Support Groups: Are They for You?
People from all walks of life are being encouraged to join a support group. You know, like a support group for recently divorced couples, those with an alcohol addiction, or people who have chocolate meltdowns, anger management issues, depression, illnesses, an addiction to chocolate chip milkshakes, and … perhaps I have said too much.
At any rate, if you have Parkinson’s disease or any other illness or addiction, by now someone, somewhere, somehow most likely has suggested the words “support group.” Now, if you are like me, the mere mention of “support groups” at one time conjured up visions of bearing your soul to strangers and having one of them become your newest high-maintenance friend.
I know I’m exaggerating and I hope you know it as well, but honestly, support groups scared me. And, I found someone else who fears the same thing! I suppose you could call us part of a group called “Support Groupaphobia.”
Sheryl Jedlinski of PDPlan4 Life says that from the beginning of her life with Parkinson’s as a caretaker, she knew that being part of a support group wasn’t for her. She ended up creating a traditional support group of her own with online friends she met through various Parkinson’s activities. She goes on to say that the women who form the group have “carried me through many an emotional meltdown.”
I have found the same thing to be true — online support groups are the bomb! That’s how I met Judy, Jeanette, and Tina — three women inflicted with the same disease and fighting the same fight who have become three of my dearest friends.
A support group can be extremely healthy for you if you are living with an illness or struggling with a life issue. It is good and important to connect with others who really understand your struggles, whether you choose to go online or in person. And if you feel you’re not struggling, then most likely there is someone who needs you to lean on and be encouraged by.
It’s a great place to share information regarding your journey with Parkinson’s — medication concerns, what to possibly expect/be prepared for, symptom clarification, lingo deciphering, relationship issues, etc. It truly is invaluable. You can laugh, you can cry — why, you can be that high-maintenance friend for someone else!
So, if you can’t decide whether to get involved in a support group, may I encourage you to be like the Nike tennis shoes and … just do it.
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Bonnie
I am so tired of hearing people say that you can "live with Parkinson's" disease. You die a slow, and agonizing death with Parkinson's. When you are diagnosed your life and the life of your spouse/caretaker changes forever. It SUCKS. Life is over.... There is so much money in the drugs used to "control" the symptoms that they are not trying to find a cure. Neurologists/doctors don't give a damn. They know there is nothing they can do. I'm so tired of the LIES!!
Sam chapman
I’ve recently been diagnosed with Parkinson’s well in November 2018 I’m yet to see a Nurolagist or any medical professional and won’t till June 20th 2019 I’m worried I have no control over treatment whether the earlier the better for me everyone seems not bothered about any urgency regarding my illness
Sherri Woodbridge
Hi Sam - I’m sorry to hear your diagnosis. Who diagnosed you if you haven't seen a neurologist or movement disorder specialist? And why won’t you have any control over your treatment? Hang in there and ask to be referred to a movement disorder specialist as they are your better option for treating the disease than just a ‘neurologist’. Good luck and remember that everyone’s case is different and will progress differently. Exercise is also a good thing to start doing if you don’t already.
Sam chapman
I went for a scan then was told to report to my own GP a week later he told me the results but didn’t give me any medicines so he’s we’re i am still awaiting any medical advice was ask by my G P what medicines are you on to which I said d I haven’t seen any body as yet
Edward Brown
Hi. My name is Ed Brown. Just Ed if you would. My normal doc told me I had Parkinson on my 63rd birthday. I am now on primidone. I take100 mg in morning and 50 at night. Says don't need to see neurologist until I have the trebles all the time with the med. Some days need cane to help with balance. Have 0 short term memory. Sometimes I walk like a very old man, hunched over and walk very slowly. Other times I can walk normally. I have taken to talking slowly and what I consider loudly so people can understand what I say. Are these signs of PD? Also I have a very hard time writing, sometimes even with the med. I'm hopeing he misdiagnosed me. Sorry if I am asking on the wrong page.
Sherri Woodbridge
Hi Ed - if i were you, I’d definitely get a second opinion/see a neurologist. Your symptoms mimic PD but PD symptoms can mimic other diseases as well... hang in there. You’re not alone in this. feel free to ask questions anytime...
Lenny
Hi My name is Len and I am the caretaker of my 90 year father. He was just diagnosed with PD with a sleeping disorder. He is currently in rehab. I live in brooklyn NY and everyone I speak to says he will need to spend down to get to Medicaid. He currently receives social security and a small pension. He lived independently up until a month ago. Very frustrating finding a social worker to work with and getting sound legal advice. I am up against the clock and all referrals and suggestions will be appreciated. Thanking you in advance. Lenny
Sandy Kazuko
Hi, my name is Sandy. I have a good friend who was recently diagnosed with PD. Is there information for those of us who don't have the disease but want to support friends and family? Any groups? Just reading the few comments above I can see that there are 'traps' to avoid saying to my friend. I want to help her have the best possible life but not to trivialize her situation. Any suggestions are welcome.
Sherri Woodbridge
Hi Sandy - what a great friend you are!!! My first thought is to scan the Parkinson’s caregiver pages on Facebook. There are several good ones. Also, there are several great books out now on PD that are informational and if you can do kindle, the cost is usually greatly reduced. Let me know if you need more help.
Michael
I still have to call to set up an appt but I am about to get diagnosed with pd.Have a resti g tremor in my left leg,Slow movement etc.Just very scared looking for help
Margie Christian
I am 64 years old and female and just found out almost three months ago that I have Parkinsons. I don't know how to cope with this news. The things about what foods I can eat, what to drink, and how to battle this disease insane. One site says limit your calcium intake because L-Dopa work well compeating with the calcium you take in and mess up the absorbtion of the LDopa (which I take). Another says don't eat beef, another says what can help is used caffine .Another
(which I can't take because of A-Fib)
says very little meat in dealing with this and my neurologist says eat what you want but be cautious. What does that mean "eat what you want but be cautious. The last week so far I've eating what I want and feel lousy. then he says (when another site says L-Dopa causes mood swings and then he gives me neudesta to take and says I may have PBA. I read on the box that he gave that neudesta is a psycho topic drug) A warning says people with heart disease should either be cautious taking this or not take it at all. What do I do:?:??:?: to many places or people are telling me stuff that doesn't match!
Lucy
Calm down and take it in gradually. Believe it will all make sense eventually with the help of doctors, specialists, rock steady classes, voice lessons, etc. it doesn’t have to all change in one or two months. The more you learn from the right sources, the more sense it will make. My best and beautiful friend has spent 1.5 years processing and positive approach is essential since She/he is CEO and has no intentions of giving into anything negative. Sleep meds can be adjusted in time because we all want more sleep with aging. you will spend more time making appointments and Going but never give up. It becomes clear with help and supportive family and friends. Find people on your side or give them up.