward to what we have not yet seen. For the troubles we see will soon be over, but the joys to come will last forever.This could be a really long message, and I need to stop before I get to book proportions, but I would love to engage you further if you’re interested. Feel free to send me a private message on this site and we can talk more. I don’t have all the answers, but I know Someone who does!
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God promised us that He would only give us what was best for us. I have lived long enough to see how what appeared to be a really bad time was used to strengthen me for future things that came into my life. We don’t always get to see that connection, but we know we can trust Him. Sometimes I’m really disappointed, or even shocked when His way of writing my story differs from what I would like, but in faith I KNOW it is going to be good.
When I first told my family I had Parkinson’s, I wrote my children a letter that sums it up: “ …The idea of losing my independence, as well as my mental capabilities, kind of freaks me out. Yet God is so gracious. When He says, “Do not be afraid,” He really means it. To insist on retaining control of even these things when I say I am His is to miss my purpose in glorifying Him. I can truly say with the psalmist:“My heart and my flesh may fail, but God is the strength of my heart and my portion forever” Psalm 73:26
Our chaos, His peace!
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Remember, Dr Google never went to medical school…!
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…and it is hypothyroid people who are more likely to have swelling than those with an overactive thyroid.
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My feet swell every day, more in warm weather than in cold. It is because I have lousy blood flow in my legs – part of which are the doggone varicose vein’s my kids gave me when I carried them!
Swelling in the legs can come from many things: lousy circulation like mine, thyroid conditionS, certain heart conditions, etc. If this is a new thing, you should talk to your father’s primary care doctor just to make sure there’s nothing that they need to evaluate or treat. -
Agree with Andrew. It depends so much on how much functional substantial nigra you have and how slowly it deteriorates. Exercise, diet, and natural supplements may help. I did not immediately start on levodopa when I was diagnosed. Eventually I found out that I functioned more consistently with a small dose. (I could exercise more safely and didn’t trip and fall on my face!) Seven years later, I have made some modifications, but I am still on that low dose…with those good diet and exercise habits!
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When it comes to gene therapy, it’s usefulness in Parkinsons will depend on what you do with it. If you use it to make cells produce dopamine, that is already being done (see 5/25/20 article inn Parkinsons News Today:
https://parkinsonsnewstoday.com/2020/05/21/new-therapy-using-patients-own-cells-may-halt-parkinsons-progression-case-study-suggests/?utm_source=PAR+E-mail+List&utm_campaign=93c46cffa9-RSS_WEEKLY_EMAIL_CAMPAIGN_DAILY_US&utm_medium=email&utm_term=0_62dd4fb5e3-93c46cffa9-73233017The problem with making cells produce dopamine is that dopamine production is not the primary problem. The problem is that our dopamine producing cells are being killed off by alpha-synuclein that forms clumps and makes a mess of everything. The stuff will eventually kill off any new cells you put in that area to produce dopamine. Several previous studies that put dopamine-producing cells directly into the putamen found out that the new cells settled in nicely and produced dopamine, but eventually these cells, too, got killed off by the Clumping Synuclein! In your brain, Parkinsons is contagious! Now, if we could stop that synuclein from clumping..! The pathophysiology of synuclein is another big area of research. Does it clump because there is too much of it? If so, why? Can we alter this process? Research on the gut microbiome is looking at this, so if you have a chance to participate in any clinical research involving the GI tract, volunteer! Believe it or not, the constipation many of us struggle with may be part of the riddle!
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Mary Beth,
Hydration is a great place to start, because it has to be a part of ANY constipation treatment regime. Traditionally, good bowel function is made up of fiber, fluids and exercise. It’s sort of like a three-legged stool: do without one of these and the whole thing falls over. For some PwPs, having a properly balanced 3-legged stool is all it takes. For others, various other things must be added – and the right routine is as varied as each individual PwP. But first start with the easy stuff. Water is cheap. Exercise is good for many aspects of PD. Fiber can be deliciously added to a diet plan. Cheap, easy, doesn’t interfere with any of the meds. Add more ruffles if the basics alone don’t do the trick.
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My personal record in the constipation department was 2 weeks with no action. Miralax, Dulcolax tablets, Magnesium Citrate…nothing worked. I eat plenty of fiber. I exercise. I thought I was getting adequate fluids because my urine was usually very pale/clear. Then one day I realized that a large proportion of fluid intake was caffeinated. Caffeine can pull the water from your gut and put it into your urine instead. Voila! That makes nice dilute urine and stools like cement! I got a “Water” app on my phone and started tracking my water intake. Not as impressive as I’d thought. I set my target for 72oz per day and within 2 weeks my bowel function improved markedly. My MDS told me she wanted me to have 3 movements a week, and now most weeks I am there! I know this is not the perfect solution for everyone, because PD slows down the movement of your gut itself. However, for many PwPs that are new to this game, actually tracking your water intake and improving it may surprise you.
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The Parkinsons Foundation has a good booklet on diet and Parkinsons. “Nutrition Matters” Here is an excerpt:
“Protein in the meal is broken down in the intestine into amino acids. These aminos must travel across the intestinal wall to get into the blood. Then they must cross the blood-brain barrier to enter the brain. Sinemet also must transit the intestine and the blood-brain barrier using exactly the same carrier system as the amino acids.
Most meals contain a large amount of protein, and the amino acids use up all the “carriers.” The Sinemet must wait until the carriers are free again, in order to cross over into the bloodstream. The same thing happens when Sinemet tries to get to the brain, where it does its work. Once more, amino acids clog all the “carriers” and Sinemet can’t get through to the brain.
Therefore, it’s best to take Sinemet 30 to 60 minutes before eating a meal. This allows the Sinemet to be quickly absorbed before the food can interfere.” -
I have been on Azilect for 6+ years. I have not changed my diet. I eat salami, sauerkraut, cheese, drink caffeinated beverages and wine as usual (OK, I’m not a big wine drinker, but I do like my cheese!) I have had no problems. Mike P is correct about Azilect being a selective MAO-B inhibitor and any dietary interactions are not as prominent. However, you really do need to check for interactions with both prescription and over-the-counter meds.
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Hi Cemal!
I have never been on Amantadine, but, like you, I started my PD journey with Azilect. I didn’t see a whole lot of difference except I would occasionally notice my R arm was swinging all by itself when I walked, and I stumbled less. After about 9 mos, my neurologist advised I add Levo/Carbidopa. Also like you, I was very resistant,to this, wanting to save my L/C exposure until I got further along. I was afraid that once I started, it was a slippery slope to maxing out on dosage, increasing side effects, then not having it work when I really needed it. My neurologist insisted. I accepted his Rx, but I only took it when I really was bothered by symptoms. I have to admit, it really helped, but I still wanted to power through on my own and “save” the L/C for more severe symptoms.
Then I moved to a city with several major MD programs, and started care with a MDS. Bless that woman! She took almost 30 min talking to me, approaching my concerns from several different directions until I finally understood that the increase in need for L/C isn’t so much that your body gets used to it, but that as time goes on, the dopamine producing cells are dying off and you have fewer and fewer of the good guys to produce the dopamine you need. THEN she had to convince me that it was better to take my medication on a scheduled basis rather than whenever my symptoms were eating my lunch. She was SO patient. I am a physician (probably why I was so hard to convince!) She spoke at my level – high in some areas and abysmal in others! She gave me research articles to read. She didn’t ush, but it was bicuspid she cared.cFinally, I got the point. 6 years later, I am still on the Azilect, but I still only need 1 L/C every 5 hrs (3 doses a day). For me, this has worked so well that no one knows about my PD unless I tell them – and I am still performing surgery – very well, thanks!
Everyone is not the same, and what works for one person may not have the same effect on another person. But don’t be afraid to try the L/C if that is what your doctor recommends. If you wait until all of those neurons are dead, you will need high doses of L/C anyway to produce all of the dopamine that your body,just can’t.
Good Luck!
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I agree . Too much clutter. Once you sign in, it is hard to re-find the forum you originally wanted to comment on. – so you get discoiraged and quit.
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Don’t worry too much about the neuropsychiatric testing if your husband seems cognitively intact. The battery of tests varies with whichever neuropsychiatrist is giving it. It usually involves answering questions and performing tasks that test your memory, thinking process, language, and ability to identify things. They can also examine orientation, attention, and the ability to name objects, follow verbal, and written, commands, and copy different shapes. . I HATE the ones that give you 1 minute to name as many words as you can beginning with a certain letter. Sometimes you have to spell words backwards or repeat numbers backwards. People with poor cognitive abilities, such as those with Alzheimer’s, find it difficult to cooperate during DBS surgery, and often find that their cognitive abilities deteriorate even more after the surgery, so this is why they want to be sure that each patient is in good mental shape. They are not designed to be IQ tests, and there is not a certain “smartness score” you have to get in order to get DBS surgery.. the tests usually take a couple of hours, like a long morning, depending on the rests, your neuropsychiatrist chooses.
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Kiziks work the best for me. They are made for people who need help getting their shoes on – you can slide your feet into in the tied sneakers, support is excellent and style is good. I was in an inpatient rehab for six weeks after back surgery, and each day we had to get ourselves dressed, no matter how long it took, my Kiziks saved me about 15 minutes of frustration a day!
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Someone nentioned articles by the “Miracle’ yahoos as well as publications by respectable journals. Can you list any of these – I’d really like to read them. Also, do you have a bibliography for the extensive, and quite helpful summary of information you have provided us here?
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There’s a learning curve in being able to take inbrijia. You have to find that “ just right” rate to inhale the medicating. Doing it right decreases/ eliminates coughing., <<
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Thanks, Bill for giving a realistic perspective on the research that is being done and especially why what looks so on paper or in a rat/monkey/etc does not translate as well to the person. I am encouraged by some of the stem cell studies, but they have a long way to go, esp when you realize that the newly created stem cells the frequently get the disease themselves….and I’m not sure people realize that these stem cells are injected directly into the brain ( the stereotactic surgeons are loving this!)
Another topic that relates to the lag in research is that they need more of us Parkies to volunteer to try some of these things out. Phase 2 and 3 trials take a lot of volunteers. And not all trials succeed – but these “significant negatives” are important to know. So, please volunteer for appropriate clinical trials. You can find them listed in MJF site, as well asunder”Clinical Trials.gov . Your own physician or institution may know about local ones. Remember a lot of someone’s once volunteered to take Sinemet, at their own risk!
Now, research I am interested in is the idea of Sinemet pumps. They can decrease the fluctuations in medication, allowing lower daily doses to be effective, and thus decrease dyskinesia. They can also be set to vary the dose during the day = so you get an early morning boost so you can possibly wake up ON. This research is nearing completion, and the product will probably be on the market soon. I know, because I volunteered to stick myself with 2 subcutaneous needles each day for almost a year to see how this would compare with regular PO medications – and I was pretty sure I was in the placebo group. But they need people to volunteer and risk being placebos in order to do phase 2 and 3 trials.