Alan M
Forum Replies Created
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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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Hey Ally: Over the past few weeks, I’ve stumbled onto three or four comedians online. The final interview with Johnny Carson and Robin Williams. Some stand up routines with Josh Stone (he’s a comic with Cerebral Palsy) and he’s a riot, and two especially hilarious routines from the same comic relief show starring George Carlin.
How these guys make us laugh time and again is beyond me. Guess that’s why we call them “Comedians”. They mostly see the bizarre side of life I suppose. I’m on the spectrum and have ZERO sense of humor. But these blokes can make me laugh from my belly no matter what they speak about! Kewl hh?
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Hey Toni. thanks for the interesting questions and unique POV. I never even considered trying footwear to solve this painful dilemma.
I’ve always focused mainly on chemical pain relief (i.e. taking paracetamol daily) more than footwear solutions. I live in my mufti slippers. Maybe that’s almost like going barefoot, what do you reckon?
I assumed our back pain must originate neurologically or out of the CNS. So the ol’ adage, “Better living through chemistry” seems to make a lot of sense to me.
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Mary Beth, just allow me to say you are an incredible key master! Not only do you ask very salient “pump primers” but your timing seems impeccable (for my journey, at least)! Keep up the great involvement with PD Forums, OK? And tell your dad for me that he is a very lucky bloke to have such a caring and perceptive daughter. He’s a very lucky man…
Your fan, Alan
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Hey all:
I was diagnosed at age 65 with no plans of retiring as I had three dependent sons on the spectrum. I’m now 67 and am fully retired. I was a practicing therapist and found it more & more difficult to manage not only my tremors with meds, but some of the less pleasant side effects of PD. This reality made it more and more difficult for me to continue working. Memory issues, poor sleep and severe back pain made (and continue to make) life unbearable at times.
I currently receive a retirement superannuation from the Govt. It barely covers our rent. My wife is trapped working after 22 years at home with the kids.  These changes have left me feeling bereft and afraid I made a poor decision retiring. Sleep disorder (RBD) plagues me along with my established sleep apnea issues (I’ve had this for 18 years). I’m experiencing more anxiety, depression and fear even though I take my A/D’s regularly. Music (playing and listening) is a lifeline for me in this sea of despair.
I struggle to keep active — but still am trying to keep it up, as I know exercise is absolutely crucial. I’ve decided to try Genealogy to keep my mind active. I feel my life is busier now than when I was semi-retired at 65!
Oh well, I’ll keep plugging along. It has to get better ’cause it can’t possibly feel any worse…
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Hi Mary Beth!
I was a forester in W Canada from 1985 to 1999. As such, I sprinted up 125% slopes and jumped from hovering helicopters onto landing pads, to get to the job sites. We worked out-of-doors every day, winter & summer.  The former season reached minus 35deg Celsius and required the use of “misery slippers” (snowshoes) and the use of snowmobiles. Needless to say, I was in good nick.
After this, I shifted from BC to Australia, trained to be a Pastor and then a counsellor (therapist). These occupations led me to become very sedentary, to say the least! I now weigh 20 kilos more than I once did. And I don’t erven want to go out much these days.
Sad, really…
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Went to H/S with me best mate… we graduated in 1973. He and I have known each other for a half century this year – and I consider myself to be one of the luckiest blokes on the planet to know him. We nearly lost him to cancer in the late 1990’s, but he pulled through and continued to bless the lives of everyone who knows him.
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My neurologist lives in Auckland, 5 hours away from NP. He avails himself every 6-9 mos. on average. I receive a letter from him summarizing the hui within 2-3 weeks after our appointment.
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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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I wish I had but one primary symptom to elude to… I guess mine fall under a cluster of related symptomology(s) of cognitive impact. Mostly RBD-related, memory falters (why did I come into this room?), failing spatial perception, loss of tactile abilities (i.e. dropsies) and tracking effective human communication (i.e. my partner speaks to me in English and I tend to hear her in dumbass).
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My goals:
1. Get over/around/under/past some “brick walls” with my family tree (genealogy).
2. Learn to play a few tunes on me SSP’s (Scottish small pipes).
3. Increase the amount I exercise each week.
4. Try to get on top of this wretched REM-SBD -
Can anyone recommend some pertinent literature that would allow a DOPE (amine addict, LOL) like me to catch up on what appears to be a recent pharmacotherapeutic treatment for PwP? I live in NZ and my neurologist offers little info to his patients, unless yo are able to question directly. Thanks Ally.
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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!
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Dear Mary Beth
Your parents faced the very same situation as my wife and I currently face. With three dependent boys to raise and my wife choosing to be a stay-at-home mum (in order to home school) my wife has had to take up the working mantle and I found myself less & less able to conduct my practice after the second year — I’ve explained why below.
PD is a thief that steals or independence, aye?
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Hey Jeff — your summary of what happened for you as you chose to retire made a lot of sense to me. Wish I could say the same about mine. Hey, did you ever get strange looks from peeps that don’t understand some of the debilitating effects of PD? When I told my cohorts in psychology I was planning to retire due to what I was experiencing (mostly non-motor symptoms) they immediately tried talking me out of it! In nearly every instance, they used poor financials as a main reasoning for continued employment. Even my GP supported the notion. I can understand why they might place import onto finances, as I understood their argument.
Now that I have elected to fully retire (I left my practice in late Nov 2022) I feel much more certain of my decision, even though we’re living off the smell of an oily rag. It has placed much more pressure on my spouse, which bothers me more than anything else. So far, we’ve managed to survive, but recent massive inflation and our post-COVID economy has prompted her to work six days a week just to cover our bills. I feel whakama (ashamed) asking my spouse to do this.
Was financial benefits everyone’s deciding factor for retirement?
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Thanks for the reference on the DBS review, Elie! Great read.
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Your experiences sound a lot like mine, Robert. Except I stopped exercising in 2002 due to a change in my career, I became more sedentary, “flying a mahogany bomber” (i.e. became a desk jockey). My spouse hates riding bikes, but we use our treadmill regularly.
It’s taken me years to “be OK with this change” like you are. But I really am now… OK with it, that is.
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You sound like you’ve licked the worst symptoms, Manuel! Well done, matey! I think ou will never regret listening to your clever GP.
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I can totally relate, Jo. I had to stop working (retire) to deal with my RBD-related symptomology. It seems to affect much of my abilities to “do life”. I wish I could get on top of it, but most things I’ve tried (magnesium, melatonin, Sinemet timing, Vit. B 1) haven’t helped me much.
But I shan’t give in. I’ll beat this somehow…
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Hey Barbara F… thanks for your informative forum post. My RBD journey has prompted acting out behaviors like thrashing my limbs about, resembling a carp on a hot sidewalk, shouting out, punching, kicking, and rolling violently out of my bed.
I’ve been lucky not to injure myself, but my spouse has run for the hills at bedtime.
You mention the need for napping. I too need naps daily. At around 3:00pm, I start to seriously flag, and soon enough I’m on our couch snoozing away for no less than one hour, more often 90 mins.
GP’s don’t prescribe Trazodone in NZ, so Melatonin is my only option — unless I want to start taking Domperidone (10 mg) before bed nightly. Has anyone out there tried this sleep aid? I never heard of it until my Neuro suggested it a week ago.
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Hey Sharon… thanks for sharing your experiences with us. How did you decide to start visiting this particular practitioner? Did they mention whether their treatment involved the BIG programme to you? I very curious about the “cross over” exercises they suggest. Left foot, right hand, then switch. Eye movement exercises. Does your treatment regime address iRBD (REM sleep disorder issues)?  Just curious….