I just found out my mom has Parkinson's. She is only 56.
My name is Nathan, I am 28 years old. I am married with 2 boys. Kruz is 2 1/2, and Kash is 7 months old. My wife and I have been married for 4 years. That is my background. My mom had a near death experience about 2 years ago, when she was having a heart ablation, one of her ventricles was nicked and she flatlined for 4 minutes. They revived her, and she has had a good recovery since. Since the incident she developed a small tremmor in her hands. For the last 2 years they have told her that the shakes were from her Prednisone that she was taking after the surgery. She just went over to a larger hospital in Wa state, (Harborview Medical Center) and they told her that she has Parkinson's disease. They are going to start her on medications to help the situation, and she also works out regularly, and is in very good shape for her age. I am very close to my mom, and my 2 kids are her whole entire world. My parents are happily married, they own a winery in Eastern Washington, and my dad is a shift worker as well. I am writing this because I am in need of some counseling, and I am trying to prepare myself for the coming future that my family is now up against. I have been educating myself on the disease, but I just found out about it and stumbled upon this website. I am looking for any sort of personal stories, or really anything that I can learn from others who are in similar situations. I am emotional as you can imagine, and hope this is enough to spark some conversation, so I can learn and prepare myself and stay prepared and ready to be there for her the best that I can be.
Thank You for your time in advance God Bless Nathan Kitzke
Hi Nathan, Thank you for submitting your story to our community. I suggest resubmitting your story to one our online support groups. You may share you experiences and connect with other caregivers there. Here you two you can consider:
- Parkinson's Disease Support Group: https://www.caring.com/support-groups/parkinsons
- Caring for a Parent: https://www.caring.com/support-groups/caring-for-a-parent
You may also find some useful information in our Parkinson's Disease resource center here: https://www.caring.com/parkinsons
I hope this information is helpful to you and that you are able to connect with other caregivers as you potentially begin a new caregiving chapter in your life.
My name is Herschel, and my wife diagnosed her own PD even younger than the age of your mother (she was a nurse). Ironically, the neurologist she went to told her she did not have Parkinson's, so she obtained a referral to the Geriatiric Medicine center at University of Mich in Ann Arbor. They put her on senimet, which showed sings of controlling the tremor she had noticed. As her only family caregiver, I have learned a lot and I would like to share some ideas with you:
1. She is very fortunate to have you as a loving and caring son. Keep learning all you can.
2. Every "parky" is different. No two cases of PD as the same and how the disease affects one person may be quite different from the way it affects another.
3. Your father is the primary care giver in the family and he will need support big-time as the days go on. He will probably struggle with the sense of losing his wife just as much as she will struggle with the sense of loss. Support groups are helpful, for both patients and care givers.
4. The only doctors to really trust are Movement Disorder specialists who are trained in the treatment of Parkinsons. PD is one of the most misdiagnosed and underdiagnossed conditions there is. It is also mismanaged in many cases. My sister-in-law was also diagnosed with PD (we had suspected it for some time), but her doctor when he prescribed the medicine gave her such a strong dose that she was nauseated whenever she took it. That is a common problem for Parkies. My wife asked he doctor to suggest a "ramping-up" protocol so she could get used to the medication gradually. We sent that to her sister, who showed it to her doctor. Long story short, she was finally able to tolerate the meds. Even the typical neurologist may not understand how to treat it. Encourage your mother to find a good doctor at a Movement disorder clinic (hopefully there is one near you).
5. One piece that families and friends sometimes have trouble with is the "Parkinson's mask." Parkies' facial expression is often affected (it becomes rigid and mask-like). The person sometimes appears to have a disapproving or unfriendly look on their face, which people find off-putting. It is hard to smile and the normal relaxed expression may not be there anymore. I go out of my way to laugh and joke with my wife a lot to help her "shed the mask." 6. On a personal note: the biggest challenges I have had are finding patience (she takes a lot longer to do everything, she drops things a lot), and dealing with my own anger. Anger, of course is one of the stages of grieving. It is necessary that you go through that and confront it, but try not to focus your anger at your mother. Realize that she is going through her own grieving as well. I hope these words from my own years of experience have helped. The experience of caring for a loved one with PD can bring you closer together than you ever imagined.
Nathan I'm sorry to hear about your mom. My husband was diagnosed with Parkinson 's about three years ago. He has lots of other health problems. Some days are really bad, but he still has good days. We enjoy every day as best we can. You all need to talk about this and make sure everyone understands but don't dwell on it. Be thankful for every day you have together. Enjoy each other. Let those little know and experience the wonderful family they have. That is what memories are made of. Read everything you can. There are a lot of good websites out there. But most important love and cherish your time now. I will keep you in my thoughts and prayers.Barbara