Parkinson's Pals

     
       When I got diagnosed with PD, I joined several Facebook Pages and I started a Facebook Page called People With Parkinson's.  I started the page at the end of March 2019 and there are now 544 members. Unfortunately, the number of PD patients keeps growing.  It is always good to gain insight and helpful comments from people who are going through the same thing.  I am also bereaved mom and I wouldn't be here today if it wasn't for the other bereaved moms who helped me through the worst time of my life, especially my friend Debbie, and  later my friend Priscilla.  Debbie and I both lost healthy teenagers the same year and I think that is why we connected so well. Debbie's funny comments and huge support literally saved my life!  Priscilla is my best friend and we also connected in a way that I can't explain.  We met online and now attend the same bereaved parents group at night.  And I run a daytime bereaved moms group once a month.  I am also an older adoptive mom and I connected totally with people who adopted in their late thirties and forties! I met my friend Deb G when I first adopted Olivia and we completely related to each other! Deb G is one of the nicest people I have ever had the pleasure to call a good friend! J is now one of my closest friends, we both adopted from Ukraine and used the same home study agency which closed in the midst of our adoptions.  That bonded us and then our friendship bonded us even more! I also started a Facebook page for Older Adoptive moms at the end of 2017 and there are close to 600 members now. I am a people person, I like to be with and chat with others who experience the same things. There is power in groups, power to educate, power to help and power to feel part of something bigger than oneself!

        I think I should join an in-person group of people who also have PD. There is a group that meets once a month not too far from where I live. I had joined a boxing class/gym for people with PD but my sciatica prevents me from attending. I went a few times but I was in even more pain after the class so I need to do something different.  I think I will try the group in November and see what it is like.  I don't like walking into a room where everyone else knows each other but hopefully they will be welcoming!  I enjoy chatting with  people online who have Parkinson's.  But I think I need to get to know some in-person people who have the same thing. And of course, every case is different but we all have many of the same symptoms.
        Last night was another tossing and turning night.  I slept from 11:30 - 2:30 and then I was up until 8:00 and then fell back to sleep for almost an hour. Maybe I should go back to medical marijuana!

Comments

  1. HenrilouOctober 28, 2019 at 10:49 AM

    yes go back to marijuana..I find it so odd when people will take all kinds of drugs but worry about pot if it works it works..

    ReplyDelete

Post a Comment

Popular posts from this blog

Akinetic-rigid Parkinson's Disease

Image
       My Parkinson's symptoms seem to be different almost everyday. Some days I am dog tired and other days I seem to have some energy.  It is difficult to make plans too far in advance because I never know what my Parkinson's will be like on any given day.  My worst Parkinson's symptoms are being off balance and overwhelmingly sleepy!!  I don't know if it is a Parkinson's symptom or  not but I now have such vivid and bizarre dreams! Perhaps it is the liquid medical marijuana that I take at night to help me sleep!! My sciatica,  however, seems to stay the same. It is just pain all of the time unless I take Tylenol or a muscle relaxer. I have spoken to several people who have Parkinson's and many also have sciatica. I asked the doc this morning and he said there is no corelation.   Today I saw a new neurologist at a city hospital.  He diagnosed me with Akinetic-rigid Parkinson's.  He told me that there are two different types of Parkinson's diseas
Read more

Does My Family Really Understand My PD LIMITATIONS??

Image
        I was diagnosed with PD about a year and a half ago but I think I had it for close to a year before that. Once I got on the Carbidopa Leodopa, my life settled back into a "new normal" routine.   My painful Sciatica has always bothered me more than the PD. I don't have tremors, at least not yet. I think that is because I am in the early stages. I have a handicap license plate so I don't have to park as far away from an entrance as I use to have to park.  My husband is always willing to drop me off at the entrance if I don't want to walk as far.  But I try to do the walk so that I stay agile and my muscles don't freeze up too much.   My most noticeable trait is my slow, and shuffling gait.  I can still drive, totally take care of all of my personal needs, go out socially, travel, cook, etc.  I am scared when I have to go up a flight of stairs because I am off balance and I feel like I might fall backwards. I have a death grip on the handrail!  I am not a
Read more

June 2

Image
                June 2 is a very special day in our family.  It was the day that my beloved daughter Amy was born. I was so excited to have a beautiful little girl.  She was my most precious gift and that feeling has never changed.   Amy died at age 18.  After her death, life had no meaning for  us.  We just wen through the motions of living and existing because we still had to finish raising Renee, who was only 13 when Amy died. Dan had told me that friends of his, also bereaved parents, had adopted a little boy from Ukraine. I thought they were absolutely crazy.  Fast forward a few years and that tiny seed grew in my mind. Maybe it was Divine Intervention, I don't know,  but we decided to adopt from Ukraine.  I am so thankful to Ukraine for giving me two of their most precious gifts.  We must have been twice as crazy as his friends because we adopted not once, but TWICE!! We adopted Olivia in March of 2007.  There is so much paperwork to adopt and we had to make several trips
Read more