Living with Parkinson's Disease - Meet others & come say hi

My heart goes out to you. I have some mixed feelings myself because my husband has the next level of what we have been told of having a neurogenic bladder due to probably parkinsons. I dont have wet diapers to change but i have to take care of a urinary drainage bag from his new implemented supra pubic catheter. Not sure which is best, changing diapers or facing a urinary catheter. Fyi, my husband started puddling around toilet and i thought he was missing toilet. In hindsight, he was retaining urine and when he thought he eliminated, his bladder was full of urine and he couldnt feel urge to urinate. I think his bladder was spilling out overflow when he puddled. This was uncovered when i suspected uti and he was referred to a urologist. If you have any suspected uti, i suggest consult with urologist.

Sometimes my husband falls as he is so weak using his walker. I have to stand with him as he walks. When he falls i call our local fire dept and ask them to give him a "lift". It is free wher i live in NC. The fire dept is very understanding. Also, we were rushed out of hospital after second trip to emergency room in same day. My husband was weak with covid and they would not test him until second trip and 5 hours later. We got home late in night as they wouldnt admit him to hospital. I was so exhausted and we got home and he fell for second time and fire dept came and placed him in bed..My husband is 74 years old. So keep in mind the fire dept when your loved one cant get up from the floor. Kind regards

Hi, yes we have a large carpet pulled tight over the floor. Then we generally use 3 bowls each. they vary in size and weight to suit the user. Also there is a smaller ball called a jack, this is thrown to the other end of the rink. Then players take it in turn to launch their three bowls. You win the end if you are closest to the jack. The bowls are biased so they curve as they slow down. At our club able bodied people may have a disabled wheelchair user on their team. I use an adapted electric wheelchair as I cannot stand up still enough to be able to bowl. I also use a pusher to launch the bowl as I don't have the strength to lift up and throw the bowl any more. A game takes about 2 hours

That is great that you have found exercises that can be done seated, @tony42miles. Exercise is so very important. I am not familiar with indoor bowls. Can you explain this?

Hi, so I am a newbie to this group. I was officially diagnose in 2017. Since then I have been trying many exercise programs. For me most of those have been seated as I use a wheel chair a lot of the time due to a chronic spinal problem. So what worked for me. Seated Tai Chi was great, very relaxing and really good slow moving exercise. If you are able to stand try table tennis, great therappy. Use a childs fishing net on a pole to pick up the ball. My current exercise is wheelchair indoor bowls and hydrotherapy.

Yes. Parkinsons.org is acting help.

Hi,

At the moment because there are major changes in my medication, keeping the Dopamine balanced is challenging. Rasagiline is being titrated down. I started taking a tablet every other day, then missing two days a week later, now I am entering a week where we miss three days. On the days when I take a Rasagiline tablet I need less Levodopa as the Rasagiline still appears to be contributing to the available Dopamine. Also the Opicapone is starting to get to a therapeutic level. I have had periods of Dyskinesia some severe during this process so am now very aware of getting the balance right.

he other thing is pain. Is the pain caused by Dyskinesia spasm or is it a withdraw symptom from the Rasagiline, or is it just caused by spending 5 traumatic days in hospital. Not sure really.

The unexpected discover of blood clots, albeit small ones is also concerning. I am on blood thinners. I guess I don't really know why I should suddenly get blood clots, or have they been there for a while. Could it have been related to the excruciating spasm I had when the medics tried Encapatone. I don't know. Can you even get blood clots from a muscle spasm that lasts a couple of hours?

Sorry lots of questions. Its probably because I am learning to be in the real world again rather than the dream world I was in at the hospital.

I need to get back to doing wheelchair bowls and hydrotherapy again, that will hopefully do me some good.

Loads of rambling and off loading I am afraid.

Hello @tony42miles and welcome to the PD support group on Mayo Connect. I see that @sillyblone has already replied to many of your posts and has offered some personal experience about her husband's PD. Hospital experiences for PD patients require a lot of diligence on the part of the patient, and if the patient is not able to be diligent (especially after surgery) you need to have a caregiver by your side to be sure that your needs for medications and movement are being addressed.

Here are some important guidelines, from the Parkinson's Foundation, for hospitalization if you have PD:
https://www.parkinson.org/resources-support/hospital-safety-guide
You can order the safety guide or download it for future reference. Getting your medications on time is very important. Also, being up and moving is necessary to deal with the stiffness that can occur during hospitalizations.

How are you doing now, Tony? What are the most difficult symptoms you are dealing with?

You are certainly welcome. I am thankful that you are doing better. 🫂

I can certainly understand what you and your husband went through. The altered mental state was my new reality. I thought I was in prison with a death sentence. I was so scared. The meds are so powerful that they can create this. I bow to the people who helped me through. My son spoke with me on the phone while they were giving me the new drug. The nurse was calling me her friend and holding my hand. A very humbling experience. Only minutes before I was searching my room for hidden cameras. Anyway I am mostly back in the real world again. Thank you for sharing