Severe Pain and Anxiety Relief Fund

This fundraiser is to help my friend find much-needed relief during an especially painful, distressing and uncertain time in his life.

At the moment, Johnny is experiencing enormous physical pain and severe anxiety.

Funds will help him access a number of medical treatments to alleviate some of his physical pain and mental duress — treatments normally financially inaccessible to him. Another goal is to provide him with some items of comfort, such as a mattress and pillows designed specifically for people with severe back pain.

Here’s a bit of WHAT’S HAPPENING:

Johnny has chronic pain in his neck, back and legs that has recently, particularly in the last two months, gotten a whole lot worse.

The pain is caused by a number of chronic conditions: spinal stenosis, degenerative disc disease, sciatica, osteoarthritis, and scoliosis.

That is pretty much a “perfect storm” for overwhelming pain, Johnny’s been told by medical professionals and discovered in his own research. He is on a waiting list to have an assessment with a surgeon at the Kingston Orthopedic and Pain Institute in November. (He was referred to the clinic in November 2021.) Presumably the waiting time is so long due to the pandemic, or possibly because of the lack of resources and support many of us are seeing in medical settings.

In 1989, he had major corrective surgery for scoliosis, with Herrington rods fused to his spine. Those rods wore down over time and broke in several places. In 2014, sections of hardware were removed during laminectomy surgery, needed to relieve severe sciatic pain.

That surgery was successful in alleviating the pain in his legs, and he walked pretty much pain-free for about 9 months. Then the sciatica returned, and he needed to use a cane again when walking. In 2015 new imaging was taken and it emerged that he had degenerative disc disease and spinal stenosis. From then until now, Johnny’s experienced a sort of low-grade, constant pain in his neck, back, and legs. Although the pain could sometimes be severe, he was able to function and to walk, using a cane. Until now.

A very recent CT scan came back with this highlighted result: “Severe narrowing of the spinal canal at the L3 – L4 level.”

There was also further deterioration in other areas of the spine. Bone spurs were also mentioned. He has a follow-up physical examination with his family doctor on May 19th.

This pain and uncertainty have been traumatic for my friend who can walk about 15-25 feet, with his cane, before he has to stop, crouch and rest, due to the pain and weakness in his legs, problems with balance, and pain in his lower back. He has a walker now, and will begin using that for stability, as his legs feel weaker and more pained by the day. Not knowing if this pain and weakness is permanent — and without seeing a surgeon or pain specialist, without a proper treatment plan in place — Johnny is understandably concerned and anxious. He is frightened about what’s next. That fear, alongside the constant pain, are taking a heavy toll on his mental health.

My friend also has anxiety disorder. The alarming new pain he’s experiencing in his back and legs has made his disorder worse — amplified the anxiety, leaving him mostly housebound.

Because of all of this, he is experiencing severe anxiety attacks and agoraphobia — namely, feelings of unreality when he leaves his home, and generally feeling terrified and mentally exhausted. He has been prescribed Ativan for “situational stress,” and it helps him to a degree, but it’s a low dosage and a short-term measure.

Johnny spent most of March and April convalescing at his parents’ home, sleeping on a twin bed in their basement, while trying to rest his body and mind as much as possible, and come to terms with all that’s happening — and, also, to not be alone and isolated during a very, very hard time. His loving and supportive parents (who are 76 and 79), however, have their own health issues that need tending to, so this was a temporary measure. He needs to be able to feel safe in his own apartment, and to live as independently as possible; he can no longer burden his family. They are, frankly, in too much pain of their own to be helping and providing care for their son. Their health and well-being are as important to Johnny as his own.

My friend’s extreme pain and severe anxiety have limited his ability to function and seriously diminished his quality of life.

He’s expressed these concerns, and people have said they would like to help him. He is profoundly grateful for their care.

Thus this fundraiser.

OHIP has covered: a visit from a personal support worker once or twice a week to help Johnny with bathing/showering. Other helpful supports covered by OHIP are temporary, such as several visits from a physiotherapist and an occupational therapist, who will provide assessments and guidance. These supports are good and welcome. But they are also temporary.

Many other treatments and supports that might help are not OHIP-covered and are, to Johnny (a part-time journalist and author who receives monthly disability supports), cost-prohibitive. Here are some of those supports. Hopefully it will be possible to get them. Others may surface along the way, as happens in fluid and uncertain medical situations.

WHAT MIGHT HELP:

— A good mattress designed for people with chronic back pain

— Memory contour pillows for head and legs

— Desensitization/Exposure therapy in outdoor spaces with a trained medical professional or personal support worker

— Steady, continuous talk and CBT therapy with a psychologist (or similar) who specializes in anxiety disorders and perhaps chronic pain as well

— Therapeutic Massage Therapy

— Chiropractic treatment

— Acupuncture

— Hypnotherapy for anxiety disorder / chronic pain

— A scented diffuser to help with sleep and nighttime anxiety

— Anything else that will help make his apartment a more calming environment (the idea is to anxiety-proof it as much as possible)

Other assistance:

— Purchasing everyday items that help alleviate pain (Extra Strength Tylenol, Advil, Rub A535, heat wraps, etc; these costs quickly add up)

— Grocery delivery

— Homecare (possibly more visits by a Personal Support Worker)

— Tidying up the apartment

— Meal preparation / delivery

It is realistic, too, that Johnny may have to move. His apartment is nice and comfortable, and he likes that it has lots of things that he needs, including a dishwasher, and a stackable washer and dryer. Not being able to sit out on a porch or a deck or in some green space is distressing, though. His apartment door opens up to a sidewalk and a very busy, noisy, and sometimes dangerous street. His bedroom window looks up to the back parking lot. And the washroom in his apartment is not well-suited for someone with Johnny’s disabilities and special needs, as it has a stand-up shower stall and is cramped small space overall. The possibility of having to move, and all that entails — finding a suitable and affordable place in a convenient location, with a little green space — is adding to his stress levels. But even a little bit of green space, where he could safely and comfortably sit outside and read, would be a great comfort.

Trying to manage all of this, my friend is feeling stressed and overwhelmed. I know all that has happened in the last two months has been very hard on him, physically and mentally, so I am glad to help him out in this way — to take on something that would be far too emotionally taxing for him given his medical conditions and current circumstances.

I also know he is reluctant and uncomfortable asking for help. But I believe he will benefit greatly from access to much-needed treatments and supports, and they will provide him a very welcome measure of comfort and relief.

Anything you can give, in any amount, will go a long way towards helping my friend access these vital and essential supports, and be considered a very kind and generous gift toward pain relief, wellness, and well-being. If you are able, please donate.

If you are not able, please consider sharing this fundraiser, and/or sending Johnny messages of support and love and care.

Thank you.