PD Progression, stages and what to expect

This may not be relevant, but recently there was a warning that some nutritional supplements interfere with the effectiveness of PD meds. Many folks don't think to tell their doctors that they're taking vitamins and supplements, and many doctors don't explicitly ask their patients if they're taking vitamins and health supplements. This may or may not be a factor affecting your husband, but if he is taking anything like this, it's just a good idea to discusss this with your doctor.

ALSO, to@missbutterfly2be Another thing you can do that may help your doctor as well as his patients is this - if you go to an opthalmologist and he gives you something that helps, such as exercises, you can tell your Neurologist that you have done this and that it helps. If you also let him know you have looked into resources through Mayo and tell him about the support group, then he may tell other patients to use the support group to help solve some of their issues, or at a minimum, he may tell the next patient who complains of double vision to see an opthalmologist, so you can help others benefit from thngs that have helped you. We are all human and we have our strengths and weaknesses, but if we try to put ourselves in the shoes of others, (there is a doctor shortage and many doctors are overwhelmedd by their patient load) and your neurologist may not have time or energy to look far beyound what he himself has expertise in (imagine what it must be like to try to keep track of every new thing that may help PD patients - new meds, new procedures, things that keep popping up such as some vitamins and nutritional supplements can interfere with the effectiveness of PD drugs) but if you give him a tool - like the URL for the PD support group at Mayo, then he can share that with patients and get them something they neeed but he can't provide. It's not just a one-way street where the doctor helps the patients, sometimes the patients can help their doctors in little ways that end up helping everybody. and we patients can help in other ways. For example, there are lots of dispensing mistakes where the prescription said 10 mgs of something and the pharmacist filled it with 100mg doses. We all make mistakcs, but we can help ourselves by making sure that we know what the prescription is for, and checking to make sure that you've been given the correct prescription when you pick up your meds before you leave the pharmacy. Although it may be embarrassing to have made an error, any decent pharmacist will be grateful that you have his back - and double checked your meds. and prevented a tragedy.(and maybe if I were a pharmacist, I would ask the patient to confirm that the prescription was correct). It also has a broader impact - every time there is a medical mistake, there is a potential for a lawsuit. and the costs of those lawsuits eventually find their way back to everybody -- a doctor is sued and his malpractice insurance goes up, and then the cost of that higher premium is passed on to the patients, or,, the doctor may lose his license to practice or, if he's close to retirement, he may just retire early, makng the doctor shortage even worse.. We're all in this together, and can help ourselves in the long run by doing little things that can help our health care providers. No, I'm not a doctor or a health care professional. 😉 I just believe that there are lots of little ways we can improve things, and the more people who do this, the better off we'll all be.

Hello @plrcarol and welcome to the PD support group on Mayo Connect. I'm sorry to hear of your husband's symptoms and the struggle with low blood pressure. Is he currently seeing a movement disorder specialist? This is a neurologist who is specially trained in working with disorders like Parkinson's.

If he is not seeing a movement disorder specialist, it might be wise to ask for a referral. A second opinion is always a good idea when the current treatment plan is not working well.

As @dlc1953 mentioned in her post, exercise is a key ingredient in Parkinson's treatment. Has your husband been referred for physical therapy?

I look forward to hearing from you again. Will you continue to post with your questions and concerns?

Hello. My husband was diagnosed almost 7 years ago. His saving grace is going to the gym 5/6 days a week. He belongs to a group dealing with only Parkinson’s Disease, plus he also does Rock Steady Boxing. There were only a couple of times he couldn’t make the gym because of illness, and believe me he started to get worse. Back at the gym, he’s functioning pretty darn good. Excercise and movement is just as, or more important, than just medications. Good luck.

Yes this is just starting with my husband. Diagnosed 1 year ago im sure he has had it 5? Years. Hes on carbadopa/ levadopa But lately having low blood pressures weakness, confusion say wrong words for things. He says everything is dark it reminds me of a stroke and he gets very rigid when this is happening. Hes been in the hospital 3xs

It's certainly true that there are lots of things about Parkinson's that you do have to just live with. At the same time,while eyou may not be able to eliminate those symptoms, there are ways to make them easier to bear and diminish their impact on your life. I doubt that "you just have to live with it" is very helpful to you. You can seek out support groups where folks have found ways tomitigate the impact of their symptoms , making them easier to tolerate.. For example, PD can affects every muscle in your body , including the mussles that control your eye movement. There are some exercises for those mscles that may help mitigate your double vision, so check with an Opthalmologist. Children often have these problems and with the exercises they can be mitigated. I'm furtunate to have a neurologist who understands these things and she has referred me for various therapies to help. I didn't think I needed a speech therapist, but it turns out that she referred me because I wss having swallowing issues and the muscles for speech are some of the same muscles involved in swallowing, and I certainly don't want to end up with a feeding tube, so I pay attention to everything she tells me. Yes, you have to lieve with them and you can't make them go away, but you CAN do things to mitigate their impact on your life. You may not be able to change neurologists and your doctor may be very good at what he does, just not very good about some of these other things, so if you have good medical care you can get your other needs met elsewhere, like through a suppot group.

Yep! You are right on all counts! I am 80 and was diagnosed in November 2023, and had spent 3 years reaching that diasnosis because the only sumptom I had was increasingly sever fatigue I had become totally bed-ridden, but after I d]got diagnosed that meant there was a treatment and while I'm not the person I was before this experience, at least I can do many normal things and feel so much better and grateful for finally knowing what I have and getting some things that help. Looking back, I think I've probably had it for 10 years. When I was diagnosed, I was at Advanced Stage PD. The only thing you can expect from PD with assurances is that you will have your very own ,Custom-tailored PD. You'll share lots of symptroms with others and can get helpful hints on how to manage individual things. There are lots of on-line resources . I fould myself getting far more e-mails that I could ever read, becuase I signed up for them. But it's like getting a drink from a fire hose. I recently cut my 2 zilllion newsletters down to 2 - on is Mayo Clinit and the other is Michael J. Fox. I've found those to be useful. There may be others and you can spend all day keeping up, but that would interfere with exercise, which is extremely important, and I'm going to sign off right now and go do my sstretches for my back. I wish you the luck I have had in finding excellent medical care and support from friends and family.

I'm being evaluated for PD at Mayo. I've dealt with this on several occasions.

Thank you so much for making make feel less alone ! It is so hard to describe your sx to someone else! And, it decreases my anxiety about these sx to know that other

Hello @windyh and welcome to the PD support group on Mayo Connect. Yes, strength, balance, yoga and also Tai Chi classes can be very helpful for both the physical problems as well as the cognitive and fogginess associated with PD.

If you would like to try some of these exercises at home, YouTube has plenty of free exercise videos which might help you get started. Here is a link to some of those exercise videos.
https://www.youtube.com/results
Most of these exercises can be done while seated in a chair. This is good when you have balance issues.

Here is one of my favorite seated yoga videos,