Seriously. I'm not doing this for any reason but to liberate myself a little more from the grasp of PSP.
Over the winter (it was a bad one here in MN), I noticed a gentleman going for walks using a walker in the neighborhood with some frequency. I use a walker all the time when I'm outside now, but knew better than to try that on our snowy/icy streets.
But I realized the other day that I can go out for a walk now, tho probably brief because I'm not physically very strong, and prone to fainting spells. However, I could do it more safely if I wore a helmet. Why not? Even just to the mailbox and back. I feel this itch to get out.
Also, when we moved to this property last October to get into one level living, my only hesitation was the size of the lot; in other words, way too much for me to manage. But I have a short list or people who offered, and I can count on, to cut the grass, fertilize it, etc.
My lot also has many raised flower beds that I'm just itching to get my hands in. Wearing a helmet and using a chair, I can finally connect again with one of my simple pleasures; gardening. I've missed it so much. My former property had several gardens but were on the ground, which I just wouldn't risk.
And, yes, on my 'fainty' days, or 'off-balance' days, sure couldn't hurt to wear a helmet inside the house either.
No worries, my cousin Bob who's been such a big help with transportation since late March made me promise not to touch a raised garden til he gets back from his annual pilgramage to Sweden in a few weeks. He loves doing this type of thing and wants to do it with me, and make sure I'm safe.
I just love this property/area I'm in. A few blocks from a nature center. No street lights. Very quiet. Even as I sit on my bed typing this with the windows open, I hear ducks, geese, a variety of birds and a couple of antagonized squirrels Simple pleasures.
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JudyJ
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If it's of any use .... my step-dad had a helmet and it was worth excellent. It was one made for him at the hospital (UK), not the prettiest of things but served it's purpose and saved his head!
Roy did however struggle with both a 'walker' and walking sticks - he was advised not to use them by his physio and occupational therapists after several falls. It was because his brain couldn't concentrate on holding/moving the walkers and moving his legs at the same time (he was quite far advanced in his PSP) - having said that there is a walker on the market that will not tip over if you fall, I think it is battery operated too - if I remember correctly it is American - sorry I can remember what it is called or the firm who makes it.
Thanks for you reply, Tree Hugger x; if validates I'm on the right track.
I too have heard of walkers available here in the US that are weighted either in the front or back; I have more of an issue of falling backwards, tho I do fall forwards, or should I say 'sideways', when I have that 'invisible magnet' feeling unseen, but in front of me, that will pull me forward and down to one side of the other.
Tho I'm in the earlier stages of PSP, and at the same time over these past months that trying to figure out what 'stage' I'm at is almost a waste of time, I do feel my mobility lessening.
So, while I have some grit and an 'itch' to get outdoors yet, I'm going for it. And as for safety, after finally giving my modesty a rest, I've decided wearing one in the house on bad days when I''m up and around, is simply smart. It will also give my girls a little more ease of mind as well.
My husband talks of a strong 'magnetic pull' that pulls him forward that causes him to go off balance, and he has found the Kaye walker particularly useful. It was under patent, made in America and made of aluminium hence was pretty pricey to purchase so we were able to hire one beforehand to try (Through the Independent Living Centre of Western Australia). There is now a generic version - made in China which has made the product more affordable, and different versions that parts can be added (?). The model we had was a god send to keeping John moving and being independent. He was able to use a regular taxi for appointments and go to the shops without someone tagging along. It also had a couple of quirky extras that were of benefit. The click, click sound of the brake rachet mechanism gave John prompts to step, step and step...and the bar that touched his bottom and hips and gave him an additional prompt to move - It touched his body - he took one step, it touched he took one step etc... It was a piece of equipment that was not readily excepted by John's physio, OT and neurologist to try. Each was very relunctant as they had not heard it being of anyone with PSP before. but they have now found out that it is a condition that somethings may works for some, maybe not but is certainly worth a go....
Huh. Thanks for your reply and this information. Since I was diagnosed last Aug., my falls are split in mainly 2 categories, and pretty even; the backwards fall with or without a preceding whoosh head rush, or the magnet pulling me forward in a direction I don't intend til I fall to that side. I will for sure look into that. Might turn out I need different adaptive equipment for days my symptoms vary & are strong.
And as far as the helmet goes - If it works use it!
And I am envious that you have a garden to wear it in.. We have water restrictions here so flower beds and green growing gardens are pretty much unheard of here. People are now even putting down plastic lawn to give the illlusion of greenery.
I am admittedly not well-travelled at least abroad; lucky enough to hit the Bahamas a few times earlier in life.
I'm an avid reader of current events, but due to my vision, read snippets to get the gist. Seems quite often I read (or hear) about Australian wildfires, droughts, or floods. Which is it..?? Goes the same for our country to; pick a section and the weather can be a direct opposite of the next.
Gardening has always been a form of therapy for me so I'm eager for the opportunity to reconnect with the earth and nature, even if it's in a modified form. So be it.
Uh...one more thing...are you serious about putting down plastic lawn to create the illusion of greenery...? I've never heard of such a thing. Your water shortage-drought?-must be pretty severe, for sure.
Yes, the plastic lawn is legitimate - "Synthetic turf" at about $50 per square metre. I live in Perth, Western Australia (City of 1.8 million) and my home is about ten km from the centre. Every time an old home is demolished and the block sub-divided 3 homes go up instead with very little room outside. The new homes have a very little garden with a few plants with no trees. I'ts not something I like so I instead have decided to stick to my old home. I've cut away the lawn (which I loved to walk on but became too tired to mow), put down lots of pebble,old bricks and mulch instead so I can still have my trees and space. (and yes - it is still a work in progress...) Regards, Alana - Western Australia
Way to go Judy!!!! Excellent idea with the helmet, wish I'd have thought of that or medical team had for my mum, a few years back that could have saved countless visits to the hospital for head injuries and stitches. Hope you get back in the garden and be safe and get back to doing what you enjoy.
Thanks Jo-Jo. I have to admit it, tho I'm doing so sheepishly, I didn't realize until over these long winter months what a ego I had. Shame on me. Really, I didn't think I took myself that seriously until PSP straightened me out.
For example, a couple of Neuro visits ago, he was adamant I start and consistently use my walker whenever out in public, due to decreasing trunkal/extremity stability. I thought "Ha! I will not."
I have used a cane for a long time now, but noticed decreased stability using it when out in the world. Yet me ego was right there, getting myself in my own way. I forgot how it came about, but one day I simply thru my walker in the vehicle of my ride and always use it now when out. And it makes my mobility so much more manageable.
There are other examples I have of my own resistance to help myself via adaptive equipment or sometimes just plain old common sense, but I think you get my point.
Part of my internal struggle is I'm only 54. 54 54 54. 54 is YOUNG. I'm not hung-up with this crazy, counter-productive, youth driven culture in the States; in fact, I'm directly opposed to all if represents and harm it causes.
It's just that my spirit still feels young. And the more limitations, meds, adaptive equipment that's thrown at me, including the loss of my ability to drive, the more I feel this internal resistance, no matter how unwell I feel and/or know others are right, I want to yell "BACK OFF EVERYBODY, I'M ONLY 54!"
So over these long winter months during which I've had much time to ponder all of this, I decided, at least for myself, it's a matter of acceptance. And underneath all the doc visits and agreeing to do this, that, and everything else, and I have NO reason to doubt my DOC whatsoever, there was a part of me way down deep that wanted nothing of this.
But I also realized I was making it much harder on myself by being stubborn and resisting doing what I was told. My Mother said I've been like this since a very small child. Very independent and resilient. At a very young age, and no matter how many falls I incurred with plenty of bumps and bruises, insisted on not holding her hand walking up or down a flight of steps.
This personality characteristic has mainly served me well, but sometimes really negatively affected me. I've decided this is one of those times not embracing PSP is negatively affecting me, but particularly my kids, when I take risks I shouldn't, causing them excess worry.
So, I'm going to surrender to it. For me, that does NOT mean giving up, lose faith, or sit and wait to pass on. Surrendering to me means embracing that I am the same person I was who happens to have this awful disease and will not let it define me or allow others to define me by it.
Or simply put - full acceptance - it's taken me long enough.
What this means is acting on these creative, adaptive impulses, so I can enjoy the time to the fullest while I'm in the early stages.
So what if I have 'helmet hair'???? I will be out in the world, more active again, but within my limitations, doing what I enjoy doing.
Gosh you so have the right mind frame to get you through now. My mum was only 60 when diagnosed but was looking after my dad after he had an accident and sustained a permanent brain injury. He accident and her diagnosis all came about within a few months of each other. Even then mum was having the odd "clumsy" trip. I think the stress of taking care of my dad really progressed her illness, within 2 years they were BOTH falling in and out of the house, so I had to make the decision to have Dad go into residential care for both of their safety. I thought this would also give my mum time to still enjoy her life before the PSP took more of her independence.
Mum never has accepted the emotional and physical changes PSP brings about, not at any stage has she just accepted that some things she just can't manage by herself anymore. I understand her frustrations but as her only daughter I would get frustrated by her lack of care to her own person. Doing things within the home that would obviously call a fall....rather than waiting for a carer or myself would tackle. Needless to say I have spent many hours in our A&E department. Because of the falls mum also had to go into a residential care home the day before her 63rd Birthday. She was the youngest resident by also 20 years and it broke my heart.
But still she kept up with the falls rather than ringing the bell for assistance. It's only now that she can't weight bare that the fall have almost stopped. People may think she's stubborn, highly independent, fearless, prideful, hell yes she's all those things but she's never ACCEPTED her condition.
As her daughter it has been very upsetting seeing her so battered, bruised and yet so bloody determined to battle on. As awful as it sounds it was almost a relief when she couldn't walk anymore as I knew she wouldn't fall. So my hat goes off to you my love for having now that acceptance, it can only help you emotionally and physically and of course will not have you're daughters jumping with dread every time the phone rings.
Wow. Thanks for sharing this poignant post about your Mum, and Dad; you've sure had your hands full. I do understand on a deeper level how and why you would feel relief when she couldn't walk anymore; believe you used the words 'almost a relief'; it is not an awful thing to feel; set yourself free.
My Lovelies, my daughters, have and always will be my main concern. To watch their faces tense up or appear fearful when I'm up and around, attempting things I probably shouldn't, or on my feet too long, went a long way to make me accept my circumstances. To surrender and adapt.
Their anxiety level, particularly my oldest daughter's, was palpable and no amount of reassuring her helped because my imbalance/falls/fainting episodes continue. My intentions were good, but I was living an untruth.
And, tho it's been about 9 months since I was diagnosed, it's taken about 8 of them to stop my inner turmoil and really get in tune with how this is affecting them on a daily basis. I'm not proud of that.
My youngest daughter comes home from college on Monday. I'm so proud of her! But I know a part of her is probably dreading dealing with my PSP. I don't blame her. But before she went back for the second semester in January, I was still in the "I don't need the help they say I do." mode, which resulted in unnecessary chaos.
And like your Mum, diagnosed at 60 is so young! How hard that must be. I know it's hard on my girls. So, I'm committed to adapting, adapting, adapting, so they feel more secure because I'm using the appropriate tools to stay safe and feel better.
Next on my list of things to do, within a week, is getting a home alert system on board. I've researched it and got it down to one company. I can wear the medical alert necklace inside, outside, or even as a passenger in a car going to an event, as long as I'm within cell tower distance. And living in a large metropolitan area, that will be no problem.
After stewing AKA fighting my own situation evolving into eventual acceptance, having the medical alert system by itself will help the 3 of us as well as those who care about me feel a lot better.
I guess if there is an upside to being diagnosed at 54, I realized during my stewing months, that, heck, I could live several more years with PSP with decent cognition, and all this stewing going forward would do me in quicker Gallows humor; have to have it; coping mechanism.
Love,
Judy
At the moment we are trialling 24hour care for my husband as he needs watching at all times because of his falls.
It is really good cos it has improved his safety and also allows me a certain amount of freedom, the downside is having carers in your house at all times which sometimes is a struggle but the pros out way the cons I think so hopefully CHC will agree to it being an ongoing arrangement.
This has been made possible by my wonderful advanced nurse practitioner from the Sue Ryder hospice and a lot of pushing and shoving from myself and my lovely daughter.
Well done Judy, So glad you are enjoying the garden PLEASE wait for cousin Bob he sounds the kind of cousin we should all have! This swopping of ideas and solutions is such a great idea. For anyone who feels at all isolated it must be a life saver and your guts and humour put a smile on my face.
My wife June used a kick boxing helmet after several backward falls that resulted in 7 to 10 stitches in her head. With the helmet which she used for the last 3 years before her death 2 weeks ago work extremely well you do not have to have one specially fitted just go to a sports store that sells kick boxing stuff and they cost about $30.00 in Canada.
I would recommend a helmet to every person that has PSP it does prevent serious problems and trips to the emergency ward for repairs to the head.
Very helpful information; thank you for this information. My oldest daughter, Katy, has a variety of special needs; she's 21 now. But because she' more high functioning than not, in higher education she was always allowed to work with the lower functioning kids and was excellent at it. She also knows her adaptive equipment. When I mentioned your idea of a kick boxing helmet, her face lit up and said that'd be perfect for me, and many of the students she mentored also wore kick boxing helmets for various conditions. So, there sure is something special to be said for that type of helmet; guarantee I'll have one within a week
The most important thing I want to say to you is I am so sorry hear of your wife's passing. I will keep you in my heart and prayers.
Sincerely,
Judy
It's lovely to see a posting from you Judy! What a good idea to wear a helmet.One of our worst fears for mum were garden ones. We had to persuade her to part with the green house as she continually fell about in and around it-several times in front of our horrified eyes-it was before diagnosis so we didn't realise it would get worse and couldn't be helped.We also put in its place a raised flower bed but before the cement had even dried mum fell backwards head first and actually knocked out 3 breeze blocks! Thank goodness for the wet cement or it would have been very serious. Mum did enjoy having the raised bed and was very proud of it as she too loved gardening.We even had a walk in shape so she didn't have to reach across and could use the walls to steady herself and keep safe..I know mum wouldn't have worn a helmet so I applaud you in your resourcefulness.
It would be great if PSP association would have some cool ones in their shop, along with other gadgets that we have trouble tracking down such as valved straws etc!
Since my mind's made up on the helmet-it just makes so much sense-I was inspired to look on line at adaptive equipment at a couple of our local, large retail pharmacies.
Goodness, picked out about a dozen things w/o looking thru the majority of the pages that would help me immediately. One is so simple and would help so much with getting dressed. It's a simple stick-shaped thing that has gadgets attached to help pull your socks on, shoes on etc.
Instead, since I was diagnosed last summer, and even before then because of my arthritic/orthopedic problems, it would take me a long time to get dressed in the morning, doing all kinds of contortions, painful at that, to get dressed. Frankly, sometimes I gave up and stayed in my jams all day.
Acceptance is a powerful thing
Take good care, Fiona, and thanks for your support.
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