April 17, 2016 at 11:53 am #127401sativex mouth spray england
My brother is 30 years old and has DMD, after a year of severe pain in his legs and hips he became bed ridden no way could he even use the hoist his pain level top end 24 hours a day with no give!! he has tried all opiate and muscle relaxant pain medication but still suffered tremendous pain as a family this is heart breaking as there is nothing we could do except physyo, reasurance and meditation kinda stuff anyway we researched and came across sativex a cannabis mouth spray with good reviews from sufferers with MS! on reading the pain symptoms they are almost identical to my brothers so this got us thinking and we pushed to get this drug and with the support of his doctors, pain management team and pharmacist they won the fight and got this spray! now hear is were I cry as I type away, only the tears this time are of happiness! my brother has been taking sativex for around 2 weeks and as of 4 days ago is pain free YES PAIN FREE!!!! no pain what so ever he is now smiling again and even planning days out to the safari park, this is so amazing as he has not been able to get in his wheel chair for 12 months i want others to know about this drug as when used along side the other pain medication is relay a miracle drug at least for my brother and awareness is needed as others with DMD of my brothers age will also suffer.April 17, 2016 at 4:35 pm #127406Reply To: sativex mouth spray england
Hi, that is fantastic to hear that your brother is pain free now. For him and all his family and friends. Perseverance has paid off and I’m so glad that the doctors are on board and are listening.
As a moderator I do have to point out that no one should try taking anything drug related without seeking medical advice first and then with proper monitoring – I admire your determination with the medical profession and thank you for telling us about it.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015April 18, 2016 at 11:23 am #127451Reply To: sativex mouth spray england
thank you for your comment!
I feel and I have seen..not enough time or research is put in to the men with DMD at the age of 25 and above, and doctors are stuck to understand there condition or what causes there pain like with my brother and a few of his friends who also have DMD and are in that age group! as a child having rods done is great and does give greater quality of life, but in later years causes pain once the muscles around the rods deteriorate, as with my brother now, quality of life is a must for these men and unfortunately there is little understanding which makes even a hospital admittance stressful as the beds and mattresses are unsuitable, then the rooms are to cold and a hoist do not get me started on that lol, then the great risk of catching an infection, my passion to help these men is greater then life its self I just do not no were to start please advise..
wendyApril 18, 2016 at 3:47 pm #127500Reply To: sativex mouth spray england
Could part of the reason for lack of research or knowledge of DMD peeps aged 25+ is because it is only in recent times their life expectancy has been extended?
I remember when I first started volunteering with MD it was thought remarkable if a sufferer progressed past school leaving age (16)
Hopefully medicine will catch up
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015April 18, 2016 at 5:03 pm #127512Reply To: sativex mouth spray england
you hit the nail on the head, my 2 uncles both had DMD, so I have a lot of personal experience on the effects of MD but times have changed and these boys are indeed turning into men so is there really time to wait for medicine to catch up. your comment could be taken wrong time waits for no man, but thanks all the same I do see your point and it is realistic and true..
wendyApril 18, 2016 at 7:50 pm #127514Reply To: sativex mouth spray england
There are many areas that need addressing. Today I read the report on Cough Assist availability. Awareness is improving but there is still much to do in convincing Commissioners that the machines are an essential piece of equipment.
My condition is not as severe but similarly am finding that there is no rule book, it is unknown territory. I am part of a generation that is living beyond those before me. So much more is known and symptoms better managed with advancements in medicine and technology however I think we have much to teach those who support us and provide our care, admittedly frustrating when costs are involved! If only those that hold the purse strings could see that certain spends could actually make long term savings!
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015
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