Overwhelmed!

[LAM-16304]

I'm just diagnosed this month. 15 years of tremors without medical help. At 69 the progression of PD symptoms is racing out of control. Looking for information and support. Right now a lot of what I read is beyond my understanding. Too many acronyms and medical terminology. I need the newbie versions.

[park_bear]

That was my reaction upon being first diagnosed. That said, you are going to need to ask specific questions to get the answers you want.

[Bolt_Upright]

You should join us on the Zoom calls MBAnderson is so nice to host. You will meet lots of nice people who know almost everything about everything. You WILL be welcomed.

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[overcomer2024 in reply to Bolt_Upright]

I am over 10 years since diagnosed

I would like to join the Thursday night zoom

Is it still going (October 2024)

Belinda

[Bolt_Upright in reply to overcomer2024]

Please join us! These calls are more reliable than a Timex watch!

[LAM-16304 in reply to Bolt_Upright]

I tried to go to the zoom site but couldn't connect. Technology hates me.

[Bolt_Upright in reply to LAM-16304]

Please try again on the Thursday call. That link works all the time, so if you can find somebody to help you, you can experiment until you figure it out and then you will be all set when the call comes around.

[Rufous2]

LAM-16304, try to give us more specific information, if you can. 😀

Exactly what symptoms are racing out of control? Have you been started on medication? Which ones? Do they help, have side effects that are bothersome? Is there a "most pressing issue" you want people here to help you with?

[LAM-16304]

Good questions. Here is a list. Anxiety disorder, drooling, tremors, headache, hyperhidrosis, insomnia, irritable bowel syndrome, ocd, overactive bladder, perseveration, phantosmia, skin cancer to name the most insidious. Many others. Seeking information on what others do to minimize the impact on their daily routines. I currently am just starting carbidopa-levodopa 25-100 tabs three times a day with trihexyphenidyl - 5 MG. This is scary.

[Rufous2 in reply to LAM-16304]

That's quite a list. I can see why you're overwhelmed and understand how scary this must be. Hopefully the meds you've been started on will kick in soon and make things a bit more manageable for you.

 My first suggestion based on your list would be to try to incorporate some stress reduction into your life, as stress hormones and anxiety make all the other symptoms harder to deal with. Many people find meditation/deep breathing to be beneficial. Some like Tai Chi or yoga. What works for me is walking, preferably outside in a green space. My spouse keeps a journal, which can have multiple benefits. Not only does it allow you to "get things off your chest," it establishes a record that can help you figure out what's working as you try different things for PD. Ironically, it might take a little work to figure out how best to relax in this "new normal."  

Park Bear's suggestion about specific questions is a good one.....only way to eat an elephant is one forkful at a time! Prioritize something you'd like help with and ask about that. And never be afraid to jump into a conversation and ask for clarification.

[LAM-16304 in reply to Rufous2]

I haven't been idle up til now. I spent the last 9 months seeking answers from doctors. I currently am the carrier of an Axonic's nerve stimulater implamplanted in my butt that helps control bladder and bowel disfunction. I take propranolol (60mg er) for hyperhidrosis as well as black cohosh daily. Does not work well. I was taking gabipenton for neuropathy but it wasn't helping so I stopped. Tried copper compression socks to no avail, threw them away . Also tried vitamin B supplements for 3 months but that was a no go too. I've been seeing a pain specialist and a chiropractic neurologist for steroid injections but my insurance won't continue to pay for the rest of the year. I continue to take tizanidine which I'm not convinced helps. Insomnia exacerbates all my ailments which I take trazadone for. I tried adding melatonin to the mix but it didn't help. Right now I would like suggestions on how to help thought perseverance (music is my go to solution). And phantosmia, smelling phantom odors, mostly sweet not acrid. If you have read this far I appreciate any enlightenment you can share on my issues.

[Rufous2 in reply to LAM-16304]

Yes, I can see that you've been proactive, despite the magnitude of the challenges you face. Did you by any chance have a head or spinal cord injury that complicates your case? You've asked for help with some things I've not encountered here on CP before, and didn't know were associated with Parkinson's. Hopefully others with experience with your more unusual symptoms will weigh in.

I don't have PD (spouse has RBD, aka prodromal PD) but I do have idiopathic (unexplained) peripheral neuropathy, so I can suggest a few things on that front. It sounds like you've had a pretty extensive medical workup, so I'm guessing your B12 and B6 levels have been checked but if not, they should be. B12 deficiency can cause degeneration of the spinal cord, and if that's taking place, the amount contained in a B complex supplement would be insufficient. B6 deficiency is unlikely in light of your 3 month B complex intake, but you should be checked for elevated levels. It's the one B vitamin that can accumulate in some people and cause neuropathy.

Something you could consider trying if there's room in your budget for it, is palmitoylethanolamide. It's been used in Europe for many years for neuropathic pain and it's got impressive neuroprotective qualities, so some here are using it in hopes of slowing progression of PD. Easy to read about by googling. If you decide to try it, look for an "ultra-micronized" version and be prepared to take 1200 mg/day for at least 3 months....it's not a "quick fix." If it works though, it can eventually be cut down to 600 mg/day.

Benfotiamine, a fat soluble form of vitamin B1 can also be effective for neuropathy. Dose is usually 300 mg twice a day. B1 is widely (and successfully) used by people here, though most often in the thiamine hydrochloride form. A quick search of this forum will give you plenty to read on the subject.

I also suffer from insomnia and take trazodone when I must. Melatonin doesn't help much but I take it anyway, as it too has neuroprotective qualities and can help regulate circadian rhythm if taken consistently at the same time every day. Circadian rhythm abnormalities are common in PD.

I'm not sure about phantosmia, but many here experience anosmia, and some have had resolution of it. Is that something you suffer from as well? Perhaps you should start a new thread on this subject, so as to get the attention of those who have experienced this.

[LAM-16304 in reply to Rufous2]

I'm aware of the many factors known to systematically reduce symptoms of pd. However I am resistant to medicine that would be helpful. Little help from primadone, gabepentin and propranolol. I do daily work outs to sustain my fight against further progression of the disease. I do not have a support system in place. No friends or family to help. This website is my only connection with others too important yield. I'm practicing, mindfulness, stress reduction and exercise

[Rufous2 in reply to LAM-16304]

For sure, mindfulness, stress reduction and exercise will help you more than anything I can suggest. I hope you find some solutions for your most bothersome symptoms.

[Esperanto in reply to LAM-16304]

Although it should actually be mandatory for PD and neuropathies have your B6, B2, and B12 levels been tested as Rufous2 asked? What were the results?

[LAM-16304 in reply to Rufous2]

I don't know what anosmia is so I doubt that I have it. I rode a motorcycle for years as a mode of transportation, so I've had a number of brain injuries, a couple of them with bleeding. I haven't been tested for vitamin B levels and am working on a new theory. Just sent off to the laboratory a urine collection sample to determine whether I have an iodine deficiency. Which is proported to be the case in 97% of the population. The preparation for the test takes 2 days of collection then detoxing with vitamin C, B-2, B-3, magnesium and selenium. Salt loading comes after that. This can cause nausea which I already have from the c/l that I take now. Palm... is another medication I've never heard of , but I can look into it. I really don't want to take any more medication than I have to. I just got off all the psych medications 8 months ago. They were causing many side effects I couldn't tolerate. I am chasing answers to so many problems it is making me dizzy. So far this site has provided more thought provoking information than I bargained for. Thanks.

[Rufous2 in reply to LAM-16304]

Anosmia is an inability to smell. Hyposmia is a decreased sense of smell and both are common in Parkinson's. Neurologists will sometimes use a scratch and sniff test (Sniffin' Sticks) to test this. I know some people here have regained their sense of smell, which is why I thought you might want to start a thread about it. Maybe down the road.......

Palmitoylethanolamide is not a pharmaceutical, but a substance the healthy body produces that can also be taken as a supplement.

"Palmitoylethanolamide (PEA) is an endocannabinoid-like lipid mediator with extensively documented anti-inflammatory, analgesic, antimicrobial, immunomodulatory and neuroprotective effects. It is well tolerated and devoid of side effects in animals and humans. PEA’s actions on multiple molecular targets while modulating multiple inflammatory mediators provide therapeutic benefits in many applications, including immunity, brain health, allergy, pain modulation, joint health, sleep and recovery." ncbi.nlm.nih.gov/pmc/articl...

There's an awful lot to absorb and digest here. One forkful at a time, as they say! 😊

[janers]

i’ve been meaning to share with the forum that I have been taking ambroxol off and on, and realize that it is really helping me. When I have stopped because I ran out and then restarted, there is a noted difference after a few days of taking it. If you Google “ambroxol and parkinsons”, You will find articles that it is just now being tested in field studies. I order it from Europe because the FDA hasn’t gotten around to approving it here. It’s a very common decongestant medicine in Europe, and it has an enzyme, which I think has really helped. Check it out.

[Rufous2 in reply to janers]

Janers, that is really terrific, thanks for mentioning it. I want to ask about dosage, how it helps, where you order it, etc., but feel like I should encourage you to make a new thread about it, as I'll bet others would like to know too.

[park_bear in reply to janers]

How much do you take?

[janers in reply to park_bear]

I’m just taking one 60 mg tablet in the evening and one in the morning. I know they are testing with much higher dosages than that, but I think it’s helpful even at that low dosage.