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

Hello @edieteresa, and welcome to the Parkinson's support group on Mayo Connect. It sounds as if you have had a difficult time getting a diagnosis. Many of us with Parkinson's waited for several years before we found the correct diagnosis. How are you feeling now?

Have you begun any treatment yet? I'm thinking of medication or an exercise program? If so, have the treatments been helpful?

I look forward to hearing from you again. Will you post updates as it is convenient?

Hello @cacrouch1958,

I'm glad that you found this forum. I see that others have posted with you. It is good to hear that you have a strong family support system as well as faith. I can understand the difficulties you both must be feeling now that the PD is progressing.

There are lots of speech therapists who can assist with swallowing and speech problems. @ethel2017 has mentioned one program, and I'm sure that your neurologist has speech therapists that provide help for his or her PD patients. I have personally had speech therapy and found it helpful.

As your husband's temperament has changed with the physical changes, have you mentioned this to his doctor? There might be medications that will help him to adjust to the changes that are taking place.

Hello, I am Edie. I was diagnosed with Parkinsons on July 26 of this year after spending thousands of dollars with doctors trying to find out why I was blacking out with no warning. I had one syncope where I fell into the bathtub breaking my arm and thumb on opposite arms. All of the mris, stress and cardio test came back clear. I have no one for a support system.

Hi, my husband has had Parkinsons for 15-20 years. Last 3 years it has progressed. However the past 3-4 months there’s a noticeably progression. Weekly falls and speech is soft and using a walker. His mind is doing well and he is able to care for himself. We’ve been married 33 years and never argued or raised our voice at each other in the past; but have a few times this past 3 months. The arguments have been regarding his symptoms, not driving and him disagreeing. He is more irritable. His Parkinson’s is now affecting me.

We have a strong family support system and are moving into a gen suite attached to our son’s home soon. Our faith in Christ keeps me strong but I do get overwhelmed at times.

I still work from home part time with retirement in January of 2027. This is my first post here.

Hi Cacrouch1958 - Sorry to hear about the progression of your husbands Parkinson’s disease. It is a disease that seems to affect everyone differently. I was diagnosed in 2017 because of a tremor in one leg. I exercised faithfully until a few months ago when I developed a bad knee. Now I am facing knee replacement surgery. I don’t know how much longer I will not be able to exercise. At least I can still do my voice exercises, thank goodness. You said your husband’s voice was soft. There is a non profit organization that can help him with that, called Parkinson’s Voice Project. Did you know that the muscles you use to speak are the same as the ones you use to swallow so it is important to keep those muscles strong. I went thru their SPEAK OUT! Program and I practice the exercises almost every day and my voice remains strong. If you want to check this program out you can go to ParkinsonVoiceProgress.org and find a provider in your area. And you know the best part? There is no charge. I also have balance issues. I have been to PT for that but now with my bad knee my balance is really off. I have had to resort to using a walker but thankfully I haven’t had but a couple falls. Have you looked for a support group for caregivers? That might be helpful for you. I know how frustrating this disease for me, the patient, can be. I can imagine that you, the caregiver, is just as frustrated.

Hello Edie,
I cannot imagine not having help when you need it. I know you have been through so much already. I will be here if you need to ask any questions. My spouse has Parkinsons. 🫂

Hi, my husband has had Parkinsons for 15-20 years. Last 3 years it has progressed. However the past 3-4 months there’s a noticeably progression. Weekly falls and speech is soft and using a walker. His mind is doing well and he is able to care for himself. We’ve been married 33 years and never argued or raised our voice at each other in the past; but have a few times this past 3 months. The arguments have been regarding his symptoms, not driving and him disagreeing. He is more irritable. His Parkinson’s is now affecting me.

We have a strong family support system and are moving into a gen suite attached to our son’s home soon. Our faith in Christ keeps me strong but I do get overwhelmed at times.

I still work from home part time with retirement in January of 2027. This is my first post here.

Hello, I am Edie. I was diagnosed with Parkinsons on July 26 of this year after spending thousands of dollars with doctors trying to find out why I was blacking out with no warning. I had one syncope where I fell into the bathtub breaking my arm and thumb on opposite arms. All of the mris, stress and cardio test came back clear. I have no one for a support system.