tag:blogger.com,1999:blog-739702288597532382.comments2023-12-04T08:23:26.994+00:00A journey to HSP/FSPAdam Lawrencehttp://www.blogger.com/profile/00767250711268444757noreply@blogger.comBlogger107125tag:blogger.com,1999:blog-739702288597532382.post-5106134567910524532021-12-12T15:13:08.850+00:002021-12-12T15:13:08.850+00:00Hi - Thanks for sharing your story, I dont know th...Hi - Thanks for sharing your story, I dont know that I'm able to help with Ellen, but hope that you find a good solution.Adam Lawrencehttps://www.blogger.com/profile/00767250711268444757noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-70747283543075162942021-12-12T15:08:37.442+00:002021-12-12T15:08:37.442+00:00Thanks for sharing your story!Thanks for sharing your story!Adam Lawrencehttps://www.blogger.com/profile/00767250711268444757noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-39665280788127116432021-12-10T18:15:39.302+00:002021-12-10T18:15:39.302+00:00I did write the comment with my name, for some rea...I did write the comment with my name, for some reasons it's not there<br />my email contact is katikemeny0@gmail.comAnonymoushttps://www.blogger.com/profile/01944958719414019016noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-85301404535751327112021-12-10T18:12:30.011+00:002021-12-10T18:12:30.011+00:00Hi Adam,
I live in Montreal, Canada. After three y...Hi Adam,<br />I live in Montreal, Canada. After three years of tests and consultations, I was finally diagnosed with HSP by a neurologist at the McGill Neurological Institute. I have no known family members (past and/or present) with the same disease. From knees down to my feet my legs are stiff, and my balance is almost zero. Other than these symptoms, I have absolutely no other side effects, no bladder problems, no swallowing or facial muscles problems. I teach ESL online, I have to use my lips and face so that my students can understand me and follow my instructions. I used to teach in person, but as of March 2020, due to Covid19, all my classes were suspended, then they have restarted online. I still drive everywhere but walking has become slow, I have to rely on a cane and/or walker. I had two dogs, corgis, they were my balancing act on our walks. One of them, Esther, died in February, she was 12 and had cancer and kidney failure. Due to my loss of income during the spring of 2020, I had to give them up for adoption - I was not able to afford my daily dog walkers who took them for long runs or to the dog park. Within three months my online classes have assumed so my financial status has stabilized. I reached out to the adoption coordinator to please have Ellen ( by then Esther passed) returned to me. Dr Massie, my neurologist has written several letters to the adoptive couple, emphasizing how important part she would be playing in my HSP affected life as my service dog. But we never had any response. I am beyond desperate, I miss Ellen, had it been not for my own daughter Fanny (who is married and living with her husband in another part of Montreal) I would have driven off a cliff or a bridge..<br />Please, Adam, or anyone within the HSP community, help getting Ellen back. I will be glad to forward all the documentation RE my problems.<br />In exchange, I will volunteer my time and talent to the HSP organization.<br />Thank you for your amazing work, as of now, I am a faithful follower.<br />Yours truly<br />kkAnonymoushttps://www.blogger.com/profile/01944958719414019016noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-41076037985945957272021-12-10T14:54:24.829+00:002021-12-10T14:54:24.829+00:00I've had HSP since the age of 2 or just around...I've had HSP since the age of 2 or just around there. There were 5 family members that had HSP, 2 have passed on, but 4 of us still remain. We all have different degrees of HSP. Let me tell you, we've all different lives as well. I personally, have probably been the luckiest one, then our son. Bladder is an issue, walking has become more unstable as I've become older (67 now). Always had my own way of walking, but road a bike, roller skated, took long walks, etc. My Mom, sister and niece, were not so lucky. I don't believe my Grandfather did any of those things either. I had lots of friends and still do, and was not judged by the way I walked, others not so lucky. I think it was because I tried to accomplish things, and they didn't have the strength to try as hard. I also have a wonderful husband that is always by my side. I'm much slower now, use a cane and can't ride a bide, roller skate or take long walks, unless I'm in a wheel chair and my husband pushes me. I know I don't exercise enough, kind of lazy. I worked my whole adult life and did well for my family. I know this is no fun, but I always say "It could have been worse." Best of luck to all that share HSP. Debra Troxelhttps://www.blogger.com/profile/04358464557496362025noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-8209570224972939952021-09-25T19:25:48.441+01:002021-09-25T19:25:48.441+01:00NiceNiceSam Patrickhttps://www.blogger.com/profile/11780156789350519722noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-42733355905825363072020-08-08T07:06:35.621+01:002020-08-08T07:06:35.621+01:00Hello Dear,
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Thanks for sharing such usefu...Hi Dear,<br /> Thanks for sharing such useful blog. Really! This Blog is very informative for us which contain lot of information about counselling service. I like this post. Please visit at <a href="https://edmontoncounsellingservices.ca/services/edmonton-anger-management/" rel="nofollow"> "Best counselling Edmonton " </a>, i hope you may like our counselling.<br /><br />Visit Here - <a href="https://edmontoncounsellingservices.ca/services/family-counseling/" rel="nofollow">https://edmontoncounsellingservices.ca/services/family-counseling/</a><br /><br />Thanks Regards,,armstrongharryhttps://www.blogger.com/profile/01009601725747824297noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-74589554521219165032020-01-14T06:07:09.916+00:002020-01-14T06:07:09.916+00:00Walking stick is a mobility device that mainly mad...Walking stick is a mobility device that mainly made with wood, metal, or plastic. Aids 4 Mobility has a great collection of the best <a href="https://www.aids4mobility.co.uk/walking-aids/walking-sticks" rel="nofollow">quality walking sticks</a>. If you want to buy then you just need to visit their website.JM Craftshttps://www.blogger.com/profile/18019284883736917466noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-19817440844577646482020-01-09T02:02:31.707+00:002020-01-09T02:02:31.707+00:00I forgot all about this blog (and my comment), jus...I forgot all about this blog (and my comment), just stumbled actoss it on a random search.<br /><br />Means I have been taking 4-AP daily for my spasticity for five years. And 4-AP-3-MeOH. Though 4-AP-3-MeOH is more expensive.<br /><br />It is well worth looking at similar diseases, like Multiple Sclerosis. Plenty of commonly prescribed medicines there that also help people with our disease.<br /><br />Modfinil, 4-AP, Ampyra, etc.<br /><br />Still get my 4-AP from mod4all, though now at https://mod4alll.com I'll post up some relevant links in a short while, need to read through the blog first.Chrishttps://www.blogger.com/profile/02678970931022151067noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-3677076093850793802019-12-09T15:04:10.673+00:002019-12-09T15:04:10.673+00:00Life with HSP is not easy but the life can be made...Life with HSP is not easy but the life can be made comfortable and easy with some helping accessories. The mobility aids such as wheelchair is most popular. Some other wheelchair accessories are nowadays used widely such as <a href="https://www.aids4mobility.co.uk/Wheelchair-Poncho" rel="nofollow"> wheelchair poncho </a> that can make the journey more comfortable. Sheranhttps://www.blogger.com/profile/14566063258930861585noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-554723875947675402019-12-06T17:27:27.876+00:002019-12-06T17:27:27.876+00:00Creo que tengo HPG desde la infancia, (BSCL2, SPG1...Creo que tengo HPG desde la infancia, (BSCL2, SPG17)con síntomas muy atenuados.De siempre he tenido dolor lumbar y sobre los 40 años caminaba un poco raro sin que esto me impidiese ser militar. A partir de esta fecha se fueron agudizando y en la actualidad (80 años) ya camino con bastante dificultad con bastón. No tomo ningún medicamento para la HSP y mi evolución es muy lenta.<br />Nunca noté mejoría con ningún medicamento prescrito para esta enfermedad.<br />Una encuesta en la que participaron más de 70 afectados de HSP arroja el resultado de que ningún medicamento mejora. Se habla de caminar y la natación, yo tampoco los practico. Hoy desconfío, porque somos pocos quizá no estemos motivados lo suficiente y no hemos sido capaces de conseguir interés de la industria farmacéutica y de los organismos oficiales con competencia para la investigación de alguna solución.Pacorrohttps://www.blogger.com/profile/17727788293290776745noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-55559512086455689032019-11-10T00:03:10.062+00:002019-11-10T00:03:10.062+00:00I have SPG7 I take no meds, I do yoga and stretchi...I have SPG7 I take no meds, I do yoga and stretching daily I use a cane outside the home and a mobility scooter<br />Anonymoushttps://www.blogger.com/profile/03034571980849682543noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-35301655834687347472019-11-08T05:48:25.265+00:002019-11-08T05:48:25.265+00:00Disability is not curse. People with physical disa...Disability is not curse. People with physical disability can overcome all obstruction and shine like the diamonds. It is the mind that can make us disabled even with the good health. So Make life more comfortable with the <a href="https://www.aids4mobility.co.uk/bathroom-aids" rel="nofollow"> disability aids </a> available nowadays to support walking and movement. Sheranhttps://www.blogger.com/profile/14566063258930861585noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-87063455185978500362019-10-20T16:40:55.496+01:002019-10-20T16:40:55.496+01:00People who cannot walk easily or unable to walk ne...People who cannot walk easily or unable to walk need <a href="https://www.aids4mobility.co.uk/" rel="nofollow"> mobility aids. </a> There are many instruments and accessories that are used for smooth movement and help a lot to people who cannot walk properly. These aids are nowadays also available in local market and in internet. Sheranhttps://www.blogger.com/profile/14566063258930861585noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-72104315097858195342019-10-11T07:50:34.954+01:002019-10-11T07:50:34.954+01:00Hereditary Spastic Paraplegia is a rare disease. B...Hereditary Spastic Paraplegia is a rare disease. But who are affected only know how much the suffering. Take love from me author. Nowadays disability can be minimized by using proper aids. With improvement of medical technology, Many <a href="https://www.aids4mobility.co.uk/bathroom-aids" rel="nofollow"> disability aids </a> are available invented to ease the life of disabled persons. Sheranhttps://www.blogger.com/profile/14566063258930861585noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-51132674441446812852019-10-09T10:57:55.563+01:002019-10-09T10:57:55.563+01:00I have SPG7 - the medications I take are for bi-po...I have SPG7 - the medications I take are for bi-polar. I swim, a mile, 3 - 4x per week.Brucehttps://www.blogger.com/profile/12801902569876939998noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-6952558980560608552019-08-07T16:47:18.026+01:002019-08-07T16:47:18.026+01:00I really appreciate information shared above. It’s...I really appreciate information shared above. It’s of great help.Thank you for taking the time to publish this information very useful. Thanks for your great and helpful presentation I like your good service.I always appreciate your post.<br /><a href="http://www.panaceapgx.com/" rel="nofollow">severe depression treatment</a>Jhon machttps://www.blogger.com/profile/15268898196520486192noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-39986357504670674322019-08-07T03:42:49.744+01:002019-08-07T03:42:49.744+01:00I’m really amazed with your posting skills as well...I’m really amazed with your posting skills as well as with the layout on your blog site. Very informative and well written post! Quite interesting and nice topic chosen for the post Nice Post keep it up.Excellent post. <br /><a href="http://www.panaceapgx.com/" rel="nofollow">depression severe</a>Anonymoushttps://www.blogger.com/profile/13463461819633866528noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-75854657630385893632019-06-04T04:20:10.537+01:002019-06-04T04:20:10.537+01:00Thanks for sharing--I know it all so well but nice...Thanks for sharing--I know it all so well but nice to have it confirmed. The shame and the judgement part is the most hurtful because it is true. <br />Anonymoushttps://www.blogger.com/profile/03138656637780271762noreply@blogger.comtag:blogger.com,1999:blog-739702288597532382.post-73259095654956426962019-06-03T20:07:39.364+01:002019-06-03T20:07:39.364+01:00Thanks so much for the review. It reads just as re...Thanks so much for the review. It reads just as real life for me and I find it comforting to know it’s not just me. Beautifully put together. <br />Dorothy Drouthyhttps://www.blogger.com/profile/10102099950545273062noreply@blogger.com