PD Progression, stages and what to expect

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.

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?

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.

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.

Hi, maybe he suffers from something else, like me;;. I was diagnosed with cerrebellair illness which means that my brain cells are slowly dying. Side-effects : lost balance, speach and muscle strength are almost gone, have incontinent problems, double vision, very. Low blood pressure. I try to stay positive but it’s not easy.

My diaagnoosis is Advanced Stage PD. I share many of the symptoms you describe. I'm 80, so I might have had sone of this as a consequence of having so many birthdays. As for your double vision, PzD affects every muscle in ypur bidy, and there are mucles involve in making your eyes play nicely with each other rather than jyst going off on their own. Lots of kids have a "wandering eye"(who goes iff on his own)or a "lazy eye"(who refuses to go along with his brother to look at rhe same things. There arr exercises for your eyes that can help encourage them to work together a bit better and an opthalmologist can give you some to try. (If they work for you, please let your doctor kniw this so if any of his other patients have the problems he can let them know. While it is true that PD can't be cured (yet) and to that extent you do have to accept that. However, often there are things you CAN do to mitigate its impact on you, and that IS something you CAN do about it. Iff you read alot, I would highly recommend gettingbs Kindle because there arr so many features that can make reading easier. 1. You can control both the font style and the font size, which has made a HUGE difference for me. 2. Yoou can control the contrast between the letters and the background, and can even have whiite letters on a black background, and you csn playbaround with these and otger features to tailr the settings that are tge mist comfortable for you. (If you find tthat this us helpful you might also let your doctir know so he can share that with other patients -- also give him the URL for the Mayo PD support group so he can let other patients know that will take advantage of it as they choose. I liive in Germany and don't know enough German (nor do I have the energy to tackle it for thus purpose) so on-line is great! And some folks don't feel comfotable doing things like in-person support groups, and this is helpful to them, too. Let the doctor know that it's miderated by healcare professionals, so if somebody cones up with an idea that may not have merit, the sponsor will gently let them kniw that perhaps setting their hair on fire is not the best approach for treating PD. As for you concern about brain fog and memory, there are some medications that may help mitigate the impact of brain fog and maybe the support group sponsors can describe them and you can ask your doctor about them. And, yeah, it's frustrating and sad and makes me angry sonetimes that my brain doesn't work the way it used to and sometines I am totally befuddled when the pages of something i've printed out fall out of the tray onto the floor and it takes me forever to put them in order. But put it aside for the moment and deal with it another time when the rest if my brain is reporting for duty. I have alson had a chat with my family whuch incudes 3 teenaged grandkids, and explained how my btain isn't working quite right sometimes, so if they notice me doing something that's not a good idea, they will make me aware of it. I won't be offended, but will welcone the help and I won't get mad about if they gently say, "Grandma, are you hungry? If so, I can give you a snack so you won't have to eat the lovely artificial fruit in the fruitbowl. And if I did get mad, I've warned them that they now have 3 grandmas:
1 is their mother's mother (Omi); one is their father's mother (me -regular Grandma) and the 3td one is PD Grandma, who may not act as nice as as Regular Grandma. But both Grandmas
love them. So do what you can to keep exercising your brain when you can and when your PD self takes over for a bit, just fix a nice cup of tea for each of you and keep your fingers crossed that she will go home in a little bit.

I have occasional double vision. My optometrist added a prism to my new prescription. I haven't used it yet.

Hello @hirschho and welcome to the Parkinson's support group on Mayo Connect. I appreciate your post about double vision. Is this a longstanding problem for you?

As this is your first post in the PD support group, please share as you are comfortable doing so, a bit more about your journey with PD. For example, how long ago were you diagnosed, and what symptoms led to the PD diagnosis.

I have had the double vision for a while. I am not very good in remembering time. I notice it when I am watching TV and sometimes see two golf balls when watching a putt for example.
I was diagnosed a few years ago when I had vestibular neuritis and the balance issues did not subside.

@jatonlouise

You have offered some great suggestions! The only one I would add is to find a form of physical exercise that you enjoy and exercise at least 5 times a week. It doesn't have to be hard, aerobic activity; however, chair yoga or chair Tai Chi are great for balance and help with stiffness. There are free YouTube exercise videos available that are great with seated exercises.

What are you most difficult PD symptoms right now?