Alan M
Forum Replies Created
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My attempts at “adaptive clothing” has been thus far:
Slip on loafers (no laces)
“live in” house coats (Kiwis call them dressing gowns) — don’t leave the house that much
hoodies in winter and oversized T-shirts in the summer
snaps on my men’s shirts (no buttons) — this is a pain if they sew buttons on the cuffs
Velcro vests
Zipper jackets (but must have extra large “Zip” part)
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I was prescribed A/D’s by a Dr in 2008. She noticed I might have had depressive symptomology comorbid with my Asperger’s (I was diagnosed with ASD by a psychologist at age 52). I was first prescribed Fluoxetine, and then switched to Venlafaxine. Been on the latter for the last 8 years.
I believe I am no longer “depressed” in the conventional sense. I am convinced my “low moods” spring from poor sleep and REM-SBD, along with occasional comorbid bouts of anxiety. I’m convinced that Ax is worse the poorer sleep we get! I’d be lying if I said persistent tremoring doesn’t piss me off and make me sad, both.
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Just found your posting, Ally. Short answer — NO. And aside from advertising in the local news and commencing a group myself — I wouldn’t know how to forge and/or connect to a support group. I coincidentally bumped into a lassie my age with PD in my local Genealogy Group. That’s it. The peeps in the PD Nurses’ gatherings aren’t that extroverted, maybe? I know I’m not.
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Hey Ally:
I read Doc Irish’s column. It does make sense to me. What doesn’t make sense is your fiinal query: What would the conversation you mention sound like? Who would be included. As I do not have a “care team”. Unless you consider my neuro, the PD Nurse and my spouse being the team — in it’s entirety. Is that who you mean? I’d love to carry our discussion here out some more. You OK with this?
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Yip — I guess if I’m honest I’d have to say it has been somewhat a lonely existence for me (and if it wasn’t for my whanau and my spouse I’d likely end up a hermit).
It difficult for me to answer this excellent question precisely. As a Spectrumite, friendships have always been a challenge. I’ve been a certain type of recluse most of my life. Furthermore, as a therapist in small Aussie / NZ communities over the past 18 years (I’ve since retired), keeping clients separate from friendship came with it’s own special challenges. I’ve known many business acquaintances during my lifetime. But since my PD diagnosis, maintaining connections even with casual acquaintances holds it’s own set of hurdles.
There aren’t many support groups in New Plymouth. The Parkinson’s Nurse (employed by our local Health Board) tries her best to hold occasional hui, with the intent of bringing all the local Parkies together. But I’ve yet to connect with many — only one person has extended a hand of friendship — since attending these local events.
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Like Kurt, I’ve never connected my chronic Blepharitis with PD. I have struggled with Dry Eyes for at least 15 + years (thinking it was due to the CPAP machine pressure bleeding through my tear ducts at night). This was assumed, because my eyes felt like they had sandpaper in them first thing upon waking every morn.
Lately this same feeling happens more often when: a) I read books late at night, or b) while binge-watching movies on the Tele.
My eye have been damaged in the past while working as a forester in Black Spruce bogs. Following another person who releases a BS branch with it razor sharp needles — snapping back into one’s eyes. Scarring corneas.
I regularly use Lipsomal Eye Spray as I cannot tolerate drops being inserted in my eyes… this spray is spritzed onto the eye lids and leaks into the eye sockets.
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It seems like I’m about to lose my Aunt Francis someday soon. She has had the “falling” version of PD for the past 9 years. She looks very rough these days. Her daughter (my cuzzie) as her carer for the earlier phases but she has been in a care facility for the last 4 years.
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Sorry Ally… but I just noticed your “KeyMaster” title. Something popped into my mind — “The KeyMaster of Gozer” on GhostBusters. Sorry — just my weird sense of humor!
Back to your interesting query. I try NOT to live in the past. I try not to worry about what was. Nor do I try to worry about what might be (i.e. the future). “The past is history, the future is a mystery, the current moment is the PRESENT — and that’s why it’s called a GIFT.
Even struggling with PD, the present has always precious. The time spent with my sons, and time with my spouse, are all rare and precious gifts. I don’t need to “relive” any times ever. Nor do I look back and utter, “I woulda, shoulda, coulda“. My old granddad had an ancient saying from the Hameland (the old country)… “If you put woulda, shoulda, coulda in one hand, and a nickel in another hand, you’ll have almost enough to buy 2 doughnuts!” (When doughnuts were a nickel each).
We often WISH things are / were different (or aren’t too different). Me granddad was often heard saying to his mokopuna, “If wishes were horses, beggars would ride!”.
Cheers…
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Like Bob Brown, I was a trumpeter from ages 11 to 18 in a school band and later in a stage band. I also enjoyed playing along with “Music Minus One” vinyl albums on an old gramophone my mum had gifted to her. Maybe this is the old fashioned version of what Bob describes as “musical accompaniment software such as Band-in-the-Box”?
I sold my trumpet (a solid silver Getzen Doc Severson model) in 1976. Never should have done this! But hey, the impulse of youth often doesn’t make sense.
As I learned of my interest in my Scots heritage, I decided I might like to try to learn to play the GHBP’s. I purchased a stand of Norm Kyle highland pipes whilst attending Uni in Edmonton, AB. It proved to be my nemesis, unfortunately — especially since I had no way of connecting with a tutor, nor the funds to support lessons. Online stuff had yet to have appeal with the old desktop comps of the day (they were a jokes, and the old screaming Mimi modems were even worse!) I became a forester in 1985 and toted the GHP’s around with me to all the one-horse towns and backwater settlements. Lived mostly in remote communities and logging camps back in the day.
Me pipes sat idle until 2018… when I gifted them to our local pipe band. It took me 3 years to locate and purchase a set of “kitchen pipes” from a local fettler. They failed me, so I decided to purchase a stand of Fred Morrison Scottish small pipes (SSP’s). For the past 14 mos. I’ve studied at the knee of a renown tutor and Grade 2 piper located in Halifax NB named Michael Roddy. He is a expert musician, teacher and piper playing the SSP’s, the Border pipes, and the Uillean (Irish) pipes.
My fingering isn’t 100% when my tremors are triggered, but I can at least attempt to play a recognizable pipe tune that Michael has shown me (I learn mostly by ear). I can’t live without music. Celtic music. Pipe tunes. I love ’em all.
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Once again, what a great question, Mary Beth. You’re precious! I can see this one racking up the replies, TBS.
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Besides MJF, I don’t know too many “ordinary” everyday folk with PD — to me the one’s I tend to look up to, are mainly high profile actors and comedians, like Billy Connolly, Alan Alda, Robin Williams (RIP), Linda Ronstadt. and the like. Michael J is my ultimate hero after watching his doco “Still” recently. But then, so is his spouse, Tracy Pollan!
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Glad to hear it is working for you NanaLisa! Keep it up!
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Whoa! Now there’s a comprehensive listing! I’ll agree to most issues. I face these with much consternation. Can’t handle these most of the time.
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Kia Ora Lumpy: Wow… what a keen regimen! Sounds like it works for your hubby. Does he take Clonazepam whenever you are away from home base? If not, do you take anything else?
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Hey Mary Beth. I couldn’t agree more. My spouse was a stay at home mom for our three boys for over 22 years. Suddenly we’re faced with this huge change called PD. She is a real trooper and stepped up to the plate when this all transpired. But it hasn’t been easy for either parent to be honest.
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Thanks for this Marlo! I need to look into these alternatives more.
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Thanks for the Carrick Institute link, Sharon! I’ll research it forthwith.
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I purchased Dr. D. Bryan’s book “PD and the B 1 Therapy” recently — and am part through it. I’m getting the sense that High Dose Thiamine (HCL) can make a huge difference for us Parkies who struggle.
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I am the same as your hubby, Tammy. My brain fog has the power to make me forget a lot of daily details.  Also, RBD (REM-SBD) causes me to struggle with EDS (excessive daytime sleeps) and leads to periods of excessive fatigue!
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Kia Ora from New Zealand, Gauri! What a lovely post you submit about music in our life. It resonates so deeply in my experiences throghout my life — singing that is. Music used to be the essence of my life in my late teens and early adulthood. Notice I say “used to be”. As I let my lack of social graces and my inability to read musical score get the better of my progress. Instead of living and breathing the heart & soul of what I engaged with, I got stuck in the process of “excelling” at making vocal music (i.e. sounding professional). This stance is more about Ego than about living / breathing the essence of what our heart hears. Do you agree?
Unlike yourself, I don’t believe we’re all born musically talented. I know I wasn’t. I just love how most music transports the soul to heights no other means can possibly achieve. This is evident in PD and Dementia patients at latter stages of the disease.
Thanks for your beautiful words earlier. It reminds me to not lose why I even started listening to rapturous music throughout my entire life and of it’s truly healing nature.
Namaste, Alan
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Addendum:
I’ve seen my Neuro three (3) times — first for my Dx, then 6 mos. later, then one year later. Our next appt is scheduled in 12 more months.
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Kia Ora JB! I just wanted to say how much I appreciated your forum post back in early Feb.  I most appreciated your perspectives on PD, sex and males vs. females. Equally the issues of spontaneity and ‘staying power’ stood out for me.
Reading your statement “I say, I feel, or we feel that if the desire is still there, and the love then there is no reason a good healthy sex life cannot be achieved. Definitely not as many times as when we were younger, but hey, it really doesn’t matter” brought a broad smile of gratitude to my face.
Can a healthy couple arrive at a compromise in terms of frequency in your experience? How did you and your spouse do this, if so?
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Hey Deborah — I totally understand “…the stress of the job exacerbated my symptoms” — I was same, especially my non-motor symptoms.
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Ouch Andy — that’s a rough ride!