tag:blogger.com,1999:blog-81616811967667258422024-02-02T19:20:54.942-05:00Jughead's Baltimore Blog, Our Life With Multiple SclerosisThese are the things that make me scratch my head and say "Whaaaaaa"?awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.comBlogger663125tag:blogger.com,1999:blog-8161681196766725842.post-53970515598522880112022-11-09T03:17:00.010-05:002022-11-09T03:17:53.796-05:00Voted Today, Sidewalks Are Still An Issue <p> Went to vote today, yay democracy! Went by myself out amongst the humans, so I was 4 wheelin through the streets of Perry Hall. Not a bad trip, about 1 1/2 miles, I can do that with my eyes closed. The county put in all new curb cuts on my route to the shopping center, unfortunately I vote in the opposite direction. </p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHEl9tRNTzU-nsNCioIPOBcvWaTRiyPKerW38VI6pgOLbkqJCW25mC9MlRqEr2Zla9Pk4hH1nt-Rh-mlpITWROuiYEKg5d6nviGKlsK3dWi62YhBbbydjhtvSRRTeMXKYRAlr7TtKV9tmzkETPBPK6i7N_GQAcYuaUNS6rKMDz0IJqx58kaDRCA-pOzg/s4032/BA377BC6-2793-4C0B-9EBC-BA6714E01E50.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHEl9tRNTzU-nsNCioIPOBcvWaTRiyPKerW38VI6pgOLbkqJCW25mC9MlRqEr2Zla9Pk4hH1nt-Rh-mlpITWROuiYEKg5d6nviGKlsK3dWi62YhBbbydjhtvSRRTeMXKYRAlr7TtKV9tmzkETPBPK6i7N_GQAcYuaUNS6rKMDz0IJqx58kaDRCA-pOzg/s320/BA377BC6-2793-4C0B-9EBC-BA6714E01E50.jpeg" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p style="clear: both; text-align: center;">So this was what was waiting for me on one side of the street, not exactly wheelchair friendly. No biggie, I'll just cross the street and find a driveway I can go up. </p><p style="clear: both; text-align: center;"> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH9tQqnVyrbHzOvHdqivoeqoRpIp6ZY4n9Ymg6E3dam4J3UZnxdv7_ot4xj3YitG9lAWjLzCLppbhz1DiSEQq7b1OC8-UuyJdhoysaF9CIMuL2kG2yuRVRrLcypZR11r3qxD_reFEL32WI-Q8cFIyeTcHrqywugl9eMulTs4rj9vgznMiVBemyj39qkQ/s3264/20221108_092222.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3264" data-original-width="2448" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH9tQqnVyrbHzOvHdqivoeqoRpIp6ZY4n9Ymg6E3dam4J3UZnxdv7_ot4xj3YitG9lAWjLzCLppbhz1DiSEQq7b1OC8-UuyJdhoysaF9CIMuL2kG2yuRVRrLcypZR11r3qxD_reFEL32WI-Q8cFIyeTcHrqywugl9eMulTs4rj9vgznMiVBemyj39qkQ/s320/20221108_092222.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh_9bLFekaWHfpEYC7XcbrcZxHKevdYsMPXX4UFtibl8-3ubGyp-HE1N2DltYMjuV-UrHb74-bF-llgw3LR_7RBplMTm0-2-mfmGyCOeTtL1f_TQABOIBwNz4ZqldfnJrjsRgdu8qXXkuTP9NF_fCHMLsiuyEUcgoY9KAATnRfBHOXgqzKMtE9xADP0w/s3264/20221108_091839.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3264" data-original-width="2448" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh_9bLFekaWHfpEYC7XcbrcZxHKevdYsMPXX4UFtibl8-3ubGyp-HE1N2DltYMjuV-UrHb74-bF-llgw3LR_7RBplMTm0-2-mfmGyCOeTtL1f_TQABOIBwNz4ZqldfnJrjsRgdu8qXXkuTP9NF_fCHMLsiuyEUcgoY9KAATnRfBHOXgqzKMtE9xADP0w/s320/20221108_091839.jpg" width="240" /></a></div><br /><div style="text-align: left;"> Couldn't go down the front of the school, no cuts. It's 2022, how can a public school not have accessible sidewalks? Am I the only person who needs them? Am I the only person that goes out? Damn discouraging is what it is. </div><p></p><p style="clear: both; text-align: center;"><br /></p><p style="text-align: left;"><br /></p><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><p><br /></p>awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com0tag:blogger.com,1999:blog-8161681196766725842.post-88664266159465973652022-06-24T02:51:00.002-04:002022-06-24T02:57:31.109-04:00The Bathroom Will Be The Death of Me<p> <span> What is the best way to get in and out of the shower? How about on and off of the toilet? I cannot believe I need to ask it, but here we are. I honestly don't know the answers anymore, PT and OT have been to the house, no answers from them. Shower seat and toilet seat are both about 6" lower than my ride, doesn't sound like much, Everest to me. Anything? Any tricks I haven't thought of? Actually considering a stoma to take care of the bathroom part, already have the suprapubic catheter for part of it, why not the boxed set. Am I to be destined to sponge baths for eternity, live the rest of my life in </span>seclusion? </p><p><span> PT and OT don't seem to understand hemiplegia? They tell me, grab here, push this foot, scoot over, they don't realize my scooting days have passed me by. I can't be the only person they see with these issues? I'm being told Medicare won't pay for an overhead lift system, a Hoyer lift won't get the job done, not without major restorations to our home. Just got a quote for the overhead system, $20,000, say what? That's not going to happen, retired since 1996, not a lot of disposable income at our casa currently. If you see me out I'll be the guy in the corner looking miserable and smelling badly, wait, I forgot, I don't go out anymore. </span><br /></p><div class="LYkI7" style="-webkit-tap-highlight-color: transparent; display: flex; flex-direction: row; flex: 0 0 auto; padding: 0px 10px;"><div class="vAOvBb" style="-webkit-tap-highlight-color: transparent; align-items: center; display: flex; flex-direction: row; margin: auto 6px auto 16px;"><span aria-label="Changes saved" class="DPvwYc ExSgfc XMCYre" style="-webkit-font-smoothing: antialiased; -webkit-tap-highlight-color: transparent; color: #9e9e9e; cursor: default; direction: ltr; display: block; font-family: "Material Icons Extended"; font-feature-settings: "liga"; font-size: 24px; line-height: 1; overflow-wrap: normal; padding-right: 16px; text-rendering: optimizelegibility;" title="Changes saved"><br /></span></div></div>awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com0tag:blogger.com,1999:blog-8161681196766725842.post-64405482559515916762022-06-12T01:44:00.001-04:002022-06-12T01:44:49.770-04:00Set Myself on Fire, Transfer Trouble, Farmers Life For Me<span> So I'm not digging some of the things going on in my world, for starters on March 26th I set myself on fire. Heating something up in the microwave from Wendy's in the bag I didn't realize it was in a foil lined wrapper. The bag caught fire, I took it out and promptly dropped it on my footrest, instant bbq!</span><div><div>I can't control my right leg, so I couldn't get it out of the way. It just burned! 2nd degree burns, multiple trips to the wound care clinic, I still have a pad on it, without it every time I have a cramp it rubs up against the pad and the new shin rubs off, fun. </div><div><br /></div></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFfZN5E_q4eBhSxpIRtOaMAuhsvb5Dqipi2HZ2L-QfUjCT8xzj8e-hECyj8sEPOgXcooCTec4yIi18wvuvIRUomWGNiRNGx2YpQX-ooqxSG4SJNaC3ywbIVnj-OJU-WAaNmBSfAXe_ItgZnkrydJun5KG6il5iDVN0-Z7b8csBFIXWk8zOHJ11p-H1Ng/s701/burn.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="701" data-original-width="526" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFfZN5E_q4eBhSxpIRtOaMAuhsvb5Dqipi2HZ2L-QfUjCT8xzj8e-hECyj8sEPOgXcooCTec4yIi18wvuvIRUomWGNiRNGx2YpQX-ooqxSG4SJNaC3ywbIVnj-OJU-WAaNmBSfAXe_ItgZnkrydJun5KG6il5iDVN0-Z7b8csBFIXWk8zOHJ11p-H1Ng/s320/burn.jpg" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div> <span> My days of transferring have just about come to an end. the shower and the toilet have become my arch enemies. The toilet I can still do, providing my body gives me enough warning to get there, but the shower is another story. I sit there and stare, I only need to lift up a few inches, but it may as well be a few feet, ain't happening. We are looking into a ceiling lift, what a procedure it is for that. </span>Trying to figure out if Medicare pays for any of it, so far no straight answers <span><br /><br /></span><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEQW1Mr1CHnxQGYM9X9nM0jwyUsPvCPPLrOeK_gBxABJn0jYl-gLMdiquQzKeB-38rQibtXXAEV_PomWtDNBlQ4bPjwyht5CotxWSSCj42jjAdUZQuXHhmVkyo1nvVIXhHg6XSE4Qa8HAZJVVSlQEAjqBConqWzIXPgmOG10WoB0vWDMZkTxqlIsFeOA/s853/277327803_10159607293216233_7162842470098090377_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="853" data-original-width="526" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEQW1Mr1CHnxQGYM9X9nM0jwyUsPvCPPLrOeK_gBxABJn0jYl-gLMdiquQzKeB-38rQibtXXAEV_PomWtDNBlQ4bPjwyht5CotxWSSCj42jjAdUZQuXHhmVkyo1nvVIXhHg6XSE4Qa8HAZJVVSlQEAjqBConqWzIXPgmOG10WoB0vWDMZkTxqlIsFeOA/s320/277327803_10159607293216233_7162842470098090377_n.jpg" width="197" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span> Something I am digging are my new garden boxes. The men from church put them together, even filled them for me. I now how 2 4'x8' raised boxes, 5 potato bags, and 5 tomato plants in self watering tubs. We just harvested swiss chard, I can't wait for the rest!</span></div><div class="separator" style="clear: both; text-align: left;"><span><br /></span></div><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix1OF5ord0lTlz7IIT5ecAhWNzxTXFnK8qvBIOO0quKEJ9T2E9A64IwjxztqaybwOnjS9FOo76r-8hfBWbZE10GuyXd350o5REVZWDlsJ3cv4flItxyZxrIxVTdgg8VD9JoEkpgWm3sxcRBkrJ1sQ36UoCm3hBwodQmwHL4HDCo4UEvH5WnsGoL6-TFQ/s2048/285907973_10159738122901233_2184550841368055722_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix1OF5ord0lTlz7IIT5ecAhWNzxTXFnK8qvBIOO0quKEJ9T2E9A64IwjxztqaybwOnjS9FOo76r-8hfBWbZE10GuyXd350o5REVZWDlsJ3cv4flItxyZxrIxVTdgg8VD9JoEkpgWm3sxcRBkrJ1sQ36UoCm3hBwodQmwHL4HDCo4UEvH5WnsGoL6-TFQ/s320/285907973_10159738122901233_2184550841368055722_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg118SRnQXfuN-Z5Ks_vmJOjpV4uXdSQ2Bx4ZZ1KOtM51ANUrDZgiL2Db7tUIshgqeSY0NCdZRPL0NBHjCA7bzWRO4CUi12Q2nmuPlzH_taxLhlXYKeyRwzREnUcLnlNXWyC1xiuHjqNE57AQosIbQqXMCvW87Etc-s7y5myVoScRSflldMlgEEx5ZOA/s2048/285931248_10159738122601233_4882881859548798650_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg118SRnQXfuN-Z5Ks_vmJOjpV4uXdSQ2Bx4ZZ1KOtM51ANUrDZgiL2Db7tUIshgqeSY0NCdZRPL0NBHjCA7bzWRO4CUi12Q2nmuPlzH_taxLhlXYKeyRwzREnUcLnlNXWyC1xiuHjqNE57AQosIbQqXMCvW87Etc-s7y5myVoScRSflldMlgEEx5ZOA/s320/285931248_10159738122601233_4882881859548798650_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEike-CqlpBdePpqiwHUINp7XeuUhJum2_B--Z5LJ7ClY2AxWLsa9OAZlX1LSHXpMy9IZoTn8AU-CyyMbHENJzjgAQAWPr81WVHPWuENSF1Z90Wssks0tskk4-mzFPoDMcThurAr5WcT44RQmul77AMs2vlU_Uxz1987nHqjjIsD5jfOG6leD5zAJYHJmg/s2048/286172743_10159738123266233_587860604890514565_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEike-CqlpBdePpqiwHUINp7XeuUhJum2_B--Z5LJ7ClY2AxWLsa9OAZlX1LSHXpMy9IZoTn8AU-CyyMbHENJzjgAQAWPr81WVHPWuENSF1Z90Wssks0tskk4-mzFPoDMcThurAr5WcT44RQmul77AMs2vlU_Uxz1987nHqjjIsD5jfOG6leD5zAJYHJmg/s320/286172743_10159738123266233_587860604890514565_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR_Xr1iFje6etPqEvTxbxzOLK-7VR5tTpn8Mwrb73meGTHeXsVf2fVdgXgkK_E6rcE9ZExWZV0P1E7ArFv6SUSEMpynXU1RsBl95F-oGelmjpjbr6RpB5L9pFi5RMNz0n0DjUILiw9U73MKJOrAKJK7G2LtXigv7pB3Y4zZYSZJ9xKUI2yXZDiPak6lw/s2048/286196847_10159738123101233_1061915650606993296_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR_Xr1iFje6etPqEvTxbxzOLK-7VR5tTpn8Mwrb73meGTHeXsVf2fVdgXgkK_E6rcE9ZExWZV0P1E7ArFv6SUSEMpynXU1RsBl95F-oGelmjpjbr6RpB5L9pFi5RMNz0n0DjUILiw9U73MKJOrAKJK7G2LtXigv7pB3Y4zZYSZJ9xKUI2yXZDiPak6lw/s320/286196847_10159738123101233_1061915650606993296_n.jpg" width="240" /></a></div><br /><span><br /></span></div></div>awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com0tag:blogger.com,1999:blog-8161681196766725842.post-85203123572367708582021-06-24T14:41:00.000-04:002021-06-24T14:41:01.990-04:00Sidewalks Are Not My Friend<p> <span> Have you ever really taken a good look at the sidewalks? I never really paid that much attention to them, at least not until I was in a wheelchair. If something was in my way, whether it be a broken up section, an uneven transition between pads, or a lack of curb cuts at intersections, it didn't catch my eye. It does now.<br /><br /><br /><span> </span></span></p><div class="separator" style="clear: both; text-align: center;"><span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp2zBk4uY5x5bz7FmE9Be3W-Cj1hZd3LnuSVb0ioCrvm5rdsxBk1v9RjrOUffzMH00dVUEcHSbeJRZbWJmgBauBzwx5ZycVmDv1mQNXwupzgnmnmsxRAlf1X0U0ktb7z-hKjlgXwfr-0jF/s2048/IMG_0425.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp2zBk4uY5x5bz7FmE9Be3W-Cj1hZd3LnuSVb0ioCrvm5rdsxBk1v9RjrOUffzMH00dVUEcHSbeJRZbWJmgBauBzwx5ZycVmDv1mQNXwupzgnmnmsxRAlf1X0U0ktb7z-hKjlgXwfr-0jF/s320/IMG_0425.JPG" /><br /><br /><br /></a><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibiLnn27LJxMlBdS3WZS8Kx-cbQBZsF9ABeJ0UVkDb4NKEK0dTsI8N0m61yzZTT-15WRrd1COAo8yjeeKumYlKypix08iZGBEljbZa6DHs-D-faMml7lEaxACdmCXKbn4q3o6cC1tPdKsa/s2048/IMG_0221.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibiLnn27LJxMlBdS3WZS8Kx-cbQBZsF9ABeJ0UVkDb4NKEK0dTsI8N0m61yzZTT-15WRrd1COAo8yjeeKumYlKypix08iZGBEljbZa6DHs-D-faMml7lEaxACdmCXKbn4q3o6cC1tPdKsa/s320/IMG_0221.JPG" /></a></div><br /></span></div><div class="separator" style="clear: both; text-align: center;"><div style="margin-left: 1em; margin-right: 1em; text-align: left;"><span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZGhS0x3ypvI32U08aVHO3IWKyvNu9DX5k_CLlkfc9FXs5xEh-N0k2Doig37p0gnGNrHkiRoJ52SWzFsnSTOyhY9PWYANXe-YyTMLfB3h6gEJjZwm4I9hOKt4l58q3dHa5G2yGsvq_qXe1/s2048/IMG_0190.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br /></a></span></div><div style="margin-left: 1em; margin-right: 1em; text-align: left;"><span>I am in a battle right now with Baltimore County. I am trying to convince them that trying to transverse the sidewalks is a dangerous proposition, so far I haven't had any luck. I live in a residential neighborhood with average traffic flow. Because the sidewalks are in such bad shape I tend to travel in the roadway, taking my time and being aware of my circumstances. Two things I am looking for, a curb cut at the middle school, at the back of the parking lot, and two curb cuts that are at the end of streets that dead end into another road. The county school board has told me that there is no money in the budget for the curb cut at the middle school. Furthermore they have stated that it would not be safe for me to travel through the parking lot because there are no sidewalks to travel on. I find it ironic that this is the same parking lot that the children walk in on their way to school. The county also told me that they are unable to put sidewalk cuts at non-four-way intersections.<br /><br /> <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0jE6JCb4dXyCZItQjCNTI5FzwfqxIjsDVY-Iho3SAhBKzX6IAkrc3cG5JmDiXfDbMszPWUT7spJqcc2J1OOAtEKIZ819ky1HrK1YCitn1f9F0VAX5o5xpgKv9Ey2PW86XgHUKf0T0tXAB/s2048/IMG_0190.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0jE6JCb4dXyCZItQjCNTI5FzwfqxIjsDVY-Iho3SAhBKzX6IAkrc3cG5JmDiXfDbMszPWUT7spJqcc2J1OOAtEKIZ819ky1HrK1YCitn1f9F0VAX5o5xpgKv9Ey2PW86XgHUKf0T0tXAB/s320/IMG_0190.JPG" /></a></div></span></div></div><span><span> </span><p><span><span> </span>The county put in pretty new cuts at four-way stop signs in my neighborhood, this is what you encounter not 50 feet down from one of those new intersection cuts. I have asked my County Councilman on a few occasions to come meet me and take a walk through the neighborhood so he can see the obstacles that stand in my way. So far he hasn't accepted my invitation.<br /></span></p><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /></span><p></p>awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com0tag:blogger.com,1999:blog-8161681196766725842.post-60273249196490197292021-06-20T13:01:00.003-04:002021-06-29T00:03:56.381-04:00Vans Coming Out My Ears<span> It was about 10 years ago that I first started looking for a handicap accessible van. I received a break, something I'm not used to. A guy that was hired after I left work had an accessible van that he couldn't get rid of, he offered it to me for free! He had tried to donated to different organizations but they wouldn't take it because of its age. The van is a 1987 Chevy full-size cargo van, it has a Ricon rear entry lift. When I first received it I was still able to transfer into the drivers seat and drive the van myself. As the years went by it got harder and harder to transfer into the drivers seat, until about three years ago when I had to stop attempting it. I still had to transfer from the wheelchair to the seat in the van because the roof isn't high enough for me to stay in my wheelchair. I am now to the point that transferring to a different seat has become too difficult, in fact in the last few weeks the fire department has had to come twice to get me out of the van. It is really a shame, the wife and I really like this van, however the transfer has become a dealbreaker.</span><div><span><br /></span></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiONVvGHuXIFTMmLM3ymZjH9j73pStCJFsxT8CcTo0I8H7C1jQNPszEDdvYL3HS6ZfViaXHJ8bb4EAXrqSuPETQFTpE96FFUcpzgs0BVnUrulanPNbTbIMHfmVwNeHuqJCabqmVdkL1jfQd/s1280/IMG_9961%255B753%255D.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiONVvGHuXIFTMmLM3ymZjH9j73pStCJFsxT8CcTo0I8H7C1jQNPszEDdvYL3HS6ZfViaXHJ8bb4EAXrqSuPETQFTpE96FFUcpzgs0BVnUrulanPNbTbIMHfmVwNeHuqJCabqmVdkL1jfQd/s320/IMG_9961%255B753%255D.jpg" /></a></div><br /><span><br /><br /><span> </span>We began a search for new van, one that would let me stay in the wheelchair eliminating the transfer, we thought we found it. I located a 2002 Ford conversion van hightop, already handicap accessible. I knew because of the weight of my wheelchair, and the weight of myself that the lift in this van probably wouldn't work. The lift is a 600 pound capacity and my wheelchair weighs 450 pounds by itself. I spoke with the company that does the van conversions in my area and was told that it would be no problem since there was already a lift in the van, just a matter of swapping them out. Not true. So now I have two vans, one that I can get into but not use, another that I could use if I could only get into it. </span><div><span><br /></span></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglebg4B5AMg8hn1aZSYgUEV1tQ0TLRVSaPQfT-PVPkTv68ANWn5HSdE0sqqrLFVriXq_kHecBLyHLjzp0515kDzsGGXIbQIHmFihkcKnSiott0SExQqaNsYUMcVR2eKumsIXFSGkdMlpNg/s600/00D0D_6lg5sWoE7oIz_0lq0dh_600x450.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="371" data-original-width="600" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglebg4B5AMg8hn1aZSYgUEV1tQ0TLRVSaPQfT-PVPkTv68ANWn5HSdE0sqqrLFVriXq_kHecBLyHLjzp0515kDzsGGXIbQIHmFihkcKnSiott0SExQqaNsYUMcVR2eKumsIXFSGkdMlpNg/s320/00D0D_6lg5sWoE7oIz_0lq0dh_600x450.jpg" width="320" /></a></div><br /><span><br /><br /><span> </span>My cousin passed away in December, he wasn't sick, it was a construction accident. In lieu of flowers his family asked the donations went to a go fund me page in hopes that enough money would be raised for me to get a new van, it was. I tried to figure out a way to make the old van work, I bought another van in hopes of making that work, it was time to buy the van that fit my needs and was ready to go. What we came up with was a $35,000 Toyota sienna, it has a power fold-down lift and you can remove the front seat which allows me to sit up front, something I haven't done in a few years. Now my driveway looks like a handicap accessible van dealership! The next job on the horizon is to sell the other two vans. </span><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpXCQVA3PwSRKOJflI07JFz7rufRymwEpIfOWlD0rZdoZ3lviyCGO6K18kmf8LC7yccTOV4dKSkCWOxqlEac421KiEDvb0yO4lbKmsZYPpadQpziHGwsi5RzW3BiuVThcpnBfMyhexVXm9/s800/IMG_7357.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="600" data-original-width="800" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpXCQVA3PwSRKOJflI07JFz7rufRymwEpIfOWlD0rZdoZ3lviyCGO6K18kmf8LC7yccTOV4dKSkCWOxqlEac421KiEDvb0yO4lbKmsZYPpadQpziHGwsi5RzW3BiuVThcpnBfMyhexVXm9/s320/IMG_7357.jpg" width="320" /></a></div><br /><div><br /><div><br /></div><div><span> </span>I'd like to take this opportunity to thank my cousin Kevin who showed an interest in how hard it was for me to transfer in the van after the last time we saw each other in October. I'd also like to thank his family who in their time of grief and loss thought of me. It will forever be appreciated </div></div></div></div>awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com0tag:blogger.com,1999:blog-8161681196766725842.post-82003671739030686842021-05-20T13:40:00.002-04:002021-05-20T13:40:50.135-04:00How Did I Get Here?<p> <span> Been away for a while, was thinking I'd give it a go again. I had one of those days that convinces me there is a hell. In the fall I finally got my suprapubic catheter put in, today was my day to get </span>a new one put in. I have to do that every month, it usually goes smoothly, not so much today. The young woman was fairly new and although I am sure she knows what she's doing, she failed to hit the mark today. She made repeated attempts to get it in but had to call in a more experienced person to get it done. In the end the task was accomplished and I went on my merry way, but not before going 12 rounds George Foreman.</p><p><span> </span>So now it's time to go home. We make our way to our trusty '87 Chevy van, the one that was given to us and has worked perfectly... Until now. The van still runs great, the problem is I have to transfer from the wheelchair to the seat, something that's getting harder to do and some days impossible. Today was one of those impossible days. We got home and when it became time to get out of the seat and back into the chair I was so weak from the ordeal of the catheter change that I could not make the transfer. I had to swallow my pride yet again and call the fire department to come aid with the transfer, something that is happening far too many times recently for my liking.</p><p><span> </span>How did I get here, going once a month to have a new catheter inserted, having to rely on the fire department to get out of the vehicle or off of the floor? I understand the concept of end stage, but can I really be there? Urinating in bag and seatbelted to a wheelchair to prevent falls? Not quite what I envisioned for my life, but then do any of us really know where were going to end up? At least I got a doughnut yesterday and was able to eat it before the fire department came, so I've got that going for me.<br /></p>awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com0tag:blogger.com,1999:blog-8161681196766725842.post-15254289331863690682020-03-17T09:17:00.000-04:002020-03-17T09:17:44.393-04:00 Surgery is postponed indefinitely due to the coronavirus. I'm bummed out, but better safe than sorry. Going today for a new Foley catheter, had to take the last one out on Friday, it was clogged. No traffic anywhere, it's really weird. empty parking lots at restaurants,awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com1tag:blogger.com,1999:blog-8161681196766725842.post-80731633543567006182020-03-12T02:45:00.000-04:002020-03-12T02:45:23.372-04:00Assisted Suicide and Multiple Sclerosis We had the talk, the one you dread having, but one people like me need to have. It starts with a quote, remember when you said you would support whatever decision I made on the final disposition of this illness...q the tears. The wife supports me, just doesn't want to go yet. I have said from the very beginning I'd only let this progress so far before I put an end to things. Not on the doorstep of that place, but I am pulling up to the curb. Everything is an effort, and with that effort comes a good amount of pain. When the time comes I choose to exit on my own terms.awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com2tag:blogger.com,1999:blog-8161681196766725842.post-21373363524627145882020-03-10T14:01:00.000-04:002020-03-10T14:01:00.371-04:00Foley Catheter is a Pain in the Neck, Actually the Pain is a Little Lower. I have a small cut on the back of my pate from my tumble, a little sore, but I will survive. Did I mention how much I dislike the foley catheter? I've had one since about Halloween, it's made a huge difference, it's just so damn uncomfortable. I'm actually looking forward to the suprapubic catheter surgery, how sad is that?<br />
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Riddle me this? Paraplegia, <span style="background-color: white; color: #3c4043; font-family: "roboto" , "helveticaneue" , "arial" , sans-serif; font-size: 14px;">paralysis of the legs and lower body, typically caused by spinal injury or disease.</span><br />
<span style="background-color: white; color: #3c4043; font-family: "roboto" , "helveticaneue" , "arial" , sans-serif; font-size: 14px;"><br /></span>
<span style="background-color: white; color: #3c4043; font-family: "roboto" , "helveticaneue" , "arial" , sans-serif; font-size: 14px;">Quadriplegia, paralysis of all four limbs. </span><br />
<span style="background-color: white; color: #3c4043; font-family: "roboto" , "helveticaneue" , "arial" , sans-serif; font-size: 14px;"><br /></span>
<span style="background-color: white; color: #3c4043; font-family: "roboto" , "helveticaneue" , "arial" , sans-serif; font-size: 14px;">What do call it when you can't use your right arm and leg? I call it screwed! </span><br />
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awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com0tag:blogger.com,1999:blog-8161681196766725842.post-2544886378948875852020-03-09T16:11:00.000-04:002020-03-09T16:11:47.272-04:00Major Depression, Don't Want to Play Anymore Major depression day, I've got the blues, big time. I have days that I can't believe my life is where it is, just can't shake it. All sorts of things run through my mind. How much longer can I keep this up? What happens when I can no longer transfer? It's coming, don't know what I can do to stem the tide? Don't know how much longer I want to fight it? When is it time to embrace the beast, just let it go? It's a good thing I don't have a machine that could be unplugged, not today.awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com0tag:blogger.com,1999:blog-8161681196766725842.post-32111377797725254042020-03-09T01:05:00.001-04:002020-03-09T01:05:34.750-04:00Leg Shaking Made Me Fall on the Floor While Transferring Into Bed Took a little tumble transferring into bed tonight, I got that leg quivering thing going on and that was all she wrote. Had the crew from the fire station here, again, to lift me up off the floor, my hat is off to them. Time to get a transfer board, can't keep depending on the lads to lift me up. It takes a chunk out of my soul everytime this happens, no reason to think it's going to get easier. Now to figure out a new toy, always something to do.awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com0tag:blogger.com,1999:blog-8161681196766725842.post-64509469433713674232020-02-29T17:40:00.000-05:002020-02-29T17:40:03.756-05:00Moving on From Facebook, suprapubic Catheter Time I'm thinking about dropping Facebook? I've enjoyed it, but its run its course for me, it doesn't make me feel good anymore. I'm happy that my friends have succeeded in their lives, its getting hard to to be outwardly joyful about their trips, or vacation homes. I will never do those things. I'll never buy a new truck, or fix up an old one. I'll never lay on the beach in some exotic country. I'll never travel much further than to one of my many doctors appointments. Facebook has become a daily reminder of the things that could have been, but will never be, therefore I choose to look the other way.<br />
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Speaking of doctors appointments, I have surgery on March 19th, having a suprapubic catheter inserted. I had been doing the self catheters for a while, but getting harder to do one handed. The foley gets the job done, but it's not without side effects. I was scheduled a few weeks ago, had to cancel because of blood sugar, yay me. The sugar is under control now, so f<br />
<br />awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com0tag:blogger.com,1999:blog-8161681196766725842.post-47424643643301177472019-12-30T17:22:00.000-05:002019-12-30T17:22:57.721-05:00Abscess Time Recovering from an abscess, not a pleasant experience anywhere, this one took unpleasant to new heights! The abscess was at the base of my testicles. Yes, the base of my testicles. I'll wait for the guys to finish squirming and the women chortling, he said testicles. ok, the doctor thinks it was an irritation from the catheter tub, the constant rubbing. In 24 hours it went from the size of a grape to the size of a lemon. The doctor velcro'd my ankles into stirrups, the nurse held "things" out of the way, and the cutting began. The incision was large enough that the doctor stuck his finger in the hole to clean it out, he and the nurse will definitely be getting Christmas cards next year, that's how close we are now. Now we have weeks of packing the wound, trips to the doctor's office, good thing is I don't need to stay in bed.awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com0tag:blogger.com,1999:blog-8161681196766725842.post-31895037486726952562019-08-30T13:17:00.001-04:002019-08-30T13:17:48.160-04:00Everything Is a Chore Things have been hard, haven’t been here in a few. I vaguely remember when things were easier, like taking a shower, jump in, jump out. Now they have to be planned. It won’t be long until I sit on a stool outside and they squirt me down like a circus elephant. About 2 weeks ago I started with a buzzing in my left hand, the good one. I remember what that meant for the right one, not happy about it. We will figure it out, no choice, the beast has taken so much, I was hoping it would leave me some scraps. I guess not.awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com0tag:blogger.com,1999:blog-8161681196766725842.post-78625082627126043682019-08-07T15:24:00.000-04:002019-08-07T15:24:09.349-04:00Strength to Go Out I’ve got a dentist appointment today, fun day out amongst the humans. It will take every ounce of energy I have for this. I need to do some research, what happens next? What happens when I can no longer gather enough strength to get to the dentist? I go to the doctors too. I see people there with caregivers, usually a woman, where do they come from? I really don’t want that. It’s really no fun living your life in the what if lane, it’s even worse in the when lane. It’s raining now, that will make it easier! See, when you are having a bad day there is always a chance it will get worse!<br />
<br />awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com2tag:blogger.com,1999:blog-8161681196766725842.post-78760680863682037552019-08-03T12:33:00.000-04:002019-08-03T12:33:14.800-04:00Forcing Myself to do More I’m going to cook a sirloin tip roast today, all by myself! That’s right, you heard me, by myself. I edged the sidewalks yesterday, almost killed me, but I did it. The boy did the hard pard, he got the edger, the blower, and the extension cord. Ok, that’s not by myself, but I did the edging. The <a href="https://pin.it/kiaqii76tklvjb" target="_blank">roast</a> is going to be all me. Going to force myself to do some things, if not I’m going to lose the battle. The hope is the more I do, the more I will be able to do. The eyes are a little fuzzy today, combination of the heat and the exertion. Hopefully the roast will look something like this?<br />
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<br />awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com1tag:blogger.com,1999:blog-8161681196766725842.post-58368351801305173972019-07-31T15:17:00.000-04:002019-07-31T15:23:48.357-04:00County Thinking For Me I got turned down by the county again for a curb cut at the rear of Perry Hall middle school, they said it was in my best interest. Honest, they really said that. If I was able to walk, I would be able to walk in the street. I could jog, bike, trike, pogo, do cartwheels. Kids can ride their bikes in the street, skateboard, roller skate. I guess the county has decided that when I became a full time wheelchair rider I must have become feeble minded also? They also said there wasn’t money in the budget, but I’m stuck on the fact the county thinks I am unable to make safe decisions.<br />
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In an email from the school board, “<span style="background-color: white; color: #313131; font-family: , "helveticaneue"; font-size: 18px; word-spacing: 1px;">Without a safe pathway through our property and in the interest of the safety of the community member, we are unable to support this request.“ Safe pathway? From the rear of the school to the front? How can that be? I think I need to go into full beast mode with the school and my county council person? Show them how much cheaper a curb cut would be as compared with a lawsuit to make a safe pathway from the rear of the school. </span>awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com2tag:blogger.com,1999:blog-8161681196766725842.post-61892661258835516292019-07-17T21:13:00.004-04:002019-07-17T21:13:56.190-04:00No Steak For Me We were all set to go out tomorrow for a monster steak dinner at <a href="http://www.michaelscrabcakes.com/" target="_blank">Michaels steak and lobster house</a>, then the wife went on a recon mission. They aren’t wheelchair accessible, but they do have ramps that they use to overcome the couple of steps. The real problem is the bathroom, not only are the doors too narrow to enter the bathroom, the stalls are way too small also. Oh well, I will survive, I don’t expect the world to change for me, plenty of other places to eat. But a 40 ounce steak for $25.95, come on!<br />
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<br />awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com1tag:blogger.com,1999:blog-8161681196766725842.post-33153381994653697482019-07-10T18:11:00.000-04:002019-07-10T18:11:44.514-04:00Crab Picking Woes Life is full of cruel irony at times. I love steamed crabs, we recently got a crab guy, great crabs, great price, steamed to perfection. The mustard is good, leg meat pulls out every time. The irony comes in the fact I have a dead right hand and a left hand with increasingly less dexterity. I have these beautiful crustaceans in front of me and lack the ability to pick them. My family picks them for me, but where is the fun in that? I start out trying, but it’s like watching a squirrel trying to drive a car. I’ve given up a lot of things, I will not give up crabs!awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com2tag:blogger.com,1999:blog-8161681196766725842.post-68331428599175829872019-07-05T17:25:00.000-04:002019-07-05T17:25:55.923-04:00Lack of Feeling In My Rear I was really concerned the other day, out of nowhere a spot on my rear end suddenly hurt. When I say hurt I mean agony! No warning signs, just progressively worse as the day went on. The wife wasn’t home so I tried to reposition, laid down, got out of the chair, no luck. How could this be, nothing when I got up that morning, now agony? It didn’t make sense and I was not happy. When the wife got home I told her what was going on, asked her to take a look. I steeled myself for what she would find when I heard her laughing. At some point during the day I had a bottle cap find its way into my underwear! Yes, I had a bottle cap stuck to my ass all day and didn’t know it was there, or how it got in my underwear! Son of a... are you serious? I know I don’t feel much, but a bottle cap? Stuck to my ass? You can’t make this stuff up!awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com0tag:blogger.com,1999:blog-8161681196766725842.post-69319523138887869642019-07-02T22:19:00.000-04:002019-07-02T22:19:08.659-04:00Wheelchair Finally Fixed I got my wheelchair back! You are probably wondering what all of the fuss is about, a wheelchair is a wheelchair. I used to think that way too, used to. Imagine your favorite chair, then imagine one you hate, it’s uncomfortable and too small. Now imagine sitting in the latter every waking hour of your day. My chair was literally made for me. They took measurements and made it custom, just for me. I hate having to have it, but I’m so happy to have it back.awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com1tag:blogger.com,1999:blog-8161681196766725842.post-18175516347287188262019-06-30T06:22:00.000-04:002019-06-30T06:22:32.525-04:00Heat Takes It’s Toll Heat is not my friend! If I was married to heat we would have divorced years ago, it’s just not a healthy relationship. My issue isn’t that I don’t personally like heat, it’s that it has a horrible impact on me. The first to happen is my vision gets cloudy, like I’m looking through cheese cloth. Next it is a total drain on my energy system, I become listless. Muscle control is next, I’m no longer in control of how my body acts, things like sitting up are affected. I had a confrontation with heat on Friday. I had a doctors appointment on Friday, had to go regardless of the heat. The van isn’t air conditioned, it was a hot one on Friday! I had all of the aforementioned symptoms, it was a struggle to get my big ass in the house. The switch that heat flips isn’t so easy to turn off, the effects don’t simply revert when I get cool, they last for days. Vision is better, muscle control is returning, energy will be the last thing to return, hopefully. The problem with secondary progressive ms is that things don’t always return to where they were, it’s like my body is constantly playing a game of shoots and ladders, and I’m losing.awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com0tag:blogger.com,1999:blog-8161681196766725842.post-43930239471041478502019-06-27T07:05:00.000-04:002019-06-27T07:05:33.524-04:00Wheelchair Woes This was the first tilting wheelchair I had, a quantum hd. It was awesome, except the motors kept burning up. I threw a royal hissy fit and they took it back.<br />
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Next I got my Permobil, was great for the first 2 years, then the tilt motor went up. Looking at maybe Monday to get it back? No big deal, it’s not like I need it!</div>
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awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com1tag:blogger.com,1999:blog-8161681196766725842.post-25607220085765345832019-06-25T20:13:00.000-04:002019-06-25T20:13:49.630-04:00Spasticity and Sleep I’m having an issue with sleep. Since I started with the catheter I have been enjoying 5-6 hours of sleep a night, straight through. Before I was getting up 3-4 times a night to go to the bathroom, I was only able to empty my bladder 1/4 of the way. The issue is that getting up 3-4 times a night makes it easier to go back to sleep, it all has to do with spasticity. An hour or 2 at a time still causes the spastic tremors when I move, but they would subside. Moving after 5-6 hours being in the same position is another story. These tremors are borderline seizures, my whole body goes stiff and shakes violently. It continues for a good long while. Understandably I can’t get back to sleep. I guess I should be happy I am getting any sleep at allawbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com2tag:blogger.com,1999:blog-8161681196766725842.post-52078291275122662292019-06-24T12:16:00.000-04:002019-06-24T12:16:03.925-04:00Arms Almost as Dead as My Legs I think back to when all of this started , I began to prepare myself for the day that I could no longer walk. I thought I had done a good job mentally preparing myself for what sounded like an inevitable future. I’ll tell you something that never crossed my mind, my arms and hands. I honestly never even considered it. Imagine my surprise one day when I was putting on my deodorant and had a hard time holding my arm up. I have prided myself in how I have been able to adjust to the little things, I now put my right arm on the windowsill to apply my deodorant, problem solved. The problem is, like my legs, things started on my right side, then gradually migrated to the left. The right arm on the windowsill was possible because I lifted it there with my right arm, that is getting harder to do. I have begun to drop things with my left hand, not aware they are no longer there. This realization is not a new one, 25 years ago I switched carrying my service weapon from the right side to the left, it got me 3 extra years at work. The problem is I am fresh out of arms. I am trying to prepare myself for what happens when the left side is as dead as the right, it’s somewhat of a hard thing to do. I will do my best, just not sure how much more I have in me?awbhttp://www.blogger.com/profile/05029157758859447422noreply@blogger.com1