Back again with another question about spouse's DBS results

[dhill]

Hey folks, was on here back in Nov. - Dec. concerning my husband's DBS results. I am happy to report after much trial and error, he no longer has any noticeable Tremors!!! However, I do think it has affected his Personality, he just doesn't seem the same. I cannot say it is entirely due to the DBS, because he has so many other issues, 1. Bulging disc pinching a nerve in his back, and several other disc related issues, Orthopedic Dr. said he should not have surgery, as he and many other Drs. had seen that for some reason, Parkinson's and back surgery just do not work well together. They mix like oil and water, he said. 2. He has a knee that is bone on bone and has had surgery planned several times since last year, and had to be cancelled due to Covid. However, he was to have it last week, but had to cancel because his A1C was too high, leading to #3. Diabetes, He had gotten an epidural for his back problem (which gives him, one month of pain relief) but it drove his blood sugar up extremely high, and in addition to all this #4. 3rd stage Chronic Kidney disease.

So all this together, plus dealing with what we have all had to deal with for a year now COVID restrictions, that could bring on the personality change, for sure. But, I am wondering has anyone else who has had DBS, did you experience personality changes, depressed more than you were before??

and also, he now has a lot of leg cramps and RLS at night much more than he had before, did any of you DBSer's experience that? and if so, what have you done to help the problem. Sorry, this is so long, guess I just needed to unload, as a spouse/caretaker, it's a lot to understand.

Thanks, for any replies I may receive.

Dianne

[chartist]

Hi dhill,

That is a very significant list of health issues! Diabetes can contribute to CKD and PD.

Something that has shown benefit for CKD, PD and diabetes is melatonin as outlined in these studies linked to below.

These first two studies suggest that melatonin may have value in CKD:

pubmed.ncbi.nlm.nih.gov/252...

pubmed.ncbi.nlm.nih.gov/324...

These next two studies suggest that melatonin is useful for PD. The first study used 10 mg of melatonin every evening to good effect. The second study used 25 mg of melatonin at noon and 25 mg of melatonin 30 minutes before bedtime for a total of 50 mg/day and showed a tendency toward improved motor function.

pubmed.ncbi.nlm.nih.gov/324...

sciencedirect.com/science/a...

The following study indicates that melatonin levels decline as we age. PD is considered an age related disease.

ncbi.nlm.nih.gov/pmc/articl...

The following studies discuss melatonin and diabetes. The first study shows that just 6 mg of melatonin per day lowered damaging inflammatory mediators in T2DM.

pubmed.ncbi.nlm.nih.gov/303...

This next abstract discusses how melatonin can reduce oxidative stress via reduction of reactive oxygen species (ROS) in T2DM. Reduction of ROS can lead to protection of pancreatic beta cells which are easily damaged or destroyed by oxidative stress. Damage to these cells can equate to a worsening of T2DM.

pubmed.ncbi.nlm.nih.gov/296...

The following two studies suggest that melatonin may be useful in the treatment of disc degeneration in the spine:

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/319...

The following studies suggest that melatonin may help with depression, but these are not strong studies in this respect.

pubmed.ncbi.nlm.nih.gov/300...

ncbi.nlm.nih.gov/pmc/articl...

Unfortunately, because of the decline of melatonin as we age, the protective effects of melatonin in humans and animals also decline with age. These studies are something you can discuss with your husband's doctor to see if melatonin may be a consideration for your husband given its very good safety profile in humans and animals at a very broad range of dosing.

Art

[dhill in reply to chartist]

I thank you SO VERY MUCH & will be looking into this!

[chartist in reply to dhill]

When you have time, I can make a suggestion or two for the degenerative disc situation.

Art

[dhill in reply to chartist]

Sorry, it's taken me so long, but am interested in any suggestions for disc situation

[chartist in reply to dhill]

For the degenerative disc disease (DDD), oral hyaluronic acid (HA) may be useful at a total of 300 ~ 500 mg/day. Up until about 10 or 12 years ago, oral HA was not thought to be effective for anything, but studies since that time period are starting to show benefit from oral HA. In my experience it takes 300 mg per day up to 500 mg to see benefit in DDD. Here is a link to a product that I have used and recommended to others.

vitacost.com/now-foods-hyal...

I started at 300 mg/day and did not need to go to 500 mg. I would not exceed this dosing range myself. This is just something I tried on my own, so unfortunately there are no studies to support my experiment nor the people I told about it. I allowed 2 bottles to see if it would work, and in my case it did start to work within the first 2 bottles.

Please check with your doctor to make sure this will be safe for you and compatible with all medications you are currently taking.

Art

[dhill in reply to chartist]

Will check this out..Thanks for info!

[wifeofparky]

Do you know what meds were injected with the epidural? Steroids can effect glucose levels and A1C.

[dhill in reply to wifeofparky]

Not exactly, but know it was some steroids for sure

[Hidden]

I've had a number of issues, 12months ago, 3rd infection post surgery combined with settings that had me apathetic, manic and suicidal all at once, I even told the neurologist "I'm going to walk out now before I smash your &?@&!@ head in", a nurse stopped me walking out of the hospital and got me to turn the DBS off, what a life-saver, 20min later feeling a lot better mentally. Was admitted to hospital, surgery to remove parts of the system due to infection, discharged 3 weeks later. And there is more, i struggling to.type, now sorry

[dhill in reply to Hidden]

So so sorry, you experienced such a terrible experience.

[Jana86]

I have PD, but have not had DBS,. My husband did have leg cramps and RLS. He had a hospital stay last falll and they checked his magnesium levels. He has type 2 Diabetes and was told magnesium deficiency is common for diabetics. He takes magnesium daily and the cramps and RLS are gone...it took awhile but it did work. In the meantime, he used Theraworks, an OTC spray, that when used immediately, will suppress the cramps. I realize that cramps and RLS may seem like the most minor issue your husband is facing, but it was awful to watch my husband cry out in pain suddenly and struggle to move......his quality of life is much better. Perhaps you could ask your doc to check for magnesium deficiency? Hope that is helpful.

[dhill in reply to Jana86]

Actually, his heart doc. Started him on Magnesium recently but it has not helped with RLS or leg cramps

[chartist in reply to dhill]

If oral magnesium does not help, try topical mag oil applied directly to the cramp area. It usually eliminates the cramp in a minute or two. Here is a typical product on Amazon :

amazon.com/Magnesium-Oil-Sp...

It helps with RLS to a much lesser extent than for cramps. It also helps with some aches and pains as well as arthritis. Read some of the product reviews to get an idea of the many things that people use it for. One of those 8 ounce spray bottles will be plenty to test what all it may help your husband with. In some people it can help with nerve related pain, but not everyone. It can help with sleep when applied to the chest, shoulders, upper shoulders and back and sides of the neck because it makes those muscles relax in people who carry a lot of tension in those areas which can make it hard to get restful sleep. Apply a small amount to an inner forearm to check for reactivity for a day, before applying it to larger areas.

Art

[Husbandsupporter]

You will have lots of good suggestions and ideas and even possibly you'll get affirmation on your assessment. I just wanted to send my heartfelt prayer of support for you as caretaker, partner, spouse, and helper. You have listed a long and daunting list of issues . I hope that you can/ will allow yourself to exit from the pain, illness, and issues, and have an hour or more just for you!!! Listen to music, walk, sing, journal, go shopping, be in the sunlight, read to escape. You are important. You are needed, but you also need to love yourself. Peace to you and prayers and all good thoughts for you and your husband on this journey.

[dhill in reply to Husbandsupporter]

I thank you for your kind words, & I know I should, but does get hard to find that time. Bless you for your concern

[Andrac]

Diane:

What a long train your husband has to pull and you certainly have several more cars to pull than he does.

As the care partner for wife with PD and doesn’t even want to consider DBS due to her long train of physical and mental conditions.

Some days when you wake up and realize that you are on guard again to lift him up when he falls, boost him up when he is down, smile when he cries, and most importantly not let him know how much your heart breaks for his lifestyle with these concerns.

Please know that many of us walk beside you and know of your struggles and are here to lift one another up and offer support to one another. We don’t walk in your our shoes but they are of the same fashion shoes, some old and worn, some just broke in and some ready for the dumpster.

As we said back in my Navy days aboard and aircraft carrier, “stand by for high winds and heavy seas” calm waters are on the horizon!

Blessings

Bill

[dhill in reply to Andrac]

Thank you Bill, Praise God, not all are down days, we do have some Up days! Bless You!

[pdpatient in reply to Andrac]

Very eloquently put, Andrac!!

[pdpatient]

Dhill, I see your husbands laundry list of med issues and I feel very bad for you, your husband and your family. I will pray for you and your family and I am sure God will stand by you during your time of need.

I see that Art and others in the forum have given you plenty of advice. I only have one advice to give and it is something that your husband will not like and will resist. That advice is to aggressively control his diabetes. That is the key to everything wrong with his body. Bring it below 7 for the A1C. It can be done and it will make him feel better overall. As Art said, diabetes and Parkinson's don't go well together.

I know because I too have Parkinson's and diabetes. I find that I feel and move immensely better when my diabetes is well and tightly controlled. However, as I warned you, it is not easy to do. I still get angry at my wife when she controls my food. I didn't have DBS and my wife also complains about my change of personality. So, it may not be anything to do with the DBS.

Cheer up and work on the diabetes 👍

RKM

[dhill in reply to pdpatient]

Sorry, I haven't been on to say thank you for your comment pd patient, I think you are SO right about the diabetes & how it affects. Sadly, my husband was to FINALLY have knee surgery done in Jan. but during Pre op testing his A1C was @ 9.5 , so was told had to get down below 8.5 in order to have surgery done, was set for next week 3/17, add A1c test yesterday & it is only down to 8.5, so waiting to hear if Dr will go ahead or postpone 😏😒

[pdpatient in reply to dhill]

Thanks for the response and update, @dhill. BTW, what was your husbands A1c at the time of DBS surgery?

RKM

[dhill in reply to pdpatient]

Looking back in the records, we find it was 8.5 then also, but nothing wS said to us about it?!?

[chartist in reply to dhill]

dhill,

What may help get your husbands A1C down to a better level is Berberine a common supplement. It will also improve other T2DM parameters and has a good safety profile.The downside is that it can cause gastro distress in some people, but it seems worth a try. The upside is that it can lower A1C by as much as 12% and that is enough to get it well into an area where his doctor will accept it! Plus it is beneficial for other T2DM issues. Overall, a very good supplement for T2DM. If he is not already taking magnesium in a bioavailable form, it might be worth considering as it can also have a modest A1C lowering effect, but not as well as Berberine. Definitely worth discussing with his doctor. I'm sure I can find studies and articles to support this use.

Art

[dhill in reply to chartist]

Thank you Art, is this by prescription? Or purchased OTC?

[chartist in reply to dhill]

Here is a typical "berberine extract" product at 2 per serving = 1200 mg.

Art

[dhill in reply to chartist]

Where can I purchase this?

[chartist in reply to dhill]

I guess it would have helped had I actually included the link in my last post! Here is a link to a typical Berberine Extract . Try reading the reviews, including the few 1 star ratings:

amazon.com/Berberine-Extrac...

Just as a side note, studies in mice and rats show that berberine increases BDNF production. Something that is possibly useful in PwP. Those same studies suggested that berberine may have antidepressive effects.

Art

[dhill in reply to chartist]

Art, thanks so much, will be ordering right away! All info so much appreciated!!