Category: Parkinson’s

On the Other Side

I began this blog in March of 2020 just as COVID was beginning to really grip the world. I was concurrently in the early stages of providing extended care for my wife suffering from Parkinson’s Disease with Dementia – or Lewy Bodies Disease depending on who’s doing the diagnosing. At first posting was sporadic but began to give me an outlet for expressing my hopes, fears, frustrations, love, and learning.

As time and disease progressed, my musings became more cathartic as I delved into music, travel, and continued challenge. When Pam died, I found myself more committed to consistent discourse on many subjects, but most importantly to me, about me working through my grieving process for a loss I couldn’t comprehend. You, my faithful readers, have supported me with your responses, your concern, your caring, and yes, love.

Therefore, I think it only fair and fitting for me to convey the excitement and wonder I am experiencing as I realize I have emerged on the other side. I’ve seen it approaching. I could sense the change in me. In my relationship with my Pam. With acceptance of things that, though I in no way wanted, could do nothing to change.

As it happened, it really began with the sudden decision two months ago that it was time to move closer to where my son and his family live. I realized that I no longer needed or wanted to be all the time reminded of my former life that was so viciously taken from me by a disease. My mate that I love taken away much too soon. Resolute, I began a new journey, still unfolding, that moved and accelerated at a pace I had no clue would catapult me to where I am now.

Since then, I quickly acquired an apartment, began moving “stuff”, and realized I could already live in it. Within a couple weeks I had abandoned my former house to begin a new chapter. I have not looked back. And though I so enjoyed that house, neighbors, and neighborhood, I am totally comfortable and excited in my new abode. Now I have sold “our” home. Soon to be forever in my past as I experience my present and my new future.

I have re-established, and in some cases begun new relationships with high school acquaintances from fifty years ago. I am realizing new opportunities to be a grandparent, a father to my son, and the possibility of new companionship and maybe even future love.

Those of you who know me know that I have lived with purpose over the last two plus years to work through my grief, to take care of my physical and mental health, with the goal of making to this new point of possibilities, new hopes for a happy future. I think I have made it!

Yet I recognize and realize that, as I venture into new and uncharted territory, times and places that extend beyond what had been, I will always love Pam. I will never forget her. I still think of her daily. And often I smile. I smile because I know that she knew that if she went first, I would get here and that she wanted this for me. I can reminisce about our good times without dwelling on the desperate last few years of challenge and sadness.

So I am sharing, and hoping to adequately convey, my feelings of excitement and thankfulness for all that has been and the prospect of things to come. My sincere hope has been that by sharing my experience I could be a guide, a comfort, a solace, to at least one other person who reads wutjavia. I can say confidently that I have made it. I am not so naive to think that there won’t be challenges, loss, and heartache in my future. But I have regained my strength and self confidence. I am ready to face what comes.

And it is amazing. And I just wanted you all to know. You have been instrumental in me mastering my struggles. I hope you sense and are edified by what I am writing today. I hope and yes, maybe even pray, that you can glean something from it. And… Thank you!

P.S. In the midst of my excitement and current euphoria, I just learned that my brother-in-law’s sister passed away last night after an extended illness. They have been geographically separated for many years but fortunately have had recent opportunity to be together. My sincere condolences go out to Eddie, his 100+ year old Mother, his younger sister, and extended family. My heart is sad in the knowledge of what they now have to experience (again) as they work through their grief journeys. Eddie, I wish you well!

It’s Getting Real – Again

(Shout out to K & K who should recognize the title)

It’s Thursday as I’m writing this. I don’t think I’ll be back in here until next week. I’ll be traveling to Nebraska as this post is published. Meanwhile, my week has become increasingly more difficult as the anniversary of Pam’s death looms. I can feel it in my entire being. Low energy, mood swings, painful memories that sprout up again from their dormant past.

Early last Sunday, having woken up in the middle of the night as is typical, I realized that the hour was close to that of Pam’s passing. One week to go – two years ago. Vivid imagery, as a painful video, played in my mind. I broke into tears.

On the phone with my sister during the week, while we were discussing the ravages of Parkinson’s Disease (her husband had PD also), I walked into the living room and saw in my mind’s eye, family sitting around the room, picture albums and scrapbooks removed from storage totes, evoking painfully good memories for Pam’s siblings and offspring. Always at least one person in the next room with Pam, just being, or praying, recounting memories, or feeding her ice cubes and popsicles. Anything to try to ease her pain. The vigil.

Once again the reminders of Pam’s impactful presence in my life as I go about my daily activities, remembering what we did together or how Pam’s way of doing things has become mine. All the while visions of her, early in our time together, until the end, like a digital auto-biography of her and our life together playing on the screen of my mind as if imaged there.

After all this time I realize that the place I least want to be is the bedroom and find it the most difficult room to be in. I dislike going to bed, giving up the day. Another day without my Pamie. I sleep fine once I get there. The challenge is just getting there. Not only do I miss Pam’s companionship, it is also the place where she breathed her last. The place from which she was taken away, never to return. I cry as I write this!

Last week’s post was a testament to how far I have come in my grief journey, following through on my promise to Pam that I would be okay. But now is a time of intense reflection filled with sorrow and loss. My trip to “Pam’s” bridge on Sunday will be equally, if not more, intense. Yet I know I must go. I’ve known it since I poured her ashes into the stream running through the Bachman family farm.

I don’t plan to make it an annual ritual, but as with many expectations in life, things don’t go as planned. If so, Pam would still be with me/us and we would be enjoying our retirement years traveling, maybe even to the family farm, together. And we would go so many other marvelous places, enjoying them together. But that is not reality. This is.

Parkinson’s Revisited

Because it is important

As the second winter storm of the week makes seeing even across the street difficult, I am staying warm and dry in my Eastern Iowa home. I’ll deal with the snow tomorrow! Meanwhile, we are still getting mail and in it a couple days ago came another packet from Parkinson’s Foundation.

Along with the usual thank you messages for being a faithful contributor and requests for additional support, it included a simple cheat sheet called “10 Early Signs of Parkinson’s Disease.” I am including this list here even though it is clearly stated through the link.

  1. Tremor: Have you noticed a slight shaking or tremor in your finger, thumb, hand or chin? A tremor while at rest is a common sing of Parkinson’s disease.
  2. Small Handwriting: Has your handwriting gotten much smaller than it was in the past? A change in handwriting may be a sign of Parkinson’s called micrographia.
  3. Loss of Smell: If you seem to have more trouble smelling foods like bananas, dill pickles or licorice, you should consult your doctor.
  4. Trouble Sleeping: Do you thrash around in bed or act out dreams when you are deeply asleep? Sudden movements during sleep may be a sign of Parkinson’s disease.
  5. Trouble Moving or Walking: Do you feel stiff in your body, arms or legs? Have others noticed that your arms don’t swing when you walk? If your feet seem “stuck to the floor,” you should ask your doctor about Parkinson’s.
  6. Constipation: If your diet contains enough fiber and water and you are still constipated, it can be a sign of Parkinson’s disease.
  7. Soft or Low Voice: Have other people told you your voice is very soft or that you sound hoarse? If there has been a change in your voice, you should talk to your doctor about whether it could be Parkinson’s.
  8. Masked Face: Have you been told that you have a serious, depressed or mad look on your face, even when you are not in a bad mood? If so, you should bring this up with your doctor.
  9. Dizziness or Fainting: Feeling dizzy or fainting can be linked to Parkinson’s.
  10. Stooping or Hunching Over: If you notice that your seem to be leaning or slouching when you stand, it can be a sign of Parkinson’s disease.

Some of these signs are typical as we get older. I am nearly seventy years old and could point to one or two from time to time. But several, especially in combination, are clearly worth discussing with you doctor.

Last year researchers found a biomarker, a protein named alpha synuclein as part of the The Parkinson’s Progression Markers Initiative (PPMI). The University of Rochester published an article called What You Need to Know about the New Parkinson’s Biomarker that does a good job of explaining the publication of the findings in The Lancet.

The importance of this discovery is that of early detection. It does not pinpoint a genetic root and therefore doesn’t point directly to a cure. But treating PD, even before symptoms manifest, is a step in the right direction.

Personally, I am interested in Parkinson’s Disease Dementia (PDD) and Lewy Bodies Disease, for one of these is surely responsible for Pam’s decline and demise. And all of these diseases, along with Alzheimer’s, relate to alpha synuclein protein.

So, what’s my point?

Besides simple education, I have two goals in revisiting the subject of PD, PDD, LBD, and AD. The first is to impress upon you who might acknowledge the symptoms to get help early. And though there is no cure, the hope is for better quality of life for as long as possible. If you have a family history of any of these diseases, check into testing for the biomarker. It can lead to earlier treatment and, again, better quality of life.

Secondly, there are several opportunities for helping in researching a cure for these diseases. Of course you can donate. Money always helps. The Michael J. Fox Foundation for Parkinson’s Research, the Parkinson’s Foundation, and The Alzheimer’s Association are all dedicated to curing the group of diseases associated with dementia.

There are also opportunities, such as the The Parkinson’s Progression Markers Initiative (PPMI), for contributing your personal information – and more – even if you don’t have or have a history of PD et.al. Take a look.

Pam and I knew so little about Parkinson’s-related diseases when we finally went to see a neurologist. The tremor in her right hand was the first physical sign. But looking back, we, her family, recognize that she was suffering from cognitive decline well before the tremor. Though recognizing the signs earlier may not have changed the trajectory or outcome of the disease, we may have been able to increase Pam’s (and therefore my) quality of life longer. Maybe Pam could have had a chance to enjoy some of her retirement – and we would have been able to enjoy her a little bit longer. So, if you notice any of the above changes, or have doubts about what you are experiencing, please don’t wait for someone you love to tell you there’s something wrong. Take care of yourself and therefore, the ones you love.

Stay warm and dry for the rest of the winter. Stay safe. Stay healthy.