Books particularly helpful to PwP

I'm a book person, so when I got the dx of PD, I asked PwPs what book they found particularly helpful. Got a very strong recommendation from PD Exercise person that THE PERIPATETIC PURSUIT OF PARKINSON DISEASE was the best out there. I'm inclined to agree, as its written by a bunch of people who are successfully coping with the disease. (the Parkinsons Creative Collective).

There are a whole lot of books on different topics related to PD but I'm interested in finding one that would be helpful in managing/optimizing , understanding or anticipating or making less stressful the relationship between Caregivers of PwPs and the Caretakers (us). Anyone have suggestions?

7 Replies

oldestnewest
  • I read the book you mentioned, such a long name, but a good read. I highly recommend a support group concerning the needs of PwP's & caregivers. And don't be afraid to express your thoughts when attending. I think some people hold back their thoughts, but they could be helpful to others. I loaned a good book to someone on the subject, but I can't remember the name. I will check on it & get back with you in a day or two.

  • As a new caregiver I'm really interested in this topic too, will follow with interest.

  • You know, the "in thing" with pregnancy in recent times is to talk about "we're pregnant". A joint experience... this largely joyful period of time is shared mutually.

    I wonder whether we should not also have the concept of "we" in relation to a progressive degenerative disease like PD... where one partner gets progressively more dependent while the other has increasing demands place upon them. Typically two lives are dramatically effected, not one.

    How one navigates, negotiates, transverses this difficult life passage would be a subject of the keenest interest to PwP and their partners. There are times when I am frightened and just want to be close to my partner and hold her close to me. There are times when I want to share a new symptom but don't know whether or not to burden her with this. I need to talk about it, my dispair... but what can she say? (Does PD offer any opportunities for deeper intimacy of souls, or is everything lost here?)

    Should I talk to them about new symptoms? and if so how? My inabilities or diminishing capabilities translate directly into more work and worry for my spouse. Life is about sharing the burden and the joys, but how can this be maintained as one slides downhill and responsibilites fall increasingly on one person's shoulders?

    I was fortunate to be able to help my partner over a six month period when she had three hip operations and was really dependent for me for everything. In fact it was during that time that I received the dx that I had Parkinsons. (we've had a lot on our plate) I honestly felt during that time that this was an opportunity to get a running start for my Parkinsons. Maybe build up some extra credits if you will. I helped with dressing, cooked, maintained the house, did the washing and shopping. Picked things up dropped on the floor. But in no way could I possibly compensate for where we are headed. Especially with dementia which is likely.

    A book that at least charts where the rocks are and some potential strategies to cope and build on would be so helpful.

    Frank

  • I'm not sure if this book is what you are looking for, but I thought it was a very informative book for a PwP, as well as for the Caregiver and family and friends. "The First Year---Parkinson's Disease: An Essential Guide for the Newly Diagnosed"

    byJackie Hunt Christensen. The title is a little misleading. It is good for a newbie, but it is also an excellent book for someone that has been diagnosed for however many years. I read it a few months ago and I was diagnosed 11 years ago, but I still got a lot of good information from this book.

  • Thanks, I'll have a look at it. People tell me the "first year is the hardest"... and I certainly hope the are right. I have been horribly depressed.

  • Try "EVERY VICTORY COUNTS" from DAVIS PHINNEY-----www.davisphinneyfoundation.org------1-866-358 -0285--------excellent treatise

  • Hi FMundo. The best book to get on how the brain heals itself is to be found in Dr Norman Doidge's new book, "The Brains' Way of Healing" is now available on Amazon in book and digital form.

    The news release on it can be seen at:

    wsj.com/articles/SB20167761...

    John

You may also like...